NO MEDICAL CONCLUSIONS OR TREATMENT OPTIONS SHOULD BE BASED UPON THE INFORMATION CONTAINED ON THIS PAGE.


Information contained herein has been provided voluntarily by our members who are, or were, suffering with Hemifacial Spasm (HFS) and have or continue to use Botox®. It is provided for information, not as a formal study or a recommendation for any type of treatment. It does not purport to include all treatments members may have undertaken. To correspond directly with a member identified on this page, click on the member's name. To post a question to the entire HFSA group, click here HFSA E-mail Group.

The proper course of treatment for one individual may vary from what is appropriate for another individual, due to the actual condition and/or complications of that person. You should always consult your own medical team before proceeding with or deciding upon any course of treatment related to information presented on this website or elsewhere. It is understood that you need to visit with your own healthcare provider in order to reach a diagnosis for treatment.

To send an e-mail to any member listed on this page, click on the member's name.


Name
Location
HFS Side HFS Start Botox Used Botox Still Used MVD MVD # MVD Date MVD Doctor Spasm Free
  Botox Comments
Rakefet Abou

Kiryat Bialik (Israel)
Left
2007
Yes
Yes
No





Botox Comments: Botox once, June 2009, it's becomming worse...helped alot, but makes my face a-simetry.
Lyn Abraham
Inactive Memb.
Toronto, Ontario (Canada)
Left
1986
Yes
No
Yes
1
10/01/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox from 1997-2003, 6 years. The first couple of years it was effective, now less and less effective, extremely dry eyes and post injection 10 days of an eye that did not close. I am waiting the nine months for it to wear off before surgery.

MVD Comments: Spasm free immediately after surgery. Had a rotten time with the anesthetic, caused extreme vertigo but that is improving daily. Dr. Kassam thought I would not likely have hearing in that ear, but that too is improving significantly. Had Bells Palsy about ten days out, that is all but gone. (Update provided 10/31/03).

Trudy Achenbach

Smyrna, DE (USA)
Right
2004
Yes
No
Yes
1
02/07/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Seems like the dose was not helping as much. Mouth was drooping-people were noticing.

MVD Comments: For details, click here to see my "MVD Diary.

Debbie Adams

Baltimore, MD (USA)
Left
2000
Yes
Yes
No





Botox Comments: I've only had to have 2 injections since my spasms started. For some pleasant reason, my spasms have gone away twice for 9 months at a time. Unfortunately, they haven't gone away this time.

MVD Comments: Was scheduled for MVD on 09/03/08 with Dr. Amin Kassam, UPMC, Pittsburgh, PA (USA), but cancelled surgery since spasms had stopped.

Kathy Adams

Rock Hill, SC (USA)
Right
1998
Yes
No
Yes
1
03/03/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox relieved some symptoms, created others. At one time entire side of face was drooped.

Click here to see my "Personal HFS History".

MVD Comments: Click here to see my "MVD Diary.

Gaurav Agarwal

Jamshedpur (India)
Right
2004
Yes
No
No





Botox Comments: Got Dyspot injection, right side of the face became totally stiff, the affected side, bad medicine.
Peter Alcivar

Somersworth, NH (USA)
Right
1998
Yes
No
No





Botox Comments: I tried Botox once at end of 2001. It was not totally effective at reducing HFS, and gave me a droopy upper lip. The side effects made me decide against trying it again.
Peggy Alcorn

Spokane, WA (USA)
Right
1998
Yes
No
No





Botox Comments: I have had various experiences over 12 years. But lately it is not working so well. I had my last injection 07/31/07. It did not take effect for about a month. My eye was almost closed and the spasm was very active. Since that time it has periods of quiet and then short periods of spasm.

MVD Comments: Scheduled for MVD Consultation on 04/14/08 with Dr. Robert Rostomily, Washington University, Seattle, WA (USA).

Sandra Aldrich

Richmond, VA (USA)
Left
2000
Yes
No
No





Botox Comments: It lasted only 3 weeks and left an asymetrical look for quite some time.
Jeffrey Alexander

Pukalani, HI (USA)
Left
2003
Yes
No
Yes
1
08/04/04
Dr. Takanori Fukushima
Honolulu, HI (USA)
No

Botox Comments: I used Botox for a few years and it worked fine, but after a few years the effectiveness started to wear down, so I went for MVD.

MVD Comments: Wondering if I have blepharospasm. The first MVD they found no vessels or arteries touching the 7th nerve so no decompression was performed.I was spasm free for about 2 years.

Angelique Alkarra

Roseville, MI (USA)
Right
2002
Yes
No
No





Botox Comments:
Myrna Alzate
Inactive Memb.
Elmwood Park, NJ (USA)
Left
1994
Yes
No
Yes
2
07/27/06
Dr. Chandranath Sen
New York, NY (USA)
Yes

Botox Comments: Click here to see my "Personal Botox Experiences".

MVD Comments: As of 08/02/06, still pretty weak, lost most of the hearing on the HFS side, but I'm "SPASM FREE"! (MVD #1 with Dr. Michael Schulder on 02/19/04)

Gail Amendt

Breton, Alberta (Canada)
Right
2002
Yes
No
Yes
1
01/27/09
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: I have been using botox every three months for two years. It worked well at first. Now it works less well and often with considerable drooping and paralysis of my mouth.

MVD Comments: Update as of 02/12/09 – I now consider myself to be spasm free!!!! What a joy to go out in public and not worry about what my face looks like. I just can't stop smiling. My recovery is going very well. I did have a couple of days when I had fever and chills, my neck and back ached, and my headache was worse. Dr. Kaufmann's nurse, Janice, said that there is such a thing as "chemical meningitis", which is basically a reaction to the drugs, teflon, etc. As my symptoms only lasted a couple of days, I am inclined to think that I just had a touch of flu. Anyway, I am feeling great now and rarely get a headache unless I really overdo things.

Steve Anderson

Madison, WI (USA)
Left
1995
Yes
No
Yes
1
04/11/06
Mr. Wadley
Whitechapel, London (United Kingdom)
Yes

Botox Comments: Botox made my face look lopsided, especially when smiling.

MVD Comments: Update as of 05/14/09 - My spasms were actually worse for the first year after surgery. I continued to have Botox for the next two years, but was finally able to go without them as it appeared my nerve was beginning to heal itself. I don’ know if others have followed as long a relief period as I have, but I am here to testify that my recovery is now almost 100% after over 4 years. I had considered a second MVD, but the first surgery had many complications and I just could not bring myself to think about even running additional tests to see if a second MVD was warranted. I count myself blessed that just waiting did prove to be all I needed to do.

Luly Andrade
Inactive Memb.
San Diego, CA (USA)
Left
1999
Yes
No
Yes
1
06/04/04
Dr. John Alksne
La Jolla, CA (USA)
Yes

MVD Comments:
Sheila Anwar

Sabah (Malaysia)
Right
2005
Yes
No
Yes
1
09/09/09
Dr. Lee Foo Chiang
Petaling Jaya (Malaysia)
Yes

Botox Comments: Lost smile and numbness on HFS side.

MVD Comments: Update as of 09/16/09 - 7th day post op.,glad I did it. You won't know if you don't try. Of course research, guts, physical, mental, financial preperation are vital.

Elaina Apatoff

Tabernacle, NJ (USA)
Right
1995
Yes
No
Yes
1
06/26/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I will never use it again. I had severe facial drooping which did not "wear off" in 3 months; at 3 months, however, the spasms returned. At 5 months post Botox, I was diagnosed by a neurologist with permanent nerve damage. More than one year later, my face recovered.

Click here to see my "Personal HFS History".

MVD Comments: I'm approx. 90% back from the temporary facial weakness, and it's only noticeably to me, the perfectionist, at this time. (12/15/03)

Paula Argyros

Dunedin, FL (USA)
Left
1979
Yes
Yes
No





Botox Comments: Some relief, weakness on that side of face.
Emily Armitage

Columbus, OH (USA)
Right
2007
Yes
No
Yes
1
01/14/09
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox-once...not effective at all.

MVD Comments: Update as of 02/08/09 - I am happy to say that I haven't had spasms since the 8th day after my surgery. For those that experience HFS, this website in invaluable.

Mary Jo Armstrong

Longwood, FL (USA)
Left

Yes
No
No






Charlie Auge

Waynesburg , PA (USA)
Right
2006
Yes
No
No





Botox Comments: Extreme pain in neck after injections in neck.
Marlene Aurit

Austin, MN (USA)
Left
2006
Yes
Yes
No





Botox Comments: Update as of 09/02/07 - Just had my 4th round of Botox shots. Each time it is a little different as far as the results - but I have gotten to the point of anxiously awaiting my next shots as they help so much and give me much needed relief. The last time I had 6 shots on my left side. I usually feel results right away lasting about 1 ½ months and reach a leveling off period, then slowly starts to go the other way. The one annoyance is the dry eye, use eye drops for that. My Doctor is with the Mayo Health System and has treated patients with Botox for many years, feel very lucky to have found him.
Recep Avci

Bozeman, MT (USA)
Right
2006
Yes
No
Yes
1
12/12/07
Yes
Dr. Amin Kassam
Pittsburgh, PA (USA)

Botox Comments: My first Botox application was at the beginning of 2007. It was partially successful. My eye was under control but my mouth still ticks. I am two months into my first Botox application and I am not satisfied.

MVD Comments: Update as of 01/06/08 - Had a rough recovery (mostly feeling miserable), and have had some facial palsy but no spasms, and overall I'm pleased with Dr. Kassam and the surgery.

JoAnn Bahr

Hartland, WI (USA)
Left
1999
Yes
No
Yes
1
12/01/09
Dr. Michael J. Link
Rochester, MN (USA).
Yes

Botox Comments: Was on Botox treatment on and off for seven years. I had some relief when the symptoms were concentrated in my eye and cheek area. When spasms moved to cheek, lip and lower chin area, Botox injections were hit or miss as to effectiveness. Largere doses were needed and left the left side of my face with a "frozen" look that I did not like and looked very strange in pictures. I have been off Botox for over one year.

MVD Comments: Update as of 01/04/10 - As of today I am declaring myself spasm free. I have no complications from surgery. My hearing is intact, no vertigo, no nausea and no facial paralysis. I do have that full feeling in my left ear, but Dr. Link is confident that will go away in time. It clears up a little when I blow my nose or cough, so I think that it will clear up soon. I’ve had HFS for ten years, a long time to have the facial nerve compressed.

Jim Bailey

Electric City, WA (USA)
Left
1978
Yes
Yes
No





Botox Comments: Began in 1986 by going to Canada. Works quite well. I have injections approximately every 5 months.

Click here to see my "Personal HFS History".

Lynda Bailey

Fairport, NY (USA)
Left
2005
Yes
No
No





Botox Comments:Second try with Botox with a neurologist this time has left me with a partially frozen eye and blurred vision. Think this is it for Botox.
Brenda Baker

Gastonia, NC (USA)
Left
1998
Yes
No
Yes
1
04/07/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments:
Jan Bakke
Inactive Memb.
Notodden (Norway)
Left
2004
Yes
No
Yes
1
02/20/06
Dr. Per Kristian Eide
Oslo (Norway)


Botex Comments: First time on 02/23/05
Elsie Balfour

Saskatoon, Saskatchewan (Canada)
Right
1996
Yes
Yes
No





Botox Comments: Mixed results.
Robert Banathy

Canton, GA (USA)
Left
2005
Yes
Yes
No





Botox Comments: Botox has been effective in controlling symtoms, with 3 month injection intervals.
Phyllis Barlow
Inactive Memb.
Cochranville, PA (USA)
Right
1997
Yes
No
Yes
1
09/19/05
Dr. Eric Zager
Philadelphia, PA (USA)
Yes
Botox Comments: Had first Botox treatment 4 months ago. Stopped the twitching, but lost my smile. The corner of my mouth was paralized for the first 2 months and has not completely come back. Had second round 2 weeks ago, just around my eye not near my mouth. But its still affecting my mouth as far as my smile. The twitching is coming back in the lower part of my face without the botox. The eye is doing okay. I've had a few months of normalcy and seriously considering the MVD as early as I can get it. No more botox. Have learned to many negative things about it. Don't think it will be great for long term.

MVD Comments: As of 09/18/06 I haven't had one twitch since I woke up from surgery. It's hard to believe a whole year has gone by. It's so wonderful to have a normal life again. Dr. Zager will forever be my personal hero. If it wasn't for the HFSA, I would never have had the nerve to even approach the idea of surgery. This site and group accomplishes so much for HFS patients every day. All the information I learned and the questions I knew to ask when visiting the surgeon gave me the peace of mind I needed to go through with it. Thank you all so much!!!

Lucy Barone

Pittsburgh, PA (USA)
Left
2009
Yes
No
Yes
1
08/27/09
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: I received a total of 3 Botox treatments. The first treatment seemed to be the most effective and lasted approximately 8 months. My final Botox treatment in November 2008 lasted approximately 5 weeks. That final treatment seemed to cause the left side of my mouth to weaken and droop, making it look as though I had had a stroke. My decision to stop Botox treatments and seek MVD surgery was one of the best decisions I have ever made.

MVD Comments: Update as of 09/08/09 - My MVD surgery was successful ... I was spasm free immediately following surgery and continue to be spasm free ... and my smile has been restored to a full smile once again. Thank you, Dr. Sekula!!

Steve Barone

Scottsdale, AZ (USA)
Left
1996
Yes
No
Yes
2
08/15/02
Dr. Kris Smith
Phoenix, AZ (USA)
Yes

MVD Comments: Became "SPASM FREE" 18 months following MVD #2.
Edwin Barreiro

Ringwood, NJ (USA)
Left
2000
Yes
No
Yes
1
03/01/04
Dr. Chandranath Sen
St.Luke's-Roosevelt Hospital, New York, NY (USA).
Yes

MVD Comments: Loss 40-50% hearing in left ear. Would still recommend MVD even with hearing loss.
Greg Barton

Hartsville, TN (USA)
Right
2003
Yes
Yes
No





Botox Comments: Less effective after a couple of years of injections. (maybe 3 months of value now) Eyelid droops and cannot turn the right corner of my mouth upward. Botox is beginning to be less effective (now). Now considering stopping Botox and going for MVD surgery.
Barb Bartz

Pretoria (South Africa)
Right
1987
Yes
Yes
Yes
2
06/22/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary".(MVD #1 also with Dr. Jannetta on 04/01/04)

Bob Basque

Houston, TX (USA)
Right
1998
Yes
No
Yes
1
08/17/04
Dr. Robert Grossman
Houston,TX (USA)
No
Botox Comments: Botox(R) 40 units every 90 days in several places on the face: reduces the intensity of the spasm to 20% initially for 3-5 weeks then the positive effects diminish to no affect at all by 70 days post injections. Have tried Myloblok only once. Injections were more painful and the positive effects did not last more than 50-60 days vs 70 days with Botox.
Had muscle atrophy in the face from Botox but no other side affects at all. I responded to Botox well but am tired of driving one hour each way to have it done and see no end to this merry-go- round.

MVD Comments:

Joanne Batterberry

Spicer, MN (USA)
Right
1998
Yes
No
Yes
1
11/06/09
Dr. Michael J. Link
Rochester, MN (USA)
No
Botox Comments: Drooping of right eye lid and right side of face. It was very traumatic for me. It lasted for a good two months.

MVD Comments: Update as of 11/26/09 - I have experienced improvement in the spasms and am hopeful they will stop. Dr. Link said it sometimes takes a while to completely stop the spasms.

Lucille Beaudin

Winnipeg, Manitoba (Canada)
Left
1998
Yes
No
Yes
1
05/13/02
Dr. Anthony Kaufmann
Winnipeg ,Canada.
Yes

Botox Comments: Botox injection (twice)above and below the eye, upper cheek.The injection quieted the immediate area, however it worsened the extremities of the left eybrow and upper lip. The lip dooped even worse, the eye and eyebrow stretched upward profusely and the condition was worse than ever in terms of facial looks. The eye teared for approximately 3to 4 weeks.

MVD Comments 06/24/02: I have been spasm free since June 1, 2002. (My MVD was on May 14, 2002 and I had small spasms and flutterings just under the eye after surgery.) During the month of June I waited to test the waters in more stressful times and my face remains the same; very peaceful and quiet. I'm thankful every day to Dr. Kaufman and to all of you for your stories which guided me throughout tough times. I made the decision under much thought but I couldn't have followed through with surgery without all of you. I still experience some headaches.
Mary Lou Beck

Delray Beach, FL (USA)
Left
2005
Yes
No
Yes
1
08/07/08
Drs. Peter J. Jannetta & Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: First time was effective. the next six times, over the course of two years, had undesirable side effects of some facial paralysis, especially at the left side of my mouth. I had a distorted, one sided smile.

MVD Comments: Update as of 11/18/08 - My surgery was an immediate success, I am totally spasm free. Now for the downside. I had two compressed nerves. The #7 facial nerve creating the HFS and my vestibular nerve which created an equilibrium problem. I had complete facial paralysis on the left side of my face for about 4 weeks. Then very, very gradually I started to get some movement return. It has now been 15 weeks of recovery. My forehead, eye and upper cheek area appear normal. The lower half of my cheek and around my mouth have yet to return to normal. I've been assured that it will fully repair itself within due course. At least I see continuous improvement every week albeit very slowly. The recovery to my vestibular nerve has been a nightmare. For six weeks it felt like I was living within a tornado because it was the nerve that controls your equilibrium. I am happy to report that now, 15 weeks later, I am almost back to normal with my standing and walking. Bottom line - I would do the HFS surgery again in a heartbeat. I'm thrilled with the results.

Janine Bell

Maple Ridge, British Columbia (Canada)
Right
1997
Yes
No
Yes
1
07/18/05
Dr. Chris Honey
Vancouver, British Columbia, (Canada)
No
Botox Comments: June 14, 2001 (24 units) this worked well except for my eye was stuck open for three months or so. I had more Botox Dec 03, 2001 (11 units) and Dec 17, 2001 (4 units) and again March 15, 2002 (24 units), but these did not seem to work. I just had 12 units Nov 22, 2004 so I am waiting to see if it worked.

MVD Comments: Update as of 05/06/08 - I had been completely spasm and twitch free since my surgery in July 2005 until a couple of months ago when HFS reared its ugly head. It started gradually, but in the past couple of weeks some days the spasms start every time I blink. That may last for 5 to 20 minutes and then nothing for a little while and then all of a sudden my face will just start twitching in full spasm. Some days it's worse than others but it's not nearly as bad as before I had the surgery. I am just fearful that it will come back full force because it started off slowly a couple of months ago and seems to be getting worse.

Update as of 03/14/09 - Scheduled for MVD Consultation on 05/14/09 with Dr. Navraj S. Heran in British Columbia (Canada). Click here to see my "MVD Diary".

Roy Benear

Austin, TX (USA)
Left
2001
Yes
No
Yes
1
12/19/07
Dr. Louis Whitworth
Dallas, TX. (USA)
Yes

Botox Comments: At first, some relief, but over time, diminishing results.

MVD Comments:

Rita Benitez

Miami, FL (USA)
Left
1996
Yes
No
Yes
1
09/16/02
Dr. Albert Rhoton, Jr.
Gainesville, FL
No

Botox Comments: I tried Botox for 5 years, untill I developed immunization.

MVD Comments: I had my MVD on September 16, 2002 with Dr. Rhoton at Gainsville, FL. I still have twitches, I am to see Dr. Rhoton for follow up visit the week of October 21, 2002. I do not intend to have another MVD.

Don Bennett

Gloversville, NY (USA)
Left
2005
Yes
No
Yes
1
06/25/09
Dr. Thomas Lovely
Albany, NY (USA)
No

Botox Comments: Botox 3 times. I have some residual effects from Botox my left eye droops some and so does my left side of my mouth.

MVD Comments: Update as of 07/25/09 - I had my MVD three weeks ago and still have spasms. They seemed to ease up for week after surgery but I think that they are just as bad now as they were before the surgery. The doctor told me it could take up to six months to become spasm free. I am very discouraged at this point. I thought that I would wake up and be spasm free.

Jeannie Berger

El Dorado Hills, CA (USA)
Right
1999
Yes
Yes
No






Corena Berkbigler

Jackson, MO (USA)
Left
2005
Yes
No
Yes
1
04/17/08
Drs. Peter J. Jannetta & Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox dried my eye sockets out and had to use cream, Restasis and liquid tears from my eye specialist. Am off of the cream but still use the Restasis morning and night and the liquid tears whenever I need them.

MVD Comments: I got an appointment with Neurosurgeon Scott R Gibbs MD and he explained that he actually only performed 2 MVD and suggested we go to Pittsburgh, PA to Dr. Peter J. Jannetta, M.D. to have this surgery. He even flew to Pittsburgh to view my surgery and 4 others performed by Drs. Peter J. Jannetta & Raymond F. Sekula, JR. that very day. The results were amazing and I awoke “SPASM FREE”. My husband says I look like I did 2 1/2 years ago. My face is not drawn, my left eye is completely open, my mouth is normal and now my lower dentures do fit which I had to stop wearing them.

Iracema Bernardes

Lorton, VA (USA)
Right
1999
Yes
No
Yes
1
08/03/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Got tired of Botox because it made me look like a freak - one side is paralyzed. It's even difficult to drink from a cup. The injections hurt a lot. I haven't done it for 9 months.

MVD Comments:

Grete Berndt

Shawano, WI (USA)
Left
2000
Yes
No
No





Botox Comments: Had Botox in 2002. Stopped twitching but made my left side droop especially mouth and chin. Tried again in 2008. Left eye was noticeably more open than right and left lip drooped which made it somewhat difficult to speak and eat. Will not do it again.
Pat Berntsen

Lockport, NY (USA)
Right
1988
Yes
No
Yes
1
12/10/08
Dr. Elad I. Levy
Buffalo, NY (USA)
Yes
Botox Comments: I have been taking Botox shots for a few years. At first they worked well although the side effects are horrible. But now, they stop working sooner. The tics are getting worse.

MVD Comments: Update as of 11/03/09 - I can happily say that I continue to be spasm free. What a wonderful treat it is to be able to smile again. I have gotten so that I actually like it. I can not thank Jack, Wilma and this group for all of the information and support they have given me.

For details, click here to see my "MVD Diary".

Henri Berroteran

Tulsa, OK (USA)
Left
1998
Yes
Yes
No





Botox Comments: Controlled spasms but it impacted my speech. My lips wouldn't move correctly. My eyebrow was raised and during one experience my eye drooped. It corrected in a couple of weeks. I get teary eye.
Kurt Berry

Davisburg, MI (USA)
Right
2006
Yes
Yes
No





Botox Comments: First shots help for 30 days, second session had little results.
Wilma Bertling

Sebastian, FL (USA)
Left
2004
Yes
No
Yes
1
09/16/08
Dr. Elad I. Levy
Buffalo, NY (USA)
Yes

Botox Comments: One Botox treatment, no improvement.

MVD Comments: Update as of 09/17/08 - Successful MVD, hearing intact, no equilibrium problems and spasm free.

Jamal Best

Brooklyn, NY (USA)
Left

Yes
No
No





Botox Comments: I do not like botox. I hate needle.
Ginny Bierschenk

West Hempstead, NY (USA)
Left
1986
Yes
No
Yes
1
07/12/06
Dr. Chandranath Sen
New York, NY (USA)
No

Botox Comments: Controlled spasms in the beginning. Face became droopy - couldn't smile. After a while was no longer getting any effects (became immuned to the botox after so many years).

MVD Comments: As of 08/28/06 - Continuing to have intermittent spasms. Dr. said it may take up to 2 months for MVD to take effect.

Kirby Biggs

Garland, TX (USA)
Left
1996
Yes
No
No





Botox Comments: Do you twitch or does your face look paralyzed.
Rob Bindler

Farmingdale, NY (USA)
Left
2000
Yes
No
Yes
1
10/08/07
Dr. Chandranath Sen
New York, NY (USA)
Yes

Botox Comments: Eye tremor was relieved but terrible sagging and paralysis of the facial muscles (like Bells palsy) on the effected side.

MVD Comments: As of 10/09/08 - Sometimes I may get slight incidental spasms while drinking hot beverages or eating, but not frequent. Completely symptom free as of the end of February, 2008 (4.5 months after surgery.

Daz Bing

Nottingham (United Kingdom)
Right
1999
Yes
Yes
No





Botox Comments: Just had first injections April 2006.
Laurie Bird

Sherman Oaks, CA (USA)
Left
1992
Yes
No
No





Botox Comments: Botox, worked ok at first, gradually lasted less time.
Wendy Birnbaum

Coronado, CA (USA)
Left
2006
Yes
No
Yes
1
03/12/08
Dr John Alksne
La Jolla, CA (USA)
Yes

Botox Comments: some relief with facial asymmetry.

MVD Comments: Update as of 03/15/08 - Discharged the afternoon of 03/14/08. My husband took me errand/grocery shopping today. Will report on results in a few days as I feel real "spacey "and tired now.

Click here to see my "MVD Diary".
Betty Blake

Portsmouth, NH (USA)
Right
1998
Yes
Yes
No





Botox Comments: 06/01/05 - Just had first Botox treatment. Right eye won't close completely, dry and at the same time teary, blurred vision and still feeling spasms in cheek and mouth area.
Judy Bledsoe

Aberdeen, SD (USA)
Right
2007
Yes
No
Yes
1
12/30/09
Dr. Michael Link
Rochester, MN (USA)


Botox Comments: It has worked for me, but due to this being considered progressive by Dr. Link at the Mayo Clinic, I am leaning toward the surgery.

MVD Comments:

Jenny Spears Bobb

Gaithersburg, MD (USA)
Left
1998
Yes
No
Yes
1
01/24/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Needs treatment approximately every 6 months, after treatment lazy eye and blurry vision.

MVD Comments: Update as of 01/24/09 - I had my MVD on 01/24/08 and the good news is that I am “SPASM FREE”. During the surgery Dr. Jannetta and Sekula noticed that the posterior inferior cerebellar artery (PICA) was damaged which is the largest branch of the vertebral and the third main arterial blood supplies for the cerebellum. To correct the problem, the Doctor’s grafted PICA, which I can probably say, is why the dizziness/vertigo was present for several months which has now been resolved. Also an incision was made in my back to insert a tube that allows the fluid from my brain to drain. I came out the hospital 01/26/08 and saw Drs. Jannetta and Sekula on 01/28/08 before traveling back to Maryland. On 02/04/08 my primary care physician removed the staples. I am really thankful for those who assisted me in making my decision. It's a blessing to be spasm free.

Brian Bockoven
Former Memb.
Fort Dodge, IA (USA)
Left
2005
Yes
No
Yes
1
02/15/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I had shots every three months. The the short term effectiveness was not worth the 4 hour drive,(one way)dry eyes, lopsided face and the pain.

MVD Comments: Update as of 03/05/07 - Two weeks and three days after surgery and I am completely spasm free. I did have a few complications during surgery. The anesthesiologists had difficulty inserting the breathing tube (it took them an hour and a half). While they were trying different tools it caused bleeding in the lung and a blood clot in the lung, and eventually the right lobe collapsed - which they took care of at that time. I ended up on a ventilator through the night and stayed an extra day in the intensive care unit. That Saturday, two days following surgery, I was released from the hospital. I spent most of Saturday & Sunday recovering. Had a follow up appointment Monday morning and flew back to Iowa Monday night. Since then I have been experiencing light headaches, until just a few days ago when the headaches became more intense.

Angela Bond

Basingstoke, England (United Kingdom)
Right
2006
Yes
Yes
No





Botox Comments: 03/05/07 - Only had 2 doses so far but it is making symptoms worse rather than better, making me feel lopsided and conspicuous.

Update as of 11/01/07: I am hugely delighted to report that my spasm has disappeared after about 2 years. You cannot believe what a relief it is to have normal interactions again and not to feel that each day is a struggle against the spasms. My remission or reprieve has come about after my family doctor started playing about with my blood pressure medication. After about 2 weeks on Losartan 50mg daily (double the previous dose) I realised that things had improved. It took a while to sink in, but I have now been free of the eye and mouth twitch and pulling down of my right eye for about 6 weeks. I would hesitate to suggest that this drug will work for everyone, but it has worked for me and is possibly worth a try for others? For me the key seems to have been the increase in doseage. I do still have the occasional reminder of the twitch but it is 100 per cent better than it was.

Rosalee Bond

Wagga Wagga (Australia)
Right
2007
Yes
No
Yes
1
06/25/09
Prof. Andrew Kaye
Melbourne, Victoria (Australia)
Yes
Botox Comments: Eases the spasm, but get dry eye where eye does not close properly and still some spasms.

MVD Comments: Update as of 07/03/09 – The bad news is that the surgeon found that I had an aneurysm forming that had to be wrapped and quite a lot of movement was required. The result is that I have had no hearing in my right (HFS) ear since my MVD. They are not sure whether this will come back or not because it could be air around the ear. The main trouble has been that I have had double vision and they are still not sure if I had a stroke or not as my blood pressure went through the roof. The good news is that I have been spasm free since the operation

Colleen Boos

Calgary, Alberta (Canada),
Left
1998
Yes
No
Yes
2
03/06/07
Dr. Anthony Kaufmann
Winnipeg (Canada) Calgary, Alberta (Canada)
Yes

Botox Comments: After 6 years of botox, I had MVD surgery in Calgary which was not successful, I continued 3 more years on Botox and have found my face has become very sensitive and usually I'm overdosed and disabled for 2-4 weeks every 3 months.

MVD Comments: (2nd MVD, 1st on 11/07/03, with Dr. Kish)

Maureen Bourke

Melbourne (Australia)
Right
1994
Yes
No
Yes
1
05/31/07
Mr. Peter Dohrmann
Melbourne (Australia)
No

Botox Comments: Was effective but suffered several side effects including black eye, swollen eyelid, inverted eyelid.
Silvia Boyle

Lawrence, KS (USA)
Left

Yes
Yes
No





Botox Comments: So far so good, stopped spasm 90% - had injections 01-03.
Dan Boynton

Lincoln, MA (USA)
Left
1998
Yes
Yes
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Bryan Bradford
Inactive Memb.
Garland, TX (USA)
Left
1995
Yes
No
Yes
1
03/07/03
Dr. Jonathon White
Dallas, TX (USA)
No

Botox Comments: Botox injections - left face paralized - unable to smile.

MVD Comments: During the MVD, they discovered that the offending artery had grown a "branch" which had fused with the seventh nerve. The branch could not be removed without causing a stroke. They did insert sponges in a couple of places where the offending artery was pushing up against the seventh nerve. I have some relief but far from complete.

Joyce Bracey

Virginia Beach, VA (USA)
Both
1999
Yes
Yes
No





Botox Comments: Botox worked for some time then I did not see any difference but have kept on getting the shots every 3 months. I still have a hard time swallowing, eating and speaking.
Julia Bravo

Glendale, CA (USA)
Right
2007
Yes
Yes
No





Botox Comments: No side effects - first time it did not work as expected.
Susan Brendemihl

McKinney, TX (USA)
Right
1999
Yes
No
No





Botox Comments: Botox - very effective - but caused drooping of mouth and eye.
Cindy Brockman

Hamburg, NY (USA)
Left
2000
Yes
No
No





Botox Comments: It worked for me. I had some problems with my eye not shutting. Had to use a gel and eye patch.

Click here to see my "Personal HFS History".

Sharon Brott

Cincinnati, OH (USA)
Right
1989
Yes
Yes
No





Botox Comments: I can count on anywhere from 2 to 4 weeks of being pretty much spasm free after botox but also look like I have had a stroke if i smile or use any facial muscles.
Allan Brow

Toronto, Ontario (Canada)
Left
1999
Yes
No
Yes
1
05/13/08
Dr. Anthony Kaufmann
Winnipeg (Canada)
Yes

Botox Comments - Botox does help, but with droopiness.

MVD Comments: Update as of 01/04/09 – My MVD was on 05/13/08, almost eight months ago, and I’m now “Spasm Free”. It was a very difficult surgery according to Dr. Kaufmann and he did say it could take several months. For all the members that are post-op and waiting for the spasms to stop, have patience and don't give up hope.

Pat Brown

Amarillo, TX (USA)
Right
2000
Yes
No
Yes
1
07/09/09
Drs. Peter J. Jannetta & Ray Sekula
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox, effective for only a few weeks, the longest was about 6 weeks before wearing off. Cost prohibitive. Had a couple of bad experiences because dosage was too high. Even lower dosages affected my vision.

MVD Comments: Update as of 08/28/09 – It has only been six weeks, the only complications I had were nausea after surgery, and phlebitis in the arm used for IV. I still experience a "tug" at the incision site, and an occasional headache. I am so grateful for your website. God blessed me greatly and I feel so much better about myself and the way I look and have a much more positive outlook on life.

Janice Brueggert

Sidney, OH (USA)
Left
2003
Yes
No
Yes
2
11/13/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: 2 botox injections 5-15-05 & 9/14/05-did not like the result-did not have any more. May have eased the spasms, but make the face droop.

MVD Comments: Update as of 02/14/09 – I am still having some spasms – and they can be strong. I had noticed that I had something in my head – it turned out to be a staple – in fact there were three of them. I don’t know what would have happened if I had not noticed this – and later had an MRI. I am also having problems with back pain and am being treated by doctoring my local doctor.(MVD #1 also with Dr. Jannetta on 02/01/07).

Sharon Brott

Cincinnati, OH (USA)
Right
1989
Yes
Yes
No





Botox Comments: I can count on anywhere from 2 to 4 weeks of being pretty much spasm free after botox but also look like I have had a stroke if i smile or use any facial muscles.
Sara Bryant

Fort Campbell, KY (USA)
Right
2009
Yes
Yes
No





Botox Comments: first treatment looked ok but right eye drooped and symetery not right... just had 2nd treatment.. bruising and black eye with swelling ( was told had an allergic reaction) and severely distored between right and left side. Have very dry eye and droppy lid, mouth pulling downwards with spams still.
Nicola Burgon

Newcastle upon Tyne (United Kingdom)
Left
2009
Yes
Yes>
No





Botox Comments: So far I have received one dose of Botox injections and am currently awaiting my next injection.
Carolyn Burks

Arlington, TX (USA)
Left
1974
Yes
No
Yes
2
11/18/04
Dr. Robert Grossman
Houston,TX (USA)
Yes

MVD Comments: Update as of 10/22/05: Unfortunately I lost the hearing in the HFS side ear. Dr. Acosta (my neurosurgeon here in Arlington, TX. tells me that he believes most of the weakness on the hfs side will continue to improve. Unhappily, he was clear about the fact that my hearing will not return. He had discussed it all with Dr. Grossman (in Houston, TX (USA). Continue to have a bit of a CSF leak, but that is lessening, we believe.

It really has been quite an adventure. I was in the hospital for nine days. Had a pretty bad CSF leak, a lumbar puncture, bladder infection, overwhelming headaches and general discomfort. But, I’m still“SPASM FREE” a year later. I feel wonderful and would do it all again even if I had known these things were going to happen. Iam very lucky and very grateful!!! (MVD #1 with Dr. Acosta on 01/15/79).
Bonnie Burnham

Black River Falls, WI (USA)
Left

Yes
No
Yes
2
05/25/06
Dr. David G. Piepgras
Rochester,MN (USA)
Yes

Botox Comments: Not much help as the main muscle on that side of my face could not be injected, and of course that is the biggest problem.

MVD Comments: Update as of 05/25/07: Spasm free but have left side palsy that remains one year post-op. Had a procedure called Tarsoraphy to bring the bottom left eyelid up to prevent anymore injury due to dryness or anything airborne getting into the eye. I can close the eye somewhat, but not tight. To close the left eye I have to close both eyes. I'm very glad to be spasm free but wish I could get to full recovery and get more energy back.

For details, click here to see my "MVD Diary".

Shirley Burr

Minneapolis, MN (USA)
Right
2001
Yes
No
No





Botox Comments: Botox injected near the eye. Constant tearing for several days; dryness and aching; couldn't blink eye; double vision.
Russ Buysse

South Bend, IN (USA)
Left
2003
Yes
Yes
Yes
1
02/21/06
Dr. Hae-Dong Jho
Pittsburgh, PA (USA)
Yes

Botox Comments - No help

MVD Comments:

Laurence Cadorath

Bournemouth, (United Kingdom)
Left
1994
Yes
No
No





Botox Comments: First time had no effect. Tried again 6 months later and my left eyelid drooped for 4 weeks. Also my upper lip felt numb which took a long time to wear off. Will not be having any more injections.
Gwen Cameron

Aurora, Ontario (Canada)
Left
1996
Yes
No
Yes
1
02/26/08
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: It causes my eye to get very dry and sore so I use Natural tears for a couple of weeks after getting the shots. I get 5 around the eye areaand 3 in my lower cheek.

MVD Comments: Update as of 12/03/08 - After 9 months of my MVD I now consider myself to be “spasm free”. I haven’t had any spasms for a few months now but wanted to wait and be sure before I said anything. I want to thank all the HFSA members as if I hadn’t found the group by accident, I probably would not have had my surgery or had contact with all the wonderful people that I have met or spoken to since joining.

Joe Campbell

Riverside, CA (USA)
Left
2005
Yes
Yes>
No





Botox Comments: First botox treatment (07/08). It is keeping my eye open, but I can't blink and my eye is dry.
Lou Campbell

College Station, TX (USA)
Right
1995
Yes
No
Yes
1
06/16/04
Dr. Richard Harper
Houston,TX (USA).
Yes

Botox Comments: Tried Botox one time, had a droppy eye and face for weeks and it affected my vision so I did not try it again.

Click here to see my "Personal HFS History".

MVD Comments As of 06/27/04: Developed a CSF (cerebrospinal fluid leak) day 7 after my surgery. For those of you who having the surgery in the near future, REST IS ESSENTIAL..... I did not have any of the post op side effects and felt so good that I was over doing it. Dr. Harper put me on complete bed rest for 48 hours exactly one week after surgery. The leak did not stop so he added another 48 hours with the idea of me going back to Houston if the leak didn't stop. After the 3rd day of bed rest BINGO --- it stopped.
Paula Camping
Inactive Memb.
Peoria, AZ (USA)
Right
2001
Yes
No
Yes
2
10/16/06
Dr. Robert Spetzler
Phoenix, AZ (USA)
Yes
Botox Comments: Helps very little,terribly dry eyes & I have some drooping, but it's not real noticeable. I do have a good Dr. that gave me the shots but I am to the point that I no longer want to mask the problem I want to fix it.

MVD Comments: (MVD #1 on 06/15/04 also with Dr. Spetzler)
Linda Cannon

Mart, TX (USA)
Left
2003
Yes
Yes
No





Botox Comments: Initial Botox injections causing severe drooping of eye to the point of taping it open. Botox works well sometimes and sometimes too well never last longer than two months at the most. Have been getting it put directly in eye lid has the most effect but is unbearably painful, left side of face now droops all the time have some speech and drooling problems Doesn't seem to last long enough to make up for the pain and the cost.
Britt Caple

Birmingham, AL (USA)
Right
1999
Yes
Yes
Yes
1
11/21/01
Dr. Swaid Swaid
Birmingham, AL (USA)
Yes
Botox Comments: Update as of 11/07/07 - In October 2007 I re-started Botox at the eye foundation in Birmingham Alabama. So far I'm very happy with the results this time. Dr. Swede suggested giving Botox another try before opting for another MVD.

MVD Comments: Was Spasm Free for 4 years before they returned.
Vickie Capps

Albany, IN (USA)
Left
1996
Yes
No
Yes
1
06/10/04
Dr. Mitesh V. Shah
Indianapolis, IN (USA).
Yes

Botox Comments - Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: As of 06/12/07, I never really noticed when the spasms went away, it was so gradual. It is great not to have a jerky face any more.
Danna Caraway

Cordova, AL (USA)
Left
1999
Yes
No
Yes
1
12/05/02
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I have had two injections.The first was effective about 5 months and the second about 4 months.I have a deep ache in my eye after the injections and a lot of dryness, but the eye spasms stop.The left side of my mouth pulls at times.

MVD Comments: For details, click here to see my "MVD Diary".

Dervil Carey

Yonkers, NY (USA)
Right
1999
Yes
No
Yes
1
02/10/06
Dr. John Boockvar
Manhattan, NY (USA)
No

Botox Comments: Stopped spasms but my face still looked distorted.

MVD Comments:

Jenny Carmack
Inactive Memb.
Burlington, KY (USA)
Left
1998
Yes
No
Yes
1
12/05/05
Dr. George T. Mandybur
Cincinnati, OH (USA)
Yes
Botox Comments - Botox shots every 3 months 18 on left side of face and 5 in my left eye all with great results but only last a few weeks and then the beast wakes up mad and makes up for the lost time. It is painful at times as well.

MVD Comments: Update as of 09/15/06 - Lost all hearing on my MVD side and still in bed 24 hours a day because of dizziness beyond belief and I vomit all the time. I had success with MVD but came out of surgery permanently deaf on MVD side and dizzy 24-7 and been in bed every day since surgery.

Craig Carr

Cape Coral, FL (USA)
Right
2006
Yes
No
Yes
1
04/20/09
Dr. Siviero Agazzi
Tampa, FL (USA)
Yes
Botox Comments - was given BOTOX shots (5 in all, from 2.5 to 5 units) by the nuerologit mentioned above, so I am still feeling the effects. I DO NOT WANT TO DO IT AGAIN. The droopy mouth is not working for me and I can still feel the tightness and spasm, so its strictly to stop the twitching, which is a vanity thing anyway. Well, the droopy smile is no better than the twitching!

MVD Comments: For details, click here to see my "MVD Diary.
Brian Carter

Essex, England (United Kingdom)
Left
1982
Yes
Yes
Yes
1
07/16/09
Mr. Jonathan Pollock
Essex, England (United Kingdom)
No

Botox Comments: I have begun to look like a stroke victim!

MVD Comments: Update as of 09/17/09 - Now 8 weeks post surgery, although I’m not spasm free yet, significant improvements are apparent. Not surprised since I have had HFS for 25 + years. I am optimistic that things will continue to improve.

Carol Casey

St Louis, MO (USA)
Left
2005
Yes
Yes
No





Botox Comments: Have had 2 botox treatments, so far, so good, Treatment at Washington University, Barnes Motion Disorder Center, St. Louis, MO (USA).
Chris Cassirer
Inactive Memb.
Virginia Beach, VA (USA)
Left
1996
Yes
No
Yes
1
11/30/00
Drs. Kassam & Horowitz
Pittsburgh, PA
Yes


Pie Castillo

Quezon City (Philippines)
Right
1997
Yes
Yes
No





Botox Comments - Effective but for a moment only.
Patricia Cavalier

Dahlonega, GA (USA)
Left
1998
Yes
No
Yes
1
09/16/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox: very painful, I hated having my face "frozen" and I still have "lumps" from some of the injections....1 year later.

MVD Comments: I have suffered high blood pressure for over 20 years. Dr Janetta found the artery touching my facial nerve was also touching the nerve responsible for the high blood pressure. He fixed both. He said I should expect my blood pressure to begin to drop in 3-4 months.
Stefi Celie

Breda, Noord-Brabant (Netherlands)
Right

Yes
Yes
No





Botox Comments: Wears out very quickly.
Fred Centrella

Prospect, CT (USA)
Right
2003
Yes
No
Yes
1
07/16/07
Dr. Kenneth Vives
New Haven, CT (USA)
No

Botox Comments: OK at first but became progressively less effective. Also there was an injection miscue twice resulting in more extreme eyelid droop.

MVD Comments: Update as of 08/12/07 - Spasms are still occurring but lessening in frequency & intensity.

Joyce Cerneka

Arlington, TX (USA)
Left
1988
Yes
No
Yes
3
07/23/98
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: Did Botox for over two years; at first had good results, gradually my face got weaker and weaker. In hindsight, I would not have done the Botox. if you do Botox, make sure you have someone very good administering the injections; once I had a doctor who didn't and he temporarily paralyzed my mouth. I feel that Botox has its place in this world, but for me, I was such a severe case that it didn't do any good.

Post MVD Conditions - titanium mesh corner turned up, was puncturing skin and had to be rounded off. Had to cut skull, not invasive surgery.
John Cerovac

Joliet, IL (USA)
Left
2006
Yes
Yes
No





Botox Comments: I'm getting my injections at 3 month intervals through Rush's Movement Disorder Clinic (Dr. Katie Kompoliti). Treatments are very effective, although it is strange to "feel the twitch" yet have no visible spasm. While there is some asymmetry as far as my smile goes, Dr. K is tweaking each treatment to find the sweet spot. I'd rather have that than some of the "use the whole syringe" approaches I've seen mentioned here.
Song Chaney

Harker Heights, TX (USA)
Left
2004
Yes
Yes
No





Botox Comments: I have had botox injections on four occasssions. The effectiveness of botox is decreasing, but side effects are getting worse. Effects include drooping of left eye and paralysis around the mouth. Last injection was on March 28, 2008.
Sandra Chapman

Worcester (United Kingdom)
Right
2004
Yes
Yes
No





Botox Comments:
Audrey Charles

Los Angeles, CA (USA)
Left
2006
Yes
Yes
No





Botox Comments: On 12/18/06, I was injected with a mild version of Botox at Kaiser Hospital. It did nothing. I got my second round on 04/04/07, this time it was a lot stronger. Some facial muscles are paralyzed as expected but the twitching still goes on. It's now 13 days and the results are not very gratifying. My face is peeling, I have difficulty smiling, I cannot move the chewed food from the left to the right side of the mouth without assistance, and I can’t open my mouth wide to floss the molars or to bite off two slices of bread.
Suresh Chaudhry

Missouri City, TX (USA)
Right
1999
Yes
Yes
No





Botox Comments: The effect lasts for 2 months or so, but there is excesive droopiness.
Peter Chen

Rochester, MI (USA)
Right
2002
Yes
No
No





Botox Comments:
Margaret Chin

(Singapore)
Left
2001
Yes
No
Yes
1
09/04/07
Dr. John Thomas
(Singapore)
Yes

Botox Comments: good for few months.

MVD Comments: Update as of 09/11/07 - Woke up “SPASM FREE” and remain so today. Immdiately after my operation I woke up with double vision which made me panic. But, as the day wore on, the double vision went away. If anyone is looking for a good neurosurgeon in Asia, I highly recommend Dr. Thomas.

Izzie Chow

Markham, Ontario (Canada)
Left
2004
Yes
No
No





Botox Comments: tried botox twice. the first time was effective. after the second treatment, my left eye would not close for 2 months, had to use gel and eye patch. will not use botox again
Frank Cipollina

Rosedale, NY (USA)
Right
1989
Yes
No
Yes
1
08/23/99
Dr. Chandranath Sen
New York, NY
Yes

Botox Comments: After only 4 treatments, spread out 6 months apart, it no longer had the same effect. Decided not to get anymore after treatment of 8/98.

Post MVD Conditions - None
Kim Cisecki

Saskatoon, Saskatchewan (Canada)
Left
2004
Yes
No
Yes
1
09/24/07
Drs. Daryl R. Fourney & Stephen J. Hentschel
Saskatoon, Saskatchewan (Canada)
Yes

Botox Comments: Botox worked for a few weeks but left my left upper lip permanently paralyzed.

MVD Comments: Update as of 01/04/08: I had dizziness and a full ear for about a month after my surgery but otherwise I was back to normal. I was getting some spasms when I was stressed or very tired. I now consider myself to be 100% spasm free.

Elizabeth Clark
Inactive Memb.
Independence, MO (USA)
Left
2001
Yes
No
Yes
1
12/13/05
Dr. Jonathan Chilton
Kansas City, MO (USA)
Yes

Botox Comments: Botox once. Paralized side of mouth. It was effective.

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary".

Sue Cohen

Spring Valley, NY (USA)
Left
2005
Yes
No
Yes
1
06/29/09
Dr. Chandranath Sen
New York, NY (USA)
Yes

Botox Comments: Temporary partial improvement. Weakening of left side; expressionless; couldn't close eyelid for several weeks.

MVD Comments - Update as of 11/04/09 - I have occasional days of frequent middle ear “fluttering, and just this week I've had two small spasms. I'm so grateful for this new life.

For details, click here to see my "MVD Diary".

Marge Collins

Palm Coast, FL (USA)
Right
2000
Yes
No
No





Botox Comments: After first series of injections, I had drooping eye and mouth. My eye would open when trying to sleep and mouth would drool. After 2 months it began to wear off. I have not used it again.
Myra Comrie

Saskatoon, Saskatchewan (Canada)
Right
2008
Yes
No
No





Botox Comments: made no difference
William Conklin
Inactive Memb.
Beaufort, TX (USA)
Right
1996
Yes
No
Yes
2
12/01/03
Dr. Sunil Patel
Charleston, SC (USA)
Yes

Botox Comments: Botox treatments twice in 1996 - spasms stopped, but eye was droopy and would not close completely.

Post MVD Conditions - MVD #1 also with Dr. Patel on 04/14/03. Spasms decreased/stopped for about 10 days then returned completely if not worse than before. Significant vertigo for approx. 4 weeks; was given meclazine (sp?) which helped immensely. Vertigo free after 6 weeks. A major staph infection occured at the incision site which took 2 rounds of keflex and 2 rounds of cipro to clear up. Dr. Patel believes that the teflon patch must have slipped or pushed out of place due to the swelling associated with the staph infection. He is confident the 2nd MVD will be successful and will be pro-active and start super antibiotics immediately considering the infection from the 1st MVD.

Karol Conn

Highland, IL (USA)
Left
2000
Yes
No
No





Botox Comments: Worked for a couple of treatments then it was just hit and miss if they worked, then not at all. It has been almost a year since my last injection, I am now just beginning to be able to smile with the left side of my mouth.
Gerry Connolly
Inactive Memb.
Washington, DC (USA)
Right
1990
Yes
No
Yes
1
04/19/01
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I started on Botox in 1992. I received injections 3-4 times a year over the next 10 years. The injections were above and below the eye, as well in the eyelid itself. When I started the injections, my doctor, Preston Calvert told me about the work that Dr Jannetta was doing in Pittsburgh. He even gave me reprints of articles written by Dr J. But being a devout coward, I opted for Botox instead of Dr J. If only I had opted for Pittsburgh 10 years ago, I would not have had such a tough time over this decade. The Botox left me with a frozen face for a week or so then loosened up and I got relief for 2 months, then I started to slide back until the rightside of my face was in spasm again.

Post MVD Conditions - None
Jamie Coplin

Hastings, MI (USA)
Left
2005
Yes
No
No





Botox Comments: The Botox did little for me. I only did one treatment and decided it was not for me. It left extreme sensitivity to light for several weeks and burning in the eye. It did not help much with the HFS at all and I did not like they way I looked with the Botox.

MVD Comments: Scheduled for MVD Consultation on 03/30/06 with Dr. Byron G. Thompson Jr, University of Michigan Hosp., Ann Arbor, MI (USA)

Laurie Corley

Cantonment, FL (USA)
Left
2005
Yes
Yes
No





Botox Comments: I'm on my first round of Botox(5 days ago) the neurologist said it could take up to two weeks to work as of now my face is still twitching.
Wanda Covey

White Cloud, MI (USA)
Right
2004
Yes
Yes
No





Botox Comments: Botox eases the spasm, but only lasts 5-6 months. In my case helps a lot because it's driving me crazy. 1st time around whole side could not smile. 2nd around eye. eye droped for about 2wks then on one noticed.going for 3rd in January 2007.
Beverly Cox

San Antonio, TX (USA)
Left
1990
Yes
No
Yes
1
06/19/97
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

Post MVD Conditions - None

Jill Crawford

Louisville, KY (USA)
Left
2004
Yes
Yes
Yes
1
11/03/05
Dr. Jonathan Hodes
Louiville, KY (USA)
No

Botox & MVD Comments: Update as of 11/3/08 - Spasms returned about 1 1/2 years after surgery. Not as bad as prior to the surgery but irritating enough to lead me to try Botox. I am still having spasms and am still taking botox injections about every 8-10 weeks.
Ann Cregan

Wyboston, Bedford (United Kingdom)
Left
2004
Yes
Yes
No





Botox Comments: Started April 2005. Slight reduction in intensity of spasms thus reducing pain but not yet on full dosage.

For details, click here to see my "Personal Botox Experiences".

Deb Cuminotti

Avon, IN (USA)
Left
1984
Yes
No
Yes
1
08/06/09
Dr. Aaron A. Cohen-Gadol
Indianapolis, IN (USA)
Yes

Botox Comments: I've been getting botox in A injections for 15 years. Botox is a band-aid, and then I'm not sure which is worse, since I then am commonly asked if I have Bell's Palsy.My left eye won't close for about three weeks after my injections, which is very painful, and I continually bite my lip and jaw. I've tried doing without the shots, but the migraines increase, and I can't see for all of the twitching. I started having a reaction to the botox at my last doctor, breaking out in hives, and getting a rash. Every time I called, he said it wasn't possible. My next doctor told me it was very possible.

MVD Comments: Update as of 08/08/09 - Released from the hospital on 08/08, I’m home, doing well, with very little pain and spasm free.

Connie Cutler

Palatine, IL (USA)
Right
1995
Yes
No
Yes
2
03/17/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I hated it, the side effects were worse than the twitches. My eye closed for about a month and my mouth got droopy. I looked like I had suffered a stroke.

MVD Comments: For details, click here to see my "MVD Diary". (MVD #1 on 02/13/04 with Dr. George Bovis - Loss of upper tones of hearing on affected side).

Rodger Cutler

Beaverton, CO (USA)
Right
2000
Yes
Yes
No





Botox Comments: My right eye does not close as much during a spasm after the Botox treatment. The only side effect is mild muscular weakness.
Charlene Dane
Inactive Memb.
Toledo, OH (USA)
Right
1987
Yes
No
Yes
2
12/15/94
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Some help, wore off in 6 wks. and kept my right eye from closing and made my face look funny.

MVD Comments - Severe hearing loss on right side after 1st MVD in July 1994 with Dr. Lovely. After the 2nd MVD was spasm free for 9 years until the spasms returned beginning August 2003.

Julie Dang
Inactive Memb.
Toronto, Ontario (Canada)
Left
1994
Yes
No
Yes
1
09/04/03
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Botox injections from 2000 to Dec.2002. I had 4 injections in total. It helped at the begining but the last 2 injections I had to increase the dosage. Found the spasms had increased so I decided to have MVD but I had to wait for 9 months.

MVD Comments - There was a vertebra artery compression on my facial nerve entry zone region. RESULT - Total success, woke up NO SPASMS. Headache gradually gone about 5 weeks. Full ear (mild) about 7 weeks. Thanks Dr.Kaufmann, his team and "Circle of Friends".

Keith Davie
Inactive Memb.
England (United Kingdom)
Right
2000
Yes
No
Yes
1
02/11/04
Mr. Nigel D. Mendoza
London, England (United Kingdom)
No
Botox Comments: Tried Botox injections for one year. No real improvement after quarterly injections. No real side effects.
Carol Davis

Grayling, MI (USA)
Left
1998
Yes
No
Yes
1
10/05/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: It doesn't last long, maybe 6 weeks before the spasms become really annoying again. I didn't care for the way it affected my eye (open wide, not blinking like my right eye). Also, it affected my smile. I can't believe people have these shots for cosmetic purposes! I find them painful!!

MVD Comments: For details, click here to see my "MVD Diary.

Phyllis Davis

Crossville, TN (USA)
Left
1994
Yes
No
Yes
1
07/22/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Effective but paralized the left side of the face.

MVD Comments: Spasm Free for 17 months.
Sue Davis

Channahon, IL (USA)
Right
2000
Yes
No
Yes
1
04/30/07
Dr. Gail Rosseau
Chicago, IL (USA)
No

Botox Comments: The first few treatments gave some relief; the past year, treatments have been ineffective. Final botox treatment was on 01/24/07.

MVD Comments: Scheduled for MVD #2 Consultation on 12/21/09 with Dr. Kenneth F. Casey, Oakwood Southshore Medical Center, Trenton, MI (USA) (MVD #1 with Dr. Gail Rosseau on 04/30/07).
For details, click here to see my "MVD Diary.

John Dayton

E. Northport, NY (USA)
Left
2007
Yes
No
No





Botox Comments: Botox injections helped reduce spasms a lot for three months but that was eight months ago and my mouth still isn't back to smiling on the left side.
Roxanne Davis

Oakland, NJ (USA)
Left
1995
Yes
Yes
No






Botox Comments: Have been receiving Botox injections since 1997,about 7 years.Over this period of time,it has slowed down the rate of the spasms. Pulling to the side of the mouth and cheek area happens with a much tighter hold. The spasms now are felt more inside. Partial relief has been varied, sometimes, 2,3,4, or 6 mos. depending upon each treatment. Have had temporary side effects such as some paralysis of mouth muscle,and double vision. Since the face muscle becomes tighter and the spasms occur more internally; self-image concerns in public are always on your mind.
Sue Davis

Channahon, IL (USA)
Right
2000
Yes
Yes
No






Botox Comments: The first few treatments gave some relief; the past year, treatments have been ineffective; I plan to discontinue Botox.

MVD Comments: Scheduled for MVD on 04/30/07 with Dr. Gail Rosseau, Chicago Institute of Neurosurgery & Neuroresearch, Chicago, IL (USA).

Missy Dean

Sidney, OH (USA)
Right
2003
Yes
No
Yes
1
-3/25/09
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: was receiving Botox injections every 3 months with decreasing effectiveness, last injection was May 2008. Worked for 2 years.

MVD Comments: Update as of 03/26/09 - I woke up spasm free with no hearing loss! Dr. Sekula found a very large artery on the nerve and one smaller vein and was able to take care of both. I was discharged from Allegheny General today. My husband and I are spending the night in a hotel in Pittsburgh and will be heading for home tomorrow (4 1/2 hour drive). I think he is allowing me to head for home because my mom is a nurse and my family Dr. has one other patient who also had this surgery in Pittsburgh. My neck is very stiff and my head does hurt but the Percocets are helping by putting me to sleep!! I'm ready for a nice, peaceful recovery. Being spasm free is almost unexplainable - it is definitely the answer to my prayers and I will always be eternally grateful to Dr. Sekula for his skilled hands!

Delann DeBenedetti

Tucson. AZ (USA)
Right
2003
Yes
No
Yes
1
01/21/10
Dr. Amin Kassam
Santa Monica, CA (USA)


Botox Comments: Botox worked when only my eye was involved, not I've not had good results since the spread of the spasms. I have not had Botox since May as I feel it's time to have the MVD surgery.

MVD Comments:

Ed Demo
Inactive Memb.
Vernon, NY (USA)
Right
1985
Yes
No
Yes
1
01/01/02
Dr. Chandranath Sen
New York, NY
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Post MVD Conditions: Had a bout with meningitis but I am back on my feet

Zenaida Depadua

Chatsworth, CA (USA)
Left
2001
Yes
No
No





Botox Comments: Botox injection every 3 months since 4 years ago. For this long years I have been doing it I noticed that it is not doing me any good anymore. It is not really effective because my face expression, especially when smiling, is like a smirk. My face looks awful. My left eyelid has drooped a lot.
Maureen DeStefano

Hampton Bays, NY (USA)
Right
1997
Yes
Yes
No






Botox Comments: For details, click here to see my "Personal Botox Experiences".
Sue Deutser

Houston, TX (USA)
Left
1991
Yes
No
Yes
1
02/14/05
Dr. Richard Harper
Houst,TX (USA)
No

Botox Comments: Dry eye, drooping lower lid, trouble with eye not closing. Botox, mimimal help- trouble with eye staying open for over a month because of too much Botox.

MVD Comments:
Dian Dimmery

Cardiff (United Kingdom)
Left
1997
Yes
Yes
No





Botox Comments: Treatment carried out approx. every 2 months. Good results around eye, but treatment of cheek, mouth and neck not very effective.
Kristine Dishman

Folsom, CA (USA)
Right
2003
Yes
Yes
No






Botox Comments: Botox every 3 months for the last year has worked well but sometimes I over-respond and get weakness. My injectionist and I have discovered that the first time a new muscle area is injected I seem to get profound paralysis so now we do half the usual dose in any new area. The first time we treated my eyelid I couldn't blink for almost a month! But we've got that dialed in perfectly now. It is definitely an art and there is no "recipe" or one sizze fits all.
Suzanne Disse

Knoxville, TN (USA)
Left
1986
Yes
Yes
No






Botox Comments: Get Botax injections every three months. At first great, but now it only last about two months and makes my face stiff.
Simon Dixon

Santa Barbara, CA (USA)
Left
2004
Yes
No
Yes
1
09/26/07
Dr. John Alksne
La Jolla, CA (USA)
Yes

Botox Comments: I'm done with Botox. (Had what will be final shots a month ago) Aside from the pain of the procedure I hate the way it looks. Friends joke "wow Botox lucky you". And I say "yeah, I look like I'm great for my age aside from the stroke I appear to have had" Biting my lip and drooling are really helping my Boris Karloff routine though, so that's a bonus...

MVD Comments: Update as of 01/10/08 – Spasms completely disappeared after a few weeks. These days I sometimes get a tingling around my eye when I am stressed, but I used to get that before HFS and many others get it too. I would not think of it at all if it were not for my history.

Randall Dobbs

Kennesaw, GA (USA)
Right
1997
Yes
Yes
No






Botox Comments: I have had two heavy botox sessions with little or no benefit.
Bonnie Dodd
Inactive Memb.
Cranberry, PA (USA)
Right
1999
Yes
No
Yes
2
10/16/02
Drs. Kassam & Horowitz
Pittsburgh, PA
No

Botox Comments: Eye would not completely close. Cheek and lip movements increased. MVD Comments - MVD #2 with Drs. Kassam & Horowitz, UPMC, Pittsburgh, PA. (MVD #1 also with Drs. Kassam & Horowitz on 05/22/02).
Vickie Dodds

Columbus, OH (USA)
Right
2001
Yes
Yes
No






Botox Comments: Botox Comments: For details, click here to see my "Personal Botox Experiences".
Bill Donahue

Herington, KS (USA)
Right
1999
Yes
No
Yes
1
04/24/09
Dr. John Dickerson
Wichita, KS (USA)
No

Botox Comments: Botox Comments: It works for several weeks then wears off, short term relief.

MVD Comments: Update as of 04/29/09 - Lots of pain, nausea, vertigo, but the spasms around the eye were not as strong or persistant. Also found out I should not take morphine as it caused more nausea. Didn't eat well and 5 days later still not eating as usual. I am still having spasms ... not as severe and not as regular but I woke up this morning with spasms for several hours. My right ear is ringing louder but Dr. Dickerson says that is a good thing as that shows the eighth nerve is coming back. He told me that he had never seen a nerve as damaged as mine as the vessel had split the nerve and had snaked it's way along the length of the nerve. It is going to take longer than anticipated for recovery. Still dealing with the vertigo and some nausea and the appetite issue. Seems this is not quite a miracle cure, but I believe with time and patience I will get better and this ordeal will be worth it. Still praying and still hoping.

Richard Donnelly

Arlington, VA (USA)
Right
1992
Yes
No
Yes
1
04/04/01
Drs. Kassam & Horowitz
Pittsburgh, PA
Yes

Botox Comments: Was effective in the beginning when just the eye twitched. It was not helpful when the face became involved. I believe Botox may be useful for controlling blephorspasms but not particulary for HFS.

MVD Comments: For details, click here to see my "MVD Diary".

Alice Donohue

Lansing, MI (USA)
Left
1988
Yes
No
No





Botox Comments: Had two shots - the first one on 09/26/03 seemed to help. I hated the second one on 12/13/03 (terrible).

Click here to see my "Personal HFS History".

Veta Dowdy

Tallahassee, FL (USA)
Left
1994
Yes
Yes
No





Botox Comments: Botex works wonderful ...when I can get my insurance to cover it.
Jeff Downing

St. Louis, MO (USA)
Right
2000
Yes
Yes
No






Ann Doyle

Owensboro, KY (USA)
Right
1996
Yes
Yes
Yes
1
10/06/00
Dr. Peter J. Jannetta
Pittsburgh, PA
No

Botox Comments: Takes Botox® for Blephrospasm, not MVD related. Very effective so far. I've only had it twice. Upper lip seems slightly numb.

MVD Comments - The continuing spasms are the result of Blepharospasm, not HFS.
Bonnie Driskill
Inactive Memb.
Kingwood , TX (USA)
Left
2003
Yes
No
Yes
1
07/09/07
Dr. Richard Harper
Houston,TX (USA)
Yes

Botox Comments: Not satisfactory. The injections either had little effect or had too much effect in controlling the spasms. Too much Botox left eye wide open and side of face flat. It did, however, help with the neck spasms. MVD Comments: As of 07/13/08 - At this time I do not have any spasms and feel wonderful. The spasms were really bad right after the surgery and for 6 months after. Then they were completely gone for 2 months and then returned only when I talked or smiled (social oppression). For the last 3 weeks, I have not had any spasms and everything seems completely "normal". I love it!
Feza Duchaine

Huntington Beach, CA (USA)
Left
2007
Yes
Yes
No





Botox Comments: tried botox recently, left eye completely closed, still not totally normal.
Hélène Ducharme

Ottawa, Ontario (Canada)
Left
1986
Yes
No
Yes
3
03/27/02
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

MVD Comments: (2nd MVD 03/14/01 also with Dr. Kassam; 1st MVD 09/30/99, Dr. Gentili, Toronto (Canada)).
Steve Duffy

Lumberton, NC (USA)
Right
1992
Yes
No
No





Botox Comments: Botox Comments: For details, click here to see my "Personal Botox Experiences".
John Dunn

Downingtown, PA (USA)
Left
2004
Yes
Yes
No





Botox Comments: Just had first Botox A shots end of September 2005, still have some effects - to early to know - no side effects yet.
Karen Dunn

Cincinnati, OH (USA)
Left
1989
Yes
No
Yes
1
11/17/04
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: I have had Botox injections for the past 5 years with much success. I have a wonderful neurologist, Dr. Zadikoff, who placed the shots just right. However, he noticed that I was beginning to have facial weakness and urged me to have the MVD that I have been putting off.

MVD Comments:

Cecilia Durand

Brussels (Belgium)
Left
1998
Yes
No
Yes
1
07/16/07
Prof. Jacques Magnan
Marsielle (France)
No

Botox Comments: I had botox for 3 years. I had the injections every 3 months and had my last ones 3 months before MVD. I could not live without them but hated how my HFS eye would dry and the fact that it paralysed my HSF side and I could not smile properly.

MVD Comments: Update as of 02/10/08 - Update as of 02/10/08 - Not spasm free yet. However the spasms are not as bad as before MVD, but they still bother me quite a lot.

Jessica Dyer

Lima (Peru)
Left
2004
Yes
No
Yes
1
09/14/07
Dr. Alberto Trelles
Lima (Peru)
Yes>

Botox Comments: I really use it for sthetic, but also help me to diminish in some way the spasm in the upper side. None since December 2006.

MVD Commenrs: Update as of 09/22/07 - One week post-op I can say it was successful. I stayed in the Clinic about 5 days, and I'm now back at home, feeling good. The only issue is that I have hearing loss in my left side that makes me disoriented. I have very little mild spasms, that are very infrequent, and the doctor told me that it would disappear at any moment. Today I still have headaches, mainly in the morning, but I don't have migraines, metal taste or facial paralysis. I can say I'm now “SPASM FREE”.

Sharon Dyrland

Dunkirk, MD (USA)
Left
2006
Yes
No
Yes
1
07/01/09
Dr. Michael Horowitz
Pittsburgh, PA (USA)
Yes

Botox Comments: Very effective for around 2 months - eye gets dry, irritated for a week after injection.

MVD Comments: Update as of 10/01/09 - I made it through the operation with flying colors and woke up and continue to be spasm free!! However, I have no measureable hearing in the MVD ear. Unfortunate, but I knew the risks going in. It is still worth it to be spasm free!

Wayne Earle

Red Deer, Alberta (Canada)
Left
1990
Yes
Yes
No





Botox Comments: 50-75% effective, double vision for a month, dryness of the eye, eye has closed on occasion.
Carol Eaton

Washington, MI (USA)
Left
1985
Yes
No
Yes
1
05/12/06
Dr. Daniel Pieper
Southfield, MI (USA)
Yes

Botox Comments: Botox quieted the twitches but of course I have facial drooping and lop sided smile. Sometimes I just had the botox around my eye so that I didn't have too much droop and could still smile a bit. I've had botox since 1993.

MVD Comments: For details, click here to see my "MVD Diary".

Jonathan Edwards

Hendersonville, NC (USA)
Right
2006
Yes
Yes
Yes
1
06/27/08
Dr. Anthony Asher
Charlotte, NC (USA)
No

Botox Comments: Don't like Botox. The first treatment worked okay but made the right side of my lip droop and I couldn't smile. The second treatment has closed right eye.

MVD Comments: Update as of 07/05/08 – I would like to say the spasms are better. I'm not really sure they are. They seem more infrequent. I didn't have a single one yesterday but they were back today. I'm keeping a positive attitude on that front. The doctor basically told me when I was discharged that the vessel splits in two and really is tangled with the auditory nerve. He stopped messing with it when the auditory nerve showed stress. He is pretty confident he could stop the twitching but it would pretty much involve losing hearing. We are discussing this during the appointment. So it's possible I'll be having another MVD in 4-8 weeks. That would be done to avoid going through scar tissue. All in all my spirits are good and I'm get along much better than I expected.

Ann Ehlen

Glenmora, LA (USA)
Left
1995
Yes
No
Yes
1
05/13/02
Dr. Anil Nanda
Shreveport, LA
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary".

Margy Ehrenfried

Norfolk, NE (USA)
Right
2001
Yes
No
Yes
1
11/10/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments:
Anne El Shazli

Washington, DC (USA)
Left
1993
Yes
No
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Steve Eiseler

Traverse City, MI (USA)
Left
2007
Yes
No
Yes
1
09/17/08
Dr. Kenneth F. Casey


Botox Comments: Work in progress.

Click here to see my "Personal HFS History".

MVD Comments: Update as of 10/08/08 - I had five offending vessels and Dr. Casey was able to reduce the lateral spread by 50% during the procedure. I was released to return home the next day. Unfortunately I was one of the 5-8% to develop aseptic meningitis a week after surgery. My understanding is the condition was caused by an allergic reaction to the teflon felt material used to pad the nerve. After being on a heavy dose steroid for a few days I developed irregular heart beats and the dose had to be reduced. I was able to return to work a few hours today and plan to return full time next week. I lost some hearing on my MVD side but hopefully it is temporary and in fact it has improved over the last 3 weeks. As far as the spasms are concerned, the only thing that I have noticed is a slight pull at the corner of my mouth occasionally. Dr. Casey wants to give both the hearing and the spasms a full 12 week recovery period before we make any judgements on either.

Click here to see my "MVD Diary

Catherine Elsey

Billings, MT (USA)
Left
2002
Yes
Yes
No





Botox Comments: Worked first time, second time it cause my left cheek and left of mouth to droop.
Arthur Elvidge

Perth (Australia)
Left
2001
Yes
Yes
No





Botox Comments: 90% effective in reducing spasms. Soreness remains. Can't fully close left eye.
Matt Emanuelsen

Rockwood, MI (USA)
Left
2000
Yes
Yes
No





Botox Comments: Updated as of 01/25/10 - Works well for me after a lengthy process for the Dr. to find the correct injection sites and the right dosage. I am very pleased with the results at this point in time and have no plans for an MVD unless my situation changes. My HFS has become continualy worse over the years but I am able to get releif through Botox injections approx. every five months or so.
Donna Eng

Vancouver, British Columbia (Canada)
Left
1994
Yes
No
Yes
2
06/12/01
Dr. Anthony Kaufmann
Winnipeg, Canada
Yes

Botox Comments: Started using April 1997 for 2 1/2 years. Effective in the beginning in subduing the twitches. Progressively needed larger doses and more injection sites. With the larger doses, I experienced difficulties in controlling my face (ie. facial weakness, droopy eye and lips).

MVD Comments - Spasm Free following 2nd MVD (1st MVD 06/22/00 also with Dr Kaufmann).
Judy Ensor

Honaker, VA (USA)
Left
2004
Yes
No
Yes
1
09/09/09
Dr. Michael Horowitz
Pittsburg, PA (USA)
Yes

Botox Comments: Worked for a while but left my face drooping. Looked like I had a stroke. I now have to wait 9 months from my last botox injection before I can have my MVD.

MVD Comments: Update as of 09/19/09 - Woke up from surgery spasm free!! Had slight headaches & nausea first few days. Got appetite back used very little Tylenol for pain. Then, eight days after surgery, started getting really killer headaches nausea and vomiting. I had been taking it easy and hadn't done anythng to cause this. Went to local hospital this morning at 2am had CT scan to check for leaks or bleeding. CT scan clear Doctor found nothing wrong.

Tracy Ervin

Knoxville, TN (USA)
Right
2000
Yes
No
No





Botox Comments: I have been having Botox shots since January 2005. Worked for a while, but now my body is rejecting.

MVD Comments: Update as of 07/17/07 - Cancelled previously scheduled MVD for 08/08/07 with Dr. Peter J. Jannetta, Allegheny General Hospital, Pittsburgh, PA (USA)

Sharon Erwin

Las Cruces, NM (USA)
Right
1996
Yes
No
Yes
1
12/09/02
Dr. David Masel
El Paso, TX
Yes

Botox Comments: Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: For details, click here to see my "MVD Diary".

Nancy Eutsler

Allentown. PA (USA)
Left
2007
Yes
Yes
No





Botox Comments: Twitching stopped but I was very unhappy with the side effects: left eye wouldn't close completely for several weeks and drooping left side of face, and these were with minimal doses. Twitching returned, tried new doctor for Botox. Had shots around eye and cheek, then my entire left side of mouth drooped for two months. Two attempts at Botox, not happy with either result but now the spasms have gotten worse.
Ronald Evans

Bay City, MI (USA)
Left
1994
Yes
No
Yes
1
04/22/02
Dr. Byron G. Thompson
Ann Arbor, MI.
Yes

Botox Comments: Very effective for the first few years-- somewhat less right now.
Jim Evridge

Pennsville, NJ (USA)
Right
1994
Yes
Yes
No





Botox Comments: A few years ago I tried Botox injections. The spasms ceased, but, people wanted to know when I had a stroke. Because of the injections my face appeared to be paralyzed. I vowed then that I would never have the injections again. However, the spasms are now occuring more frequently and I am becoming more and more reclusuve because of them.

Click here to see my "Personal Botox Experiences".

Jamie Ewing

Seattle, WA (USA)
Left
1991
Yes
No
Yes
2
07/09/09
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Somewhat successful now that they have gotten the strength right.

MVD Comments: Update as of 08/25/09 - On 07/09/09 I had my MVD #2 Dr. Jannetta and The surgery was a success and was a much easier recovery than the first MVD 10 years ago. After 20+ years the twitch is now gone and I am spasm free for the first time. I cannot begin to tell you what this group has meant to me. It is because of this group that I was able to take this journey to a life that will exist without spasms. (MVD #1 on 09/16/98 with Dr. Elizabeth Bullitt was not successful).

Sassa Ewing

Stockholm (Sweden)
Left
2007
Yes
Yes
No





Botox Comments:
William Farly

Tampa, FL (USA)
Left
1999
Yes
No
Yes
1
09/16/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Working fairly well, and have little or no spasams 80% of the time.

MVD Comments: Update as of 09/03/07 - It took almost 3 years for my face to calm down to no spasms, I am now "SPASM FREE. Thank Dr. Jannetta and Dr. Casey very much, you are a gift to us. (As of 09/05/06, still trying to recover. I feel dizzy and tired most of the time and still have some spasms. Had a CFS leak complication during my MVD and I believe this may have added to problems and made the healing process much more difficult. I also am suffering vertigo, loss of hearing and cognitive deficits and confusion. I have been to several rehabilitation centers for this and they taught me to cope with these complications to some degree. I’m still seeing neurologists and continue in my therapy).
C Farrell

Surrey, British Columbia (Canada)
Left

Yes
No
No





Botox Comments: No side effects but no change in condition (had 4 treatments).
Karen Faughn
Inactive Memb.
Gilbertsville, KY (USA)
Left
1996
Yes
No
Yes
1
04/03/07
Dr. Peter Konrad
Nashville, TN (USA)
Yes

Botox Comments: Lasts about 3 months - works around eye area... and we know what happens if we get injections on the lower part of the face - we just drool & droop.

MVD Comments:

Diana Fell

Sayre, PA (USA)
Left
1980
Yes
No
Yes
1
08/22/05
Dr. Khalid A. Sethi
Johnson City, NY (USA)
No

Botox Comments: Didn't like it. Paralized the whole side of my face. No control over drooling.

MVD Comments: It took 3 months after my MVD for it to happen, but I am "SPASM FREE"! YIPPPPEEEE!

For details, click here to see my "MVD Diary".

Virginia Felts

Aberdeen, WA (USA)
Right
2001
Yes
No
No





Botox Comments: Does not help much
Shirley Ann Fisk

Midlothian, VA (USA)
Left
1988
Yes
No
Yes
1
02/25/99
Drs. Jannetta & Kassam
Pittsburgh, PA
Yes

Botox Comments: First time I had Botox injections my upper eyelid drooped for about six weeks. I was so distressed, I didn't try Botox again for another two years. Then I started getting Botox injections every 3-6 months for about 5 years. My face drooped to the point where some thought I had had a stroke. As the Botox became less and less effective, I started to think about MVD.

Post MVD Conditions - None
Jennifer Fitter

Mission Viejo, CA (USA)
Right
1996
Yes
No
Yes
1
11/15/06
Dr. Hrayr K. Shahinian
Los Angeles, CA (USA)
Yes

Botox Comments: Helped movement but still felt the sensation of spasms. I stopped Botox 5 months ago because I am looking into MVD.

MVD Comments: Update as of 05/18/08 - 1 1/2 years post-op I am dong so well. I still continue to have ringing on the MVD side but as the audiologist said I would get used to it. In quiet moments such as night time sleep, I need to have some sort of white noise such as a fan or low volume TV. I have adjusted to the hearing loss. Now married almost eighteen years I am so blessed to be where I am. Some people have contacted me from this site and I pray I have been of some help. I know when I was contemplating surgery I contacted some on the list and every one was eager and willing to support and help me. God led me to this site and has used this site to help me and for that, I am so thankful. So far still totally "SPASM FREE".

Cathleen Fitzbach

Quebec (Canada)
Left
1999
Yes
No
No





Botox Comments: No side effects. I'm waiting for results of electromyogram exam I'll have in febuary 2002 for another Botox treatment in larynx and jaws. Comments: Tired Out of pain...!!! Lost more than 15% pound; I'm 84 pounds now. Very weak. Very anxious to have Botox at the right places and expect a real and durable amelioration for stopping morphine. Want to have a more useful life; I'm too young to stay in bed all the time!!!
Bill Fleming

Peachland, British Columbia (Canada)
Left
1985
Yes
No
Yes
1
12/09/02
Dr. Chris Honey
Vancouver, BC (Canada)
Yes

Botox Comments: "frozen face", biting inside of mouth and lip, people thought I had a stroke at times. However it did help the twitch. I just couldn't smile at all. I had botox treatments for about 10 years, every 4 months or so. Last one Nov. 28 2001. Without botox, at least I can smile when the face is not acting up.

MVD Comments: For details, click here to see my "MVD Diary".

Jennie Flood

Clay, NY (USA)
Left
2002
Yes
No
Yes
2
11/11/06
Dr. Charles Hodge
Syracuse, NY (USA)
Yes

Botox Comments: First shot, worked about three months, but did not totally stop spasms. Second shot, dose increased, but did not work at all.

MVD Comments: Update as of 11/24/06: Vertigo, ringing in ears, dizziness, walk is still effected, still only 6 weeks out of surgery, deaf in left ear, dry eyes, head ache, eyesight is blurry at times and cannot focus. First surgery did not work and was a total nightmare! Second surgery a success but I'm still recouperating. No spasms .

Pamela Floyd
Inactive Memb.
Balgowlah, (Australia)
Left
1989
Yes
No
Yes
1
10/23/01
Prof. Michael Besser
Sydney, Australia
Yes

Botox Comments: Very effective-injections every 3 months.

Post MVD Conditions - Update as of 03/21/05 - Absolutely thrilled at this stage to report that I am 95% spasm free after having the op in Oct 01. Went off botox in June 2004. Spasm free after 3 years! Each year gets better!

Kay Ford

Wollongong (Australia)
Left
2002
Yes
Yes
No





Botox Comments: First time it looked like I had a stroke, took a while for the effect to wear off, I insist for the smallest dose now, but it still effects my smile and I hate that.
Ted Fontenot

Many, LA (USA)
Left
1997
Yes
Yes
No





Botox Comments: Visited neurologist who had no clue, had MRI and even did spinal tap. Finally was recommend to see opthamologist who diagnosed my problem immediately and started me on Botox injections. Have Botox injections every three months which keep my left eye from closing, but I’m still experience twitching, especially when trying to sleep. Closing my eyes seems to accelerate twitching.
Dawn Francis
Inactive Memb.
Kaukauna, WI (USA)
Left
2004
Yes
No
Yes
1
10/06/05
Dr. Philip Yazbak
Neenah, WI (USA) Sydney, Australia
No

Botox Comments: Helped for a short time. it seems that the long term side effects for most people have out weighed the benefits.

MVD Comments: Update as of 01/07/06 - I think I am still in the process of healing, I have some hearing (or tone) loss and the twitch remains.

Valerie Frank

Fremont, CA (USA)
Right

Yes
Yes
No





Botox Comments: I have had one session of five injections around the eye which has minimized the spasms on the eye and cheek area.
Mary Jane Fraser

Bellingham, WA (USA)
Left
1999
Yes
Yes
Yes
1
01/22/03
Drs. Kassam & Horowitz
Pittsburgh, PA
Yes

Botox Comments: I have tried botox with increasing ineffectiveness. I have never had a treatment that got me anywhere near normal.
Darlene Frederick

Clinton, MI (USA)
Right
1999
Yes
No
Yes
1
05/08/03
Dr. Peter J. Jannetta
Pittsburgh, Pa (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary".

Judy Frederickson

St. Louis, MO (USA)
Left
1997
Yes
Yes
No





Botox Comments: Botox Comments: For details, click here to see my "Personal Botox Experiences".
Val Freeman

Manly West Qld (Australia)
Right
2000
Yes
Yes
No





Botox Comments: Only one treatment. Has stopped eye twitching, but I can still feel the spasms. Blurred vision at times
Mike Frey

Lititz, PA (USA)
Left
1994
Yes
No
Yes
1
05/20/99
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: I didn't like the effect of the Botox, and as time went on, the spasms got worse, Botox was ineffective at supressing them.

MVD Comments: For details, click here to see my "MVD Diary . 100% hearing loss in left ear, associated tinnitus and balance issues. My active life remains unchanged. Since MVD, I began riding motorcycles after 18 years of non-riding. Recently got private pilot's license after 30 years of waiting.

Bridget Frohreich

Mt. Gilead NC (USA)
Left
1976
Yes
Yes
Yes
2
03/04/86
Dr. Horace Norrell
Sarasota, FL(USA)
No (Was for 11 years)

Botox Comments: For 6 1/2 years had the same neurologist who did a wonderful job of administering it and no problems. She moved out-of-state and the new one did my last Botox injections and got some in the muscles that control the movement of the eye. Also instead of the eye drooping just a tad the lid and area below the brow is now hanging 2/3s down over the eye. I am having double vision with both eyes opened. Went to eye doctor and he explained that the muscles in the injected side are moving slower than my right side thus the double vision. Only cure is to wear eye patch and wait until the Botox wears off.

MVD Comments: Was Spasm Free after MVD #2 for 11 years. MVD #1 in 04/78 with Dr. Ira Hardy, Greenville, NC (USA). I would encourage anyone to try MVD. The surgery has come a long way since I had it way back then.

Susan Fujita

Roanoke, VA (USA)
Left
2004
Yes
No
Yes
1
07/13/09
Dr. W. Jeffrey Elias
Charlottesville, VA (USA)
Yes

Botox Comments: First time resulted in whole left side of my face drooping. Looked like I had a stroke. The next time I couldn't close my left eye.

MVD Comments: Update as of 11/22/09 - Five weeks after my surgery I developed an infection at the wound site. On 09/05/09 I had another surgery to take out the titanium mesh and all foreign material. Currently am spasm free.

Maura Fulton
Inactive Memb.
Bangkok,(Thailand)
Right
1992
Yes
No
Yes
1
07/23/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: I began Botox treatments once in the United States. Result was that I could not close my right eye very easily. Spasms were reduced very slightly. Moved to the former USSR and could not continue treatments.

MVD Comments: For details, click here to see my "MVD Diary.

Pam Fruth

Villa Park, CA (USA)
Left
2000
Yes
Yes
No





Botox Comments: The botox has been very effective. It lasts 3 to 4 months.
Janie Frye

Villa Hills, KY (USA)
Both
1995
Yes
No
Yes
1
05/08/01
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments:

MVD Comments: Further to the MVD, a chiari surgery was performed by Dr. Kassam in April 2004 which was successful; some resulting hearing loss.

Elaine Roedell

Boca Raton, FL (USA)
Right
2004
Yes
No
Yes
1
08/18/08
Dr. Chandranath Sen
New York, NY (USA)
Yes

Botox Comments: Botox Injections, which did paralyze the right side of my face, but when I smiled, I looked as if I were a stroke victim.

MVD Comments: Update as of 10/29/08 - No complications. I have been spasm free since I came out of surgery.

Sally Gallagher

Mays Landing, NJ (USA)
Right
2006
Yes
No
Yes
1
08/15/07
Dr. Amin Kassam
Pittsburgh, PA (USA)
No

Botox Comments: On my 3rd injection, injected via machine which indicates when nerve is hit, seems to be more precise, unfortunately not lasting long, Dr. injects in left side as well to even out, but still leaves me with a "crooked" smile.

MVD Comments: Update as of 04/26/08 - Scheduled for MVD #2 Consultation on 05/15/08 with Dr. Eric Zager, University of Pennsylvania Hospital, Philadelphia, PA (USA). . I experienced a few days of very mild spasms immediately after surgery, then they started up again. Some days they are pretty bad, other days they are barely noticeable. Dr. Kassam said this is normal and can take months to see results. Dr. Kassam was concerned with my outcome due to having Botox at 6 month prior to surgery, but he did find a very large artery looped around the nerve. I have had bad headaches and have returned to Pittsburgh for a follow up with my surgeon on 09/11/07.. Another cruel twist of fate is that I have developed twitches on the opposite side, starting around my cheek/nose a couple months ago, it seems to be getting more intense. I am looking for a new neurologist to find out what is going on with this. (MVD #1 with Dr. Amin Kassam on 08/15/07)

Judy Galland

Cottonport, LA (USA)
Left
1998
Yes
No
Yes
1
01/26/09
Dr. Anil Nanda
Shreveport, LA (USA)
Yes

Botox Comments: Botox - is not being as effective - only lasts for about 1 1/2 months now. I had my last botox on November 18, 2008.

MVD Comments: Update as of 02/14/09 – I am spasm free - both eyes are opening and closing the same with no pulling or twitching of face, I have lost hearing, not a full loss, but I believe it will be a lot. I am walking more and still have a big problem with balance. I’m taking it one day at a time. I just feel so peaceful – it’s a blessing.

Julie Gallucci

Convent Station, NJ (USA)
Left
2006
Yes
No
Yes
1
01/28/09
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox was effective. However, my eyelid would droop horribly.

MVD Comments: For details, click here to see my "MVD Diary".

Sondra Garcia
Inactive Memb.
Erwin, TN (USA)
Right
1988
Yes
No
Yes
1
08/09/00
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: Had Botox injections twice. First time the whole right side of my face was bruised for several weeks. The spasms decreased but returned in about 2 months. Had second Botox treatment. This time no bruising but it only lasted about 3 weeks. Decided it was not worth the time and money. Also had a droopy mouth.

MVD Conditions - Sometimes have an achy feeling in my head at the incision area, but, I feel like a real success story. If I should ever be afflicted again, I would not hesitate to have the surgery. (12/13/03)

Lisa Gardner

Sydney (Australia)
Right
2004
Yes
No
Yes
1
11/02/09
Dr. Jeffrey Brennan
Sydney (Australia)
Yes

Botox Comments: Has been effective in the past but the last time it did not seem to be that effective and still experienced spasms.

MVD Comments: Update as of 11/22/09 - Suffered with HFS for 5 years before my MVD. The surgery went well and I woke up spasm free and remain that way. The surgeon told me that there were three areas of compression along the facial nerve - a blood vessel was actually running along the nerve, there was also a vessel compressing the nerve at the top and finally a group of arteries at the bottom of the nerve. He detailed that all these areas were moved away from the nerve and seperated with Teflon. I have encountered a partial loss of hearing in my right ear, despite the fact that my hearing was monitored during the entire procedure. Where hearing is monitored it allows the surgeon to pause what they are doing to avoid any damage. Towards the end of the surgery a loss of hearing was noticed however at this stage the surgeon was closing up and nothing was happening around the 8th nerve so no action could be taken. The surgeon had mentioned that the hearing may possibly improve in time. My energy levels are starting to return now, my recovery was also complicated by the fact I developed a kidney infection so had fever and a lot of pain. But I have experienced very little pain due to the actual surgery and my incision is healing really well.

Ellen Garinger
Inactive Memb.
El Segundo, CA (USA)
Right
1997
Yes
No
Yes
1
08/01/00
Dr. Takanori Fukushima
Raleigh, NC
Yes


Chuck Garot

Naples, FL (USA)
Right
1993
Yes
Yes
No





Botox Comments: Started Botox A about March 2000. The effects were greatly varied due to me trying different providers. Most were unfamilar with HFS and the treatment of same. Also Botox was just coming on the scene, and then was mainly cosmetic. I jumped around until I found an administrator who I was happy with. I think Botox is at best hit and miss. I am still on Botox but feel the effectiveness lessening and the resistance growing. I may look into Botox B to see if it could be a replacement for the A Toxin.
Sheila Garske

Wausau, WI (USA)
Right
1992
Yes
No
Yes
1
12/27/05
Dr. Michael Link
Rochester, MN (USA)
Yes

Botox Comments: Botox injections started in 1993 - hasn't been too helpful the last few years. Haven't had an injection since Feb 2005....my right eye stays closed for too long of a period now so I need to find a Doctor for injections......mine moved away.
Fiona Gavriel

Wellington (NEW ZEALAND)
Left
2001
Yes
Yes
No





Botox Comments: Botox - seems effective but only had it twice. Have just had a cataract operation which hasn't gone well - not sure if there is a relationship.
Marty Geeves

Hobart (Australia)
Left
2005
Yes
No
Yes
1
05/20/08
Mr. Andrew Hunn
Hobart Tasmania (Australia)
Yes

Botox Comments: Eyelid lag lasting 6 to 8 weeks both times I have used Botox it's embarassing.

MVD Comments: Update as of 08/27/08 – Remain dizzy 13 weeks post-op although slowly improving. My spasms subsided for 10 weeks but now they are back bigger and bolder than before surgery. Damn, can I say that? Spasms and still dizzy from op.... things can only get better.

Jason Geisinger
Inactive Memb.
Cockeysville, MD (USA)
Right
2002
No

Yes
1
12/04/02
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

MVD Comments:
Julie Genovese

Dover, NJ (USA)
Left
1986
Yes
No
Yes
1
01/29/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox helped at first and was a partial relief. I used it for 3 years every 2 months. It did not take away the HFS but it lessened the intensity.

MVD Comments: For details, click here to see my "MVD Diary".

Carol George

Fayetteville, PA (USA)
Right
2005
Yes
Yes
No





Botox Comments: no side effects; reduces eye twitch but not mouth
Edward Gereis

Cairo (Egyp)
Right
1999
Yes
No
No





Botox Comments: Very short period of relief (3 months). Drooping eye lid & weakness of cheek muscle.

MVD Comments: Was scheduled for MVD on 10/14/08 with Prof Hugh Coakham, Glen Bupa Hospital, Bristol, England (United Kingdom), but surgery was cancelled.

Sandra Gerstner

Hillsborough, NC (USA)
Left
2000
Yes
No
Yes
1
08/28/08
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA).
Yes

Botox Comments: Have discontinued Botox. Left facial muscles weakening and only had side effects (drooping face, crooked smile, etc.) Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update as of 09/13/08 - After I got home on 9/2/08, I was pretty well tuckered out. Starting early Saturday morning I was having chills, fever, nausea, pressure and pain around my forehead and base of my skull. About 1:30 PM I called Dr. Sekula, who answered before I even got back to my chair. He called in a steroid and told me to go to the ER if I didn't feel better in 5-6 hours. Within 4 hours my temp was up to 102 and I went to the ER. They did a CT scan, chest x-ray and a spinal puncture. I had pain and soreness down my spine and in my hips by the time we got to the spinal puncture. Although that was the best puncture I have ever had. Not only was it successful, but it relieved the pain and pressure in my head and spine. I had contracted bacterial meningitis post op. I was admitted to Isolation and kept from 9/2 through 9/11 at Duke University. I got home late Thursday night and have to do home IV antibiotics (central line) twice a day. I'm pretty well exhausted (husband also), but I am so thankful I have no spasms, my eye is fully open and I don't look like a stroke victim. I think we caught the meningitis before anything else neurological could be done.

Click here to see my "MVD Diary

Nancy Gevels
Inactive Memb.
Lippelo (Belgium)
Right
1998
Yes
No
Yes
1
04/08/04
Dr. Luc De Waele
Ghent, (Belgium)
Yes

Botox Comments: I had my first Botox in January 2003. I just had the 5th injection. One time I had a droopy eye.

Click here to see my "Personal HFS History".

Ruth Ghuman

Surrey, British Columbia (Canada)
Left
2005
Yes
Yes
No





Botox Comments: Not very successful, still have spasms, face looks lopsided and eye is extremely sensitive to light and tears in cold weather, which also causes spasms.
Marge Gibson

Millsboro, DE (USA)
Left
1980
Yes
No
Yes
1
05/20/96
Drs. Jannetta & Lovely
Pittsburgh, PA
Yes

Botox Comments: was in the original experimental study in the early eighties before approval from the FDA, They worked originaly but as time wore on they became less effective. Had seven shots about every three months in the beginning, later much more frequently.I received them for about twelve years.

MVD Comments - May 2003, seven years post-op and spasm free, thank God, and special thanks to Drs. Jannetta and Lovely. A brief recap: I was on Botox for about eleven years, they became less effective over the years. My spasms were the greater part of my life and I had very little respite from them. I came through the operation with no hearing loss. I did have Bells Palsy for about four weeks and a vocal weakness which was of short duration. To date I have no facial weakness or droopiness after being on Botox for so long.

Joe Giovannelli

Villa Park, IL (USA)
Right
2002
Yes
No
No





Botox Comments: good for a while. Concern on log term effect. Stopped for the past year.
Feben Gizaw

Glen Allen, VA (USA)
Left
2003
Yes
No
Yes
2
08/15/08
Dr. Amin Kassam
UPMC, Pittsburgh, PA (USA)
Yes

Botox Comments: Didn't help much.

MVD Comments: (MVD #1 on 08/13/08, also with Dr. Kassam, was stopped to prevent hearing nerve damage. Surgery was successfully completed on 08/15/08). I strongly recommend Dr. Amin Kassam and UPMC.

Mary Ann Glasco

Inverness, FL (USA)
Right
1998
Yes
No
Yes
1
10/12/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: 1st time was great - 2nd not as good - 3rd no relief at all.

MVD Comments: Update as of 06/28/08 – I have finally become “SPASM FREE”. It has been over 20 months since the surgery, but I have been spasm free for a couple weeks. I would get a spasm maybe every couple of days, but would only last for about 5 seconds. But for the last couple weeks, NONE. Everything I went through was worth the feeling I have now. Everyone is so happy for me & can't believe the difference in my face. People actually thought I had a stroke because of the way I looked. No more.! I just hope & pray that this will continue. If not, I would not hesitate to have it done again. It is worth it to me.

Rosie Goddard

Winchester (United Kingdom)
Right
2005
Yes
No
No





Botox Comments: Not at all effective. Botox gave me double vision which resulted in my loosing my job because of days off sick.
Omeshia Golatt

Miami, FL (USA)
Left
2000
Yes
No
No





Botox Comments: My first injections worked great once it kicked in, but didn't last the estimated 3 months. The last time I tried it in, October 2006, it didn't work. I was thinking of maybe trying a different doctor.
Lynne Gong

Sacramento, CA (USA)
Right
1991
Yes
Yes
Yes
2
06/09/09
Dr. Allen Efron
Redwood City, CA (USA)
No

Botox Comments: Botox works for me, but also causes weakness in my face.

MVD Comments: Update as of 07/24/09 - My doctor said my surgery was a difficult one. He spent a great deal of time to get the sponge out (the one from my first MVD which glued the artery and the facial nerve together now). He only did 90% clean up because my artery was bleeding. I lost my right side hearing after the surgery. My spasms are 80% less than before. My recovery was long and hard. I am ready to go back to work after 7 weeks recovery. (MVD #1 in 1995 with Dr. Zuo).

Martha Gongle

St. Clair Shores, MI (USA)
Right

Yes
No
Yes
2
10/09/08
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

Botox Comments: Effective at first, increased dosage caused eye irritation, sinuitus, bronchitis and pain in ear. Little effect, spasms are worse now.

MVD Comments: Update as of 11/04/08 - I awoke with no spasms, no hearing loss and have suffered only the usual headaches and dizziness. I had a visual distortion with seeing things sideways right after surgery and it went away in a couple of days. Many thanks to all for giving me the courage to try again. It's wonderful to finally have control over my face. (MVD #1 on 02/08/06 with Dr. Daniel P. Elskens)

Fred Goodhue
Inactive Memb.
Spokane, WA (USA)
Left
1982
Yes
No
Yes
1
02/12/03
Dr. Robert Rostomily
Seattle, WA (USA)
Yes

Botox Comments: Inexact science, two different Drs., sometimes good result, sometimes drooping face & eye lid. Botox decreasing in effect with resulting long-term drooping of cheek.

MVD Comments: Update: 02/21/04 - It took six months for my spasm to totally subside and I have been spasm free for six months.

Lyndall Goodwin

Sydney (Australia)
Left
2009
Yes
Yes
No





Botox Comments: As of 01/20/10 - I had Botox in December 2009, worked great for three days, since then I have had various levels of spasms and droop & numbness on the whole left side of my face, including my neck at times. I have had one week that has been relatively 'normal'. The rest the spasms and numbness varies from mild to a twisted face. I am still deciding if I should continue with Botox for a second round and see if I have better results.
Deborah Gordon

Houston, TX (USA)
Left
2006
Yes
No
No





Botox Comments: Had 1 treatment of Botox. Not effective, but was given a low dosage. I will be trying it again
Rosalyn Grace

Hoover, AL (USA)
Right
2000
Yes
No
Yes
1
07/25/07
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
No

Botox Comments: Initially, the Botox seemed to work every other time. On occasion, it stopped the twitching altogether, but caused a droop in my face. After finding a doctor who specialized in movement disorders, she perfected the treatment and the Botox was very effective.

MVD Comments:

Karen Graham

Calgary, Alberta (Canada)
Right
1994
Yes
Yes
No





Botox Comments: Have had 3 injections of Botox, and experience significant relief - at least my eye doesn't close when I try to smile. Doubled the dose last time, which worked better. Does not provide a total relief, but certainly helps.
Laura Grant

Alexandria, VA (USA)
Left
2000
Yes
No
No





Botox Comments: I have a strong immune system so it didnt last more than 1 month.
Eric Green
Inactive Memb.
Copenhagen (Denmark)
Left
2002
Yes
No
Yes
1
11/25/03
Dr. Vagn Eskesen
Copenhagen, (Denmark)
Yes

Botox Comments: Felt inconvenient due to dry eye and kind of dead glance in eye.

MVD Comments: As of 12/04/03, Lost hearing in left ear, also have a slight paralysis on the left side of the face, can't close the left eye without closing both, and I can't show my teeth on the left side either. But the progress is good and probably these small problems will disappear as time goes.

Rosemary Green

North Canton, OH (USA)
Both
2001
Yes
No
No





Botox Comments:
Olympia Gregory

Richmond, CA (USA)
Left
2004
Yes
No
Yes
1
12/07/07
Dr. Nickolas Barbaro
San Francisco, CA (USA) Pittsburgh, PA (USA)
No

Botox Comments: Botox treatments allowed me to continue working, but did disfigure my face. I had a wide open eye and an a-symmetrical smile. I couldn't lift the corner of the mouth on the side where I had had the injections.

MVD Comments: Update as of 12/09/08 – Was spasm free for 4 months following MVD before the spasms returned, although they are much less severe then prior to MVD. I use Lyrica, the side effects appear very minor...thought I don't know about long term use. I often go through full days without ever worrying about my HFS! I do wear slightly tinted glasses almost always when I am at work. However, I have felt so much less stress regarding my condition since I have had the MVD.

Jan Griese

Hamilton, Ontario (Canada)
Left
1989
Yes
No
Yes
1
02/06/07
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: I have had 26 botox injections. Becoming less effective and lasting for shorter periods.

MVD Comments: For details, click here to see my "MVD Diary.

Selina Griffin

Macon, GA (USA)
Right
2002
Yes
No
No





Botox Comments: 1st injection Nov 2008. Worked great the 1st time, then diminishing results each time after, with lip drooping after 3rd injection.

MVD Comments - Scheduled for MVD on 02/24/10 with Dr. Peter J. Jannetta, Allegheny General Hospital, Pittsburgh, PA (USA).

Barbara Grimm

Hamilton, Ontario (Canada)
Left
2002
Yes
Yes
No





Botox Comments: Receive Botox about every 16 to 21 weeks. Controls blepharospasm to a point.
James Guercio

Buffalo, NY (USA)
Right
1996
Yes
No
Yes
2
04/20/02
Dr. Kevin J. Gibbons
Buffalo, NY (USA)
No

Botox Comments: Botox injections very effective but uncomfortable.

MVD Comments: After the first MVD, on 04/17/02, Dr Gibbons said he noticed the twitching had moved lower on my face and that if it didn't improve he would have to go back in. After the first surgery I wasn't to bad, a little balance problem and tired. After the second surgery, on 04/20/02, I was out for the count. I couldn't even stand up without holding on to something. I was in the hospital for about 14 days and in rehabilitation for another 10 days. As of 12/14/03, unfortunately I am not spasm free and I did lose 82% of the hearing in my right ear because of the MVD. The fact that my Doctor did not use intra-operative monitoring during my surgery most likely had a roll in my hearing loss.

Margaret Guerra

Dallas, TX (USA)
Right
1999
Yes
No
Yes
1
12/13/07
Dr. Jonathan White
Dallas, TX (USA)
Yes

Botox Comments: Injections for the right eye worked for just a while. About 2 weeks after the first injections around the eyes. second dose effective for about 1 month now bottom of eye sags a bit more than the other.

MVD Comments: Update as of 12/24/07 – I ending up in the hospital for a total of 6days instead of 3 as expected. I am currently suffering with right-sided paralysis. Had to do lots of physical and occupational therapy before going home due to the vertigo. My hearing is still there "wooohooo''. I was told by my surgeon that once he was in the head, he saw that the blood vessel was "extremely" huge and he wondered how I had managed for so long with the HFS. I also had to have a weight put under my right eyelid as my eye is unable to close, blink or even cry. They had me on a lot of "eye" drops for excessive dryness and lubrication but my cornea ended up scratched anyway. NO MORE TWITCHING, PULLING AND STUTTERING. I am happy and "grateful", I am on the road to recovery and the surgery was very well worth it. The nerve needs to heal and it will. I’m fine and extremely grateful. Despite my outcome I would honestly say to not have the "spasms", I would probably do it again".

Amelia Gutierrez

East Palo Alto, CA (USA)
Left
2000
Yes
Yes
Yes
1
06/26/07
Dr. Allen Efron
Redwood City, CA (USA)
Yes

Botox Comments: I guess it helps, I get it every three months but never feel like the twitching ever stops. The second month is always the best. The side effects are that my face is deformed I can't smile because only one side of my face smiles and when I drive I can't really look over my left shoulder because my eye closes up. I hate needles and am very stressed when it is time for my Botox injections.

MVD Comments: Update as of 06/26/08 - I can't beleive it has been one year and I'm still spasm free. I am still recovering from the facial weakness but I can say that I am almost 100% recovered from the facial pralysis.

Ernesto Gutierrez

Mexico City (Mexico)
Left
1999
Yes
No
Yes
1
04/04/063
Dr. Rogelio Revuelta
Mexico City (Mexico)
Yes

Botox Comments: It worked very well, the first 2 years (about six to eight months), then it goes down.

MVD Comments as of 04/15/06: Everythink is going very well with no pain, just some (vertigo, or nausea), that is dissapearing and some auditory problems.

Martin Gutierrez

Crandall, TX (USA)
Left
1999
Yes
No
Yes
1
06/02/03
Dr. Thomas Kopitnik
Dallas, TX (USA)
No

Botox Comments: Botox helps a little.

After going home I got an infection on the wound and had to go back for another three days. They had to reopen the wound and clean it out. The spasms are still with me, but not as severe. The doctor said it might take several months for the spasms to disappear. Also when I woke up from the M.V.D. my voice was weak. So on 08/19/03 I was sent to another doctor (head & neck Oncology) he stuck a camera up my nose and down my throat. What was found was my vocal cord (surgery side) was paralyzed.

Tashi Gyaltsen

London (United Kingdom)
Left
2006
Yes
No
Yes
1
02/03/09
Mr. Neil David Kitchen
London, England (United Kingdom)
No

Botox Comments: Botox injection OK but wears off in 2 months - never truly stopped the spasm even within 2 weeks of injection.

MVD Comments: Update as of 02/04/09 - Had MVD done yesterday. Spasm still occurring. Very concerned. Researched and found that it's very common to have spasm after the operation. Milestone to look for slow disappearance of Spasm:- 1 wk (still spasm but little less), 6 wks(almost 80% gone), 3 months (over 95% gone and 6 months (should be completely free of spasm).

Tayeb Habib

Ramada - Odivelas (Portugal)
Left
2000
Yes
No
Yes
1
07/03/02
Dr. Cunha e Sa
Lisbon, Portugal
Yes

Botox Comments: left face gradually paralyzed.

MVD Comments: No more spasms since I had MVD by Dr Cunha e Sa from Portugal.

Paula Hadley

Barryton, MI (USA)
Left
1978
Yes
No
Yes
1
08/12/02
Dr. Oren Sagher
Ann Arbor, Michigan (USA)
Yes

Botox Comments: Worked well for a while, then injections became more frequent and more of them to get same effect.

MVD Comments: As of 12/14/03, some balance probelms, not severe, but enough to bother some of my activities. And my head is numb as a result of the incision and stitches. This is approx. 16 months following surgery. My sense of smell is a not accurate.

Roy Hall

Gore, OK (USA)
Right
2001
Yes
No
No





Botox Comments: relief for about 3 months
Steve Hammersmith
Inactive Memb.
Dallas, TX (USA)
Right
2005
Yes
No
Yes
1
08/22/07
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Became less effective and required more frequent treatments.

MVD Comments: Update as of 09/25/07 - some loss of hearing on affected side, vertigo with nausea, tinnitus in right ear, "plugged up" ear, mild headaches.

Alex Handyside

Halifax, Nova Scotia (Canada)
Right
1990
Yes
No
Yes
1
03/08/04
Dr. Robert Brownstone
Halifax, Nova Scotia (Canada)
Yes

Botox Comments: Found out about Botox in 199, but couldn't get a Doctor to refer me until 1996. Initially lasted 4.5 months, but within two years it was only lasting two months. Gave up Botox in 2003 when it lasted just two weeks. Surgery became the only option.
Shabeeba Hannan
Inactive Memb.
Barrow-in-Furness (United Kingdom)
Right
2004
Yes
No
Yes
1
02/03/04
Prof Hugh Coakham
Bristol, England (United Kingdom)
Yes

Botox Comments: Very effective initially. Mild facial palsy, wore off in 3 months.

Click here to see my "Personal HFS History".

MVD Comments: Mild hearing loss, no other complications. I think MVD is the best thing that has happened to me! I am completely spasm free and back to leading a normal life after 10 agonizing years. Thank you Prof Coakham.
Erica Hansen

La Crosse, WI (USA)
Left
2004
Yes
No
Yes
1
09/03/09
Dr. Jerry Davis
La Crosse, WI (USA)
Yes

Botox Comments: Very painful during injection. It did not work and left me with a slight droop of my eyelid and mouth.

MVD Comments: Update as of 09/20/09 - I've been dreaming of being able to make this post! I am spasm free!! It feels wonderful! I do have some side effects from the surgery but my doctor is very confidant that they will all resolve in time. I have dizzieness and I'm still pretty wobley on my feet and can't spin around too quickly or I get that sick feeling. Also, have some hearing loss.

Sylvia Harmon

San Antonio, TX (USA)
Left
1999
Yes
No
Yes
1
03/10/03
Dr. Rob Parrish
Houston, TX (USA)
Yes

Botox Comments: Update as of 04/23/08 - Eye would not close, mouth drooped. I saw a Dr. Davis in New Braunfels, TX and had Botox again a few months after my MVD. He did an excellent job and after a few weeks the spasms stopped. It was five years in March since my MVD and I have been spasm free since the last botox injection a few months later. I have had breast cancer surgery, two cataract surgeries and a hand operation last year, but have recovered from all of them. I just had my 72nd birthday last Sunday and went dancing to celebrate. Life is good and I owe much of it to HFSA for all the support I received in 2003.

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary".

Kay Harper

Camberley, (United Kingdom)
Right

Yes
No
Yes
1
07/27/04
Prof. Hugh Coakham
Bristol (England)
No

MVD Comments: Update as of 07/27/08 – After being spasm free for 3 years following my MVD, the spasms returned in 2007. I am taking meds at moment and they help a little. Not ready to make the decision for 2nd as yet.
Sara Hartman

Jefferson City, MO (USA)
Left
2002
Yes
No
Yes
1
06/02/08
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update as of 06/06/08 - Phil and I went to see Dr. Casey early this morning for my post-op appointment. Though I am still quite weak and tired, I am amazed at the improvement since Monday when I woke up from surgery and spent the next 24 hours dry-heaving. Now if I can stop sleeping during the day to be able to sleep during the night I will be doing much better. Although it sounds like I am hearing with both ears, it was evident today that my hearing is currently significantly less on the left side. At six weeks I will have an audiogram to assess how everything is working, but even if things continue as they are now, it seems livable. Dr. Casey sees some small signs of improvement to my face, but says he just has a bad feeling about the nerve. It may be that I will recover fully, but if not, there is a nerve grafting procedure called facial reanimation that can be done, either back here with Dr. Casey or at the University of Missouri closer to home. So there is much room for hope. The good news is that the spasms have stopped. Keep praying for improvement, please, that the palsy is facial nerve weakness rather than damage.

For details, click here to see my "MVD Diary".

Jane Haverkorn

Savage, MN (USA)
Left
1995
Yes
Yes
No





Botox Comments: Way better than spasms. But injections hurt and sometimes get too much and results are droop.
Donovan Head
Inactive Memb.
Ogden, UT (USA)
Left
1998
Yes
No
Yes
1
06/02/04
Dr. Mark V. Reichman
Salt Lake City, UT (USA)
Yes

Botox Comments: Tried twice, no result and extremely painfull.

MVD Comments as of 06/18/04: 7th and 8th cranial nerves were overlapped and required separation resulting in a 65% hearing loss on left side. I am already deaf on right side due to mastoidectomy in 1973. Hearing aids are now required. Headaches, nausea and dizziness. I am worried that I will lose my job due to hearing loss. Trouble sleeping at night.
Deb Hegler

Forest Lake, MN (USA)
Left
2006
Yes
No
Yes
1
02/12/07
Dr. Stephen J. Haines
Minneapolis, MN (USA)
Yes

Botox Comments: Controls about 90% of the twitching, but now when I smile - the left side of my face is immobile.

MVD Comments: Update as of 02/28/07 - I had a very successful MVD surgery. I am spasm free and Dr. Stephen Haines from the U of Minnesota Hospital is excellent, as well as the whole team working with him and at the U of M. I am still suffering some bad headaches, but other than that, doing Great!!!



Brookings, SD (USA)
Left
1995
Yes
Yes
No





Botox Comments: Very effective, arrests the spasm, gives me a break. It does appear as if I've had a stroke, people do ask if I have. But I'll gladly trade it to stop the spasm.
Ruth Hemphill

Ozark, MO (USA)
Right
1999
Yes
No
Yes
1
06/02/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Botox isn't always effective and closes my eye for several weeks after injections. Droopy eyelids a problem. Numerous times the Botox appeared not to work - perhaps the dose was too low. Some injections were successful and others were not.

MVD Comments:
Ray Henderson

La Mesa, CA (USA)
Right
1992
Yes
Yes
No





Botox Comments: Botox is reasonably effective over varying periods of time ranging from approximately 4 to 9 months. Some mild to moderate eye irritation of varying intensity/duration.
Joanna Henning

Golden Valley, MN (USA)
Left
2005
Yes
No
Yes
1
12/13/06
Dr. Amin Kassam
Pittsburgh, PA (USA).
No

Botox Comments: I have stopped using Botox, and am waiting a few months before trying MVD.

MVD Comments:

Deborah Herdlicka

Cedar Rapids, IA (USA)
Left
2001
Yes
No
Yes
1
09/17/09
Dr. Bruce Gantz
Iowa City, IA (USA)
No

Botox Comments: Botox helped with spasms, but it froze my face,face drooped,and I couldn't smile or even open my mouth on left side.

MVD Comments: Spasms continue with same regularity if not worse.

Stuart Hicken
Inactive Memb.
Basingstoke (United Kingdom)
Left
2000
Yes
Yes
Yes
2
06/01/07
Mr. Owen Sparrow
Southampton, England (United Kingdom)
Yes

Botox Comments: Been having Botox for 7 years. Has some help but causes its own problems with drooping eye lids, lack of control in corner of mouth, recurring eye infections as the eye doesn't close properly.

MVD Comments: Update as of 12/14/07 - First MVD had no effect, MR scan revealed another section that appeared to be compressing nerve so underwent further surgery on different part of nerve. After MVD #2, it took until October 2007 until I became spasm free and life is wonderful!! It took a while to fade away but I'm now confident that the spasms have stopped.

Leatrice Hicks

Wilmington, NC (USA)
Right
1996
Yes
No
No





Botox Comments: The first time I had botox injections was in 1998. After about 2-3 weeks, I could see an improvement in the spasms. The effects of the botox lasted about 5-6 months. In 1999, I got botox injections on two (2) ocassions. In 2000, I had botox injections on two ocassions. The last time I received botox was in 2001. By this time, the botox was not controlling the spasms like it did when I first got them in 1998. I decided not to get anymore injections because they were no longer effective and because I just couldn't stand to get the needles in my face any longer. I had a bad reaction to botox only once. That was one time in 1999. Immediately after the injections, I experienced light headiness. The right nostril stopped up. I had very rapid eye movement. The right ear, temple, and eye socket hurt.
Jim Hiddle

Altus, OK (USA)
Right
2004
Yes
No
No





Botox Comments: Effective for about one month after injection. Has caused right side of face to tighten and appears different from left side now. Insurance only covered treatments every six months. Last treatment caused bruising around the right eye.
Kelsey Hildal

Cincinnati, OH (USA)
Left
2000
Yes
No
Yes
1
03/21/02
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: first Botox treatment administered June 2001; too much at the mouth which created a look and feel of paralysis; good result on the eye area; scheduled for next treatment 10/6/01.

Post MVD Comments - The first few days in the hospital are pretty bad I have to admit. But every second you are starting to feel better. I feel it was totally worth it. Now I am back doing the things I normally have been doing.

Click here to see my "Personal HFS History".

Sue Hill

Blue Ridge, TX (USA)
Right
1977
Yes
No
Yes
1
08/31/07
Dr. Richard H. Jackson
Dallas, TX (USA)
No

Botox Comments: I hate Botox. After injections, I sometimes could not see for up to 6 weeks, vision blurred. Also my face would look like I had a stroke. This would last up to 3 months.

MVD Comments: Update as of 09/09/07 – Not yet spasm free, but it seems to be getting better. Dr. Jackson found 2 very large vessels, one on my facial nerve and one on my hearing nerve. After 30 years of HFS, of course some damage. He says he hopes it will heal and I become spasm free. Seems my hearing nerve was worse than my facial nerve, probably why I have Tinnitus. Still a little loopy, but regaining strength every day.

Julie Hillocks

Toowoomba (Australia)
Left
1997
Yes
Yes
No





Botox Comments: Generally has worked very well for me - it has been a godsend really! Sometimes it does not seem to work as well as others (I have it every three months) but usually it works very well.
Paula Hiltz

Halifax, Nova Scotia (Canada)
Right
2003
Yes
No
Yes
1
11/15/06
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Botox treatments - approximately three then my mouth started to droop. Stopped treatments. Felt I could live with the twitch. Symptoms eventually went away. I thought I was cured. The spasm are now back and indeed they are spasms. Very noticable when active. I'm scheduled for more Botox treatments

MVD Comments: For details, click here to see my "MVD Diary.

William Hitchcock

Boyertown, PA (USA)
Right
2000
Yes
No
Yes
1
07/23/07
Dr. Eric Zager
Philadelphia, PA (USA)
Yes

Botox Comments: After third injection, I experienced eye drooping and decided to stop injections.

MVD Comments:
Brenda Hix

Mission Viejo, CA (USA)
Right
2001
Yes
No
Yes
1
02/16/04
Dr. Hrayr K. Shahinian
Los Angeles, CA (USA)
Yes

Click here to see my "Personal HFS History".

MVD Comments: (As of 02/22/04) Dr. Shahinian said I was in the 2% of the worst cases he had ever seen. I had 2 vessels wrapped around the 5th and 8th nerve, so I lost 80% of my hearing, causing my balance to be off, and I have to use a walker for a few weeks, he said until the swelling goes down Also I have double vision, difficult to see, cannot taste, the right side of my face is drooping and I have no feeling on that side yet so it's difficult to eat or drink.

Stephen Hoag
Inactive Memb.
Muskegon, MI (USA)
Right
1995
Yes
No
Yes
1
08/01/97
Dr. Ghaus Malik
Detroit, MI (USA)
No

Botox Comments: I would not recomend botox although it has helped some according to my DRs. it was not effective on me I did not like the droopyness on the right side.

MVD Comments: I have some pain even now at entry site Pain follows the scar very sharp pain prelude to a spasm other than that I'm fine. I suggest any one thinking about mvd to go ahead I fell in about the 7% that failed but others have had great outcomes. If I had it to do over not knowing what I know now I still go for it.
Alison Hoang

Guelph, Ontario (Canada)
Left
2003
Yes
No
Yes
2
09/15/09
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
No

Botox Comments: Good at the first couple of years, but look puffy after injection.

MVD Comments: (MVD #1 on 11/03/08 with Dr. Michael Tymianski).

Dana Hoffman

Marble, MN (USA)
Right
1988
Yes
No
No





Botox Comments - Botox did wonderful on "all" my illnesses (because they are related), for 4 months and then needed to have more injections that I could not afford. When I moved it was hard to find a doctor who would do it.
Joe Holdredge

North Canton, OH (USA)
Left
2000
Yes
No
No






Thom Holland
Inactive Memb.
San Diego, CA (USA)
Right
1992
Yes
No
Yes
1
05/15/01
Dr. Thomas Waltz
La Jolla, CA (USA)
No

Botox Comments: Injections were slightly painful & helped stop the twitches but were only temporary.

MVD Comments: My problem was different than most. I did not have a vein leaning against a nerve, but an artery piercing a nerve bundle. Because of the nature of the of my problem, the surgery caused me to loose hearing in the MVD ear and for two weeks, almost total loss of balance.
Nancy Holsberger

Niskayuna, NY (USA)
Right
1996
Yes
No
Yes
1
04/07/08
Dr. Thomas Lovely
Albany, NY (USA)
Yes

Botox Comments: I first recieved my Botox injection from my eye doctor however, he was never consistent and sometimes my eye drooped or my smile disappeared until the results wore off. Now I am receiving treatments from a rehabilitative Medicine specialist that uses a machine to determine where the spasms are occuring prior to the injections. However, even this can have unpredictable results at times.

MVD Comments: Update as of 04/15/08 - Everything went well and I was totally spasm free from the minute I woke up. I have a million bruises but no real pain except at the incision site. I'm struggling to stay inactive but know it will be best to do that! I can't thank Dr. Lovely enough, nor the ICU staff at the hospital - they were all terrific.

Lin Hooper

Madison, TN (USA)
Right
1997
Yes
No
No





Botox Comments - I had botox 4 times a year. we had to increase the dose as we went along. At times it would help 90% sometimes 60%. The shots would make me slightly nauseus and sleepy and light headed. Whether it was the botox or the spasms, My smile was effected. when I smiled only one side of my mouth would raise into a smile.
Ruth Hoschar

Beaver Falls, PA (USA)
Right

Yes
Yes
No





Botox Comments:
Gloria Hudson

Murrysville, PA (USA)
Left
2000
Yes
No
Yes
1
06/23/05
Dr. Kenneth F. Casey
Pittsburgh, PA (USA)
No

Botox Comments: Worked temporarily for 2 years then froze my face into a pull.
Karen Huffman

Cabin Creek, WV (USA)
Left
1987
Yes
No
Yes
2
11/06/06
Dr. Takanori Fukushima
Raleigh, NC (USA)
No

Botox Comments: Worked for 3 years then not effective.

MVD Comments: Update as of 04/18/07 - I had the 7th and 8th nerves entangled in a vessel at a lower portion of the brain. I was taken back to the hospital on 11/09/06 and had the surgery site reopened and cleaned out due to an infection. I awoke with a palsy effect on the entire side of my face. I am still in the frozen state, although I believe it is getting better. Three months after the surgery I had a stitch placed in the outer eye lids to help in the closing of the eye. I still have trouble chewing and have to drink from a straw. I am happier with the palsy than I was with the spasms, at least now I have constant vision. I laugh saying, my face moved all the time so I had brain surgery and my face doesn't move at all now. (MVD #1 also on 04/18/06 also with Dr. Fukushima).

Greg Hugh

Kirkland, WA (USA)
Left
1998
Yes
No
Yes
3
02/11/08
Drs. Peter J. Jannetta and Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: It is increasingly ineffective.

MVD Comments: (MVD #2 with Drs. Peter J. Jannetta and Ray Sekula on 02/06/08, MVD # 1 with Dr. Laligam N. Sekhar on 05/22/07).

Shannon Hunsecker

Shippensburg, PA (USA)
Right
2005
Yes
No
No





Botox Comments - I received 3-4 injections and the first one worked for quite a few months and I had no spasms but the rest had no effect on my spasms.
Karen Hunt

Hull, England (United Kingdom)
Left
1996
Yes
Yes
Yes
1
04/15/04
Mr. Kevin Morris
East Yorkshire, (England)
No

Botox Comments: Very little effect, no side effect.

MVD Comments:

Jane Hurst
Inactive Memb.
Meridian, MS (USA)
Right
1991
Yes
No
Yes
1
10/29/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Took Botox injections for years, even back to experimental days. The lst few years have lost effectiveness.
Cathy Husler

Mifflintown, PA (USA)
Right
2002
Yes
No
Yes
1
10/24/02
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
Yes

Botox Comments: One series of injection, only lasted 4 days then the spasms came back with a vengence.

MVD Comments: The morning after my surgery, I am told that I had what they believed was a blood clot. My husband was told that in order to save my life, I had to have emergency surgery to relieve the intra-cranial pressure that developed during the night. At around 8:00 am he was compelled to sign permission to do so. I spent the next 19 days in the 4F ICU at UPMC. While there I suffered a blood clot to each lung, nearly dying again. Then was moved to a step down unit on the 12th floor. I was there 2 days, then moved to the 8th floor, where I spent 8 days. It was at that point they believed me well enough to be transferred to Squirrel Hill Rehabilitation. I was only there 3 days and did nothing but throw up and developed a nasal bleed. I was sent back to UPMC Montifiore for an additional 14 days. An Internal Medicine doctor worked with me at this hospital. In all I spent 43 days in the hospital system. During this time I was not able or allowed to eat anything by mouth, because of a swallowing problem. Then 18 days at Nittany Valley Rehab. I still have quite a bit of trouble with balance and appetite, losing over 50 pound because of a long bout with nausea. I 'ver been told many times that I should feel better in a year, but that year seem to get further and further away. I just want to feel good again. This has been so difficult for me and my entire family. I just want to feel good again.

Pam Hutchason

Largo, FL (USA)
Left
1991
Yes
Yes
Yes
1
03/14/07
Dr. Harry R. Van Loveren
Tampa, FL (USA)
No

Botox Comments: Botox does help.

MVD Comments: Surgery did not help and deciding on 2nd surgery.

Merlisa Ibasco (Rico)

Quezon City (Philippines)
Left
2004
Yes
Yes
No





Botox Comments: Visited the doctor and prescribed Botox injections Scheduled for Botox injections on 08/03/07.
Rennette Isaac

Jacksonville, FL (USA)
Left
1998
Yes
No
Yes
1
11/18/03
Dr. Albert Rhoton, Jr.
Gainesville, FL (USA)
No

Botox Comments: Botox stops the twitching but the side effects made my eye stayed closed for the whole 3 to 4 months also my mouth would drool. My last injection was November, 2002. I have an appointment to see the doctor on August 15, 2003 and he will probably want to do the Botox again but I don't want it. MVD Comments:
Mary Ison

Cabot, AR (USA)
Right
2000
Yes
No
Yes
1
06/05/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Did not work

MVD Comments: .

Paul Ivey

Cumming, GA (USA)
Left
1998
Yes
No
No





Botox Comments - Botox was effective. My employer's new health insurance company will not pay for Botox.
Carole Jackson

Essex (United Kingdom)
Left

Yes
No
Yes
1
03/13/08
Prof. Hugh Coakham
Bristol, England (United Kingdom)
No

Botox Comments: One small dose of Botox, helped 95% for three months and symtoms restarted. Doctor said he would increase the next dose if not sufficient. no side effects. I am apprhensive (but not objectionabe) to the use of Botox.

MVD Comments: Update as of 04/03/08 – I’m 23 days post op and improving all the time. Having woken each morning with a headache for the first 7/10 days, these are now subsiding and intermittent and I’m optimistic they will fully subside. I have taken 2 x 500 mg Parecetamol at night to ease pain. Once up in the morning the headache goes away. I would add that my head on the left op side is sore to the touch (no swelling), but I suppose this is only to be expected. My scar has faded and hardly noticeable. I have not experienced any nausea. To date I class my MVD as successful with only an occasional flutter around the eye, with no more eye droop or pulling in the face. There is a slight loss of sensitivity on that side of the face, but I am sure this to will subside with time. Very important I have rested and taken things very easy. Professor Coakham, was a complete gentleman with a caring and excellent bedside manner. He gave me complete confidence and looked in on me every day whilst in hospital being 5 nights to inquire how I was feeling and to make sure I was comfortable. He moved and padded the seventh cranial nerve incorporating lateral spread response.

Oleta Jackson

Durant, OK (USA)
Right
1996
Yes
No
Yes
2
07/18/06
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: (MVD #1 with Dr. Robert Grossman on 06/10/04)

Sherry Jackson

Winder, GA (USA)
Right
1989
Yes
No
Yes
1
08/24/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Using Botox about 5 yrs. not as effective as it used to be-don't like the stroke look but my neuro works well with me to tweak it every 3 months.

MVD Comments: Update as of 08/27/07 - Oh, what a great “SPASM FREE” year it has been! I had forgotten what it felt like to smile with both sides of my mouth. I do still find myself forgetting that I don't have to sit with my back to the crowd in a restaurant and I don't have to run from meeting someone face to face. I have no lasting affects from my surgery. I made my decision to have surgery after reading everything and I mean everything on this website as well as the DVD’s. I went into brain surgery with a peace that I had done all I could do and then just put it all in God's hands. I hope those still searching will find encouragement here for whatever course of treatment you decide. It's truly a miracle to me!!!!

Sue Jackson

Cranswick, East Yorkshire, England (United Kingdom)
Left
1991
Yes
No
Yes
2
11/27/07
Prof Hugh Coakham
Bristol, England (United Kingdom)
Yes

Botox Comments: No effect whatsoever.

MVD Comments: Update as of 11/29/09 - I had my first MVD in May 2005 with a NHS surgeon at my local hospital in Hull, Yorkshire which was completely unsuccessful. In November 2007, I had my MVD #2 with Prof. Coakham. I was not spasm free immediately but over the last 22 months the spasms have gradually decreased and I only have mild ones for a few seconds once or twice a week now. After nearly 15 years of having spasms - the last two months have been a joy and hard to believe - I very occasionally get a slight muscle pulling in my face but NO SPASMS. Its been a very long haul and I still can't quite believe they have gone for good. (MVD #1 with Mr. Kevin Morris on 05/16/05).

Louise James

Gatineau, Quebec (Canada)
Left
2006
Yes
No
Yes
1
11/24/09
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Unfortunately takes a couple of weeks to kick in and doesn't last very long. Doctor won't give injection more than 1x per 3 mos. MVD Comments: Update as of 12/30/09 - All went well with surgery. Dr. Kaufmann thought there were only two offending vessels, but he found a third one lying underneath the really large one. I woke up with my hearing intact and spasm free, however, he did warn me that the spasms might come back.
Andy Jamison

Los Angeles, CA (USA)
Left
2001
Yes
No
Yes
1
03/23/05
Dr. Kim Burchiel
Portland, OR (USA)
Yes

Botox Comments: The neurologist put way too much in. At first I was constantly biting the inside of my mouth. Drooling. Couldn't smile. The spasms did decrease noticebly for about 4 months, however, I honestly didnt know what was worse, the spasms, or the drool!

MVD Comments: For details, click here to see my "MVD Diary".

Kent Janes

San Antonio, TX (USA)
Left
2003
Yes

No




Botox Comments: Worked well for almost 9 months, but first three month left eye drooping and corner of mouth drooping when smiling. Most noticeable when smiling.
Dick Jarvis

Haverhill, MA (USA)
Right
1996
Yes
No
Yes
2
07/31/08
Drs. Peter J. Jannetta and Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: No longer effective, considering surgery.

MVD Comments: Update as of 08/01/08 - Had MVD #2 yesterday at AGH in Pittsburgh and my recovery has been a lot easier than MVD #1. As before, I woke up "SPASM FREE" in the recovery room with no other adverse affects from the procedure! I am so greatful to the HFSA and especially Drs. Jannetta and Sekula and their staff as well as the fine caregivers at AGH!! (MVD #1 with Dr. Jannetta on 10/26/06, was spasm free for 14 months).

Keith Jelinek

Wantagh, NY (USA)
Left
2001
Yes
Yes
No





Botox Comments: I had Botox injections three times. The first two times were very successful, but had a droopy eyelid and reddening of the eyelid. The third time (12/02), the results were not as good. The twitching is still occurring, but is minimal.
Carolyn Jender

Yorkville, IL (USA)
Right
2001
Yes
No
Yes
2
10/31/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update as of 02/08/09 - I am doing well and still spasm-free, although twinges do happen, and when they do I am so frightful that the spasms are returning. I still have the numbness/paralysis in one spot on my face from the Botox. I do hope that before anyone uses Botox, or continues to use it for a long period of time, they consider the possible lasting side effects. (MVD #1 preformed on 10/23/03, also by Dr. Kassam, was stopped to improve the opportunity to preserve hearing.)

David Jensen

Malvern, PA (USA)
Left
1986
Yes
No
No




Botox Comments: Controls for 3-4 months.
Jane Jeziorski

San Jose, CA (USA)
Left
2000
Yes
Yes
No




Botox Comments: Botox very effective for the eye twitch; not so for the facial twitch. Had injections in the cheek area and ended up with a "Howdy Doody" smile...Oh Yucch....
Bonnie Johnson

Portland, NY (USA)
Left
2003
Yes
Yes
No




Botox Comments: Last year I received a Botox treatment and 3 days later my entire left side 'fell' to where I was unable to see out of my left eye.
R. W. (Bob) Johnson

East Helena, MT (USA)
Left
1998
Yes
No
Yes
1
07/11/03
Dr. Fred G. McMurry
Billings, MT (USA)
Yes

Botox Comments: Spasm Free for first 3 days. Some spasms on day 4,5,&6.
Kathy Johnson - TN

Knoxville, TN (USA)
Right
2000
Yes
No
Yes
1
08/16/06
Dr. Michael Horowitz
Pittsburgh, PA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments:
Kathy Johnson - VA

Mechanicsville, VA (USA)
Right
1984
Yes
No
Yes
1
07/16/97
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Mixed results - stopped spasms for a few months but at the expense of temporary muscle paralysis that sometimes left me looking like a stroke victim.

Click here to see my "Personal HFS History".

Post MVD Conditions - Scalp is still tender at site of incision even after all this time!
Wendy Johnson
Inactive Memb.
Douglassville, PA (USA)
Left
1992
Yes
Yes
Yes
2
10/19/99
Drs. Jannetta & Kassam
Pittsburgh, PA (USA)
No

Botox Comments: It's better than no treatments.

MVD Comment - I wish to be fixed. Dr. Kassam will not operate again, I am researching other facilities for help. I find it to be a hideous way to live. I can not get up for three days at a time due to serious head pain.
Jennifer Jones

Idaho Falls, IL (USA)
Right
2008
Yes
Yes
No





Botox Comments: Update as of 09/27/09 - Went for my first botox injection on 08/04/09 and two days later the twitching stopped. So far, it hasn't started again so I'm very pleased with the botox results.
Mark Jones

Ottawa, IL (USA)
Right
1997
Yes
No
Yes
1
03/14/02
Dr. Gail Rosseau
St. Luke's Medical Center, Chicago, IL
No

Botox Comments: I was desperate for some relief, it did the job. I felt a cycle of relief of my symptoms with each set of injections, good for a month then slowly the symptoms or variations of my original symptoms would appear.

MVD Comments -
Bob Josephs

Monroe Township, NJ (USA)
Right
2005
Yes
Yes
No





Botox Comments: First treatment (January 2006) worked for about two months. Second treatment (April 2006) is not working at all. Slow eye blink in affected eye, can't whistle, and distorted smile.
Dianne Joyce

Sydney (Australia)
Right

Yes
No
Yes
1
04/15/04
Prof. Michael Besser
Sydney (Australia)
No

Botox Comments: Using Botox for 2yrs. 4 injections immediatley around the eye every 3 months. Seems to reduce severity of spasm at eye. No obvious side affects. Perhaps a slight dryness in eyeball,(which could just be from the spasm).

MVD Comments: Update as of 04/24/08: I was one of the slow healers. Although I had absolutely no side effects from the surgery which went very smoothly it took me about a little over 2½ years to be “SPASM FREE”. Even now though I am spasm free about 95% of the time I do have the occasional relatively low intensity spasm (but still noticeable) usually associated with tiredness or stress. As long as the frequency or intensity doesn’t increase from this level I am not complaining. In fact I feel very happy and lucky to be where I am today. I didn’t regret having the MVD even when I wasn’t spasm free initially.
Yoshiki Kagawa

Fresno, CA (USA)
Right
1997
Yes
No
Yes
2
06/21/02
Dr. Nickolas Barbaro
San Francisco, CA.
No

Botox Comments: The Botox worked well at first, but lasted only for 3 to 4 months. As the spasms progressed down my face, the Botox was less and less effective. Side effects included dry eyes, blurred vision if injections were too close to the eye, and distored face.

MVD Comments: 2nd MVD resulted in an approximate 20% hearing loss and spasms remain. (1st MVD also with Dr. Nicolas Barbaro at UCSF Medical Center, San Francisco, CA on 01/11/02).
Jayne Kaiser

St. Thomas, Ontario (Canada)
Right
1988
Yes
Yes
No





Botox Comments: Helps condition for 3 months.
Jeryl Kam

Aiea, HI (USA)
Left
2008
Yes
Yes
No





Botox Comments: Botox around eyes and cheek. Seems the treatment may have been too strong. Left eye couldnt blink naturally so had to close both eyes from time to time to avoid dryness and also rest right eye which kept "winking."
Bobbie Kaplan

Willowbrook, IL (USA)
Left
1985
Yes
Yes
Yes
2
10/06/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: I have been taking Botox for about 10 years.They seem to lessen the severity of the spasm but does not stop the spasm altogether. Every time I have a shot I tell myself it is the last one, that I don't need it, but after a couple of months the spasms are very strong and hinder my vision. No side effects (at least as far as I can tell) so I keep getting the shots.

MVD Comments: (MVD #1 on 10/16/88 with Dr. Howard Reichmann, Maywood, IL (USA))
Denise Kaplan

Jackson. NJ (USA)
Right
2005
Yes
No
Yes
1
12/03/09
Dr. Peter J. Jannetta
Pittsburgh, PA (USA).
Yes

Botox Comments: botox.. 1st treatment too much by mouth..looked like bells palsy, 2nd treatment by eye only..much better but still have minor twitching, etc.

MVD Comments: Update as of 12/07/09 - I am so happy to report I woke up completely SPASM FREE, NO vomiting, nausea, or vertigo. I can't believe how great I feel and how blessed I am. I have no problem walking or doing things for myself. I feel like a new person and can't wait to go back home and participate in life again.

Fazale Kareem

Karachi (Pakistan)
Left
2001
Yes
No
No





Botox Comments: Botox did not work properly. On the contrary I found my left face disfigured and blinking increased.
Mike Karim

Santa Clarita, CA (USA)
Right
2003
Yes
No
Yes
1
10/24/07
Dr. John Alksne
La Jolla, CA (USA)
Yes

Botox Comments: Tried Botox for about 3 years. Results were unreliable. No side effects. Smile seems to be getting crooked. Stopped Botox in Feb.2006.

MVD Comments: Update as of 10/25/07 - I had my successful surgery yesterday with Dr. Alksne in San Diego. Dr. Alksne is great, and I woke up spasm free today. I am writing this e-mail from the hospital. I have a severe headache and some balance issues, which is to be expected. I am keeping my fingers crossed.

Janice Karnes
Inactive Memb.
Harrisonburg, VA (USA)
Right
1994
Yes
No
Yes
1
09/25/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: My last injections were June 2002. I can't lift my eyebrow and my face is saggy - is that HFS or the residue of Botox?

Click here to see my "Personal HFS History".

Karol Katz

Kansas City, MO (USA)
Right
2005
Yes
No
No





Botox Comments: Had one set of injections 7 weeks ago. Still have mild twitch--and my face is contorted. My eye does not close and my mouth droops.
Debbie Kelly
Inactive Memb.
Pompton Plains, NJ (USA)
Right
1988
Yes
No
Yes
1
06/99
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

MVD Comments: The surgery gave me a large portion of my confidence back. I became more the person I was before the spasms started. The surgery and Dr. Jannetta were both a miracle in my life. Would I do it again...You bet!
Marylou Kelly
Inactive Memb.
Seminole, FL (USA)
Left
2000
Yes
No
Yes
1
10/08/04
Dr. Michael Dogali
Clearwater, FL (USA)
No

Botox Comments: had a black and blue eye, couldn't shut my eye properly. It did last about 3 months.

MVD Comments: Still have eye and facial spasms, clicking in left ear during spasms. I had infection after the operation from the mesh that covered my skull. I took oral anti-biotics for 8 weeks and then had IV antibiotics for another 6 weeks, ended up with another surgery to remove the infected mesh.

Susan Kelly

Denver, CO (USA)
Right
2005
Yes
Yes
No




Botox Comments: I tried Botox 04/10/06 and I am experiencing some reduction in spasm.
Linda Kepler

Lawrenceville, GA (USA)
Left
2005
Yes
Yes
No




Botox Comments: I had my first botox injection on 11/30/07. It has helped a bit, they said it would take some time so I am still hoping for some relief.
Asia Kho

(Singapore)
Right
2004
No

Yes
2
02/20/09
Dr. Alvin Hong
(Singapore)
Yes

Botox Comments: I began Botox in May 2004, with an interval of 4-6 months, until September 2008.

MVD Comments: Update as of 02/28/09 - I'm home after my successful MVD #2 and I'm spasm free with no loss of hearing. (MVD #1 on 02/16/09 also with Dr. Hong).

Eric Kho

(Singapore)
Left
1997
No

No






Deah Killpack

So. Ogden, UT (USA)
Left
1986
Yes
Yes
No





Botox Comments: About 80% effective. It helps decrease my headaches and works very well around my eye, but when given around my mouth, I can't smile and I bite the inside of my lip.
Kathleen Kirsan

Lincoln, CA (USA)
Left
1985
Yes
No
No





Botox Comments: Only stopped it for 2 months, made side of my face sag, expensive.
John Kirsch
Inactive Memb.
Newton, IA (USA)
Left
2004
Yes
No
Yes
1
07/29/08
Dr. John M. Tew
Cincinnati, OH (USA)
Yes

Botox Comments: Does not work, painful to have injected in face.

MVD Comments: Update as of 07/31/08 - My 7th nerve was VERY compressed. There was some issues with my hearing aids and the possible loss of more hearing but Dr Tew monitored hearing throughout the surgery which resulted in NO hearing problems at all.

Doug Kirton

Kitchener, Ontario (Canada)
Right
1998
Yes
No
Yes
1
06/07/05
Dr. Michael Tymianski
Toronto, Ontario (Canada)
Yes

Botox Comments: Botox did not eradicate symptoms; it only lessened them. It caused facial asymmetry and affected my eyesight.

MVD Comments: As of 07/25/05 - My MVD surgery for HFS was successful, although I did not expect the recovery period to be so arduous. I experienced severe headache and nausea for about 10 days following the procedure. Seven weeks later I am still experiencing some vertigo and dizziness which may be due to swelling and fluid in the inner ear. I believe this problem is abating, although the progress is slow. My surgeon has referred me to an inner ear specialist if the symptoms persist into September, (or 6 weeks following my first post surgery follow-up appointment).
Steve Kiser

Goose Creek, SC (USA)
Left
2003
Yes
No
No





Botox Comments: I tried Botox twice. The first time it caused my face to droop and would not let my left eye close entirely. This caused my eye to dry out while I slept, and this caused a bad infection in my eye. This was very serious to because I am blind in my right eye. My doctor talked me into trying a lesser dose for attempt number two. This did not help me at all. I will not use botox again.
Cindy Kline

Ft. Collins, CO (USA)
Right
2000
Yes
No
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Sherry Knox

Washburn, ND (USA)
Right
1974
Yes
No
No





Botox Comments: Injection by the right eye in 1983 and it helped quite a bit but never completely got rid of the problem. The right side of the face seemed to get a bit more droopy and slowly the twitching and spasm has returned. This last year it has gotten worse fast.
Diane Koch

Westlake, OH (USA)
Left
1999
Yes
No
No





Botox Comments: Very effective in the beginning. Later most difficult to get right in the face, always some droop. Works good on keeping the eye open.
Calven Koh

Petaling Jaya (Malaysia)
Right
2004
Yes
Yes
No





Botox Comments: Manages to reduce the spasm for 3-5 months only.
Eileen Kondraski

Wilkes-Barre, PA (USA)
Right
2001
Yes
No
No





Botox Comments: I have seen 3 neurologists which all have suggested Botox. I tried the Botox almost 2 years ago and it did nothing!(3 injections). I am thinking of trying Botox again. Trying to get an appointment with another neurologist out of town.
Judy Kokernak

Melbourne, FL (USA)
Right
1997
Yes
No
No





Botox Comments: Botox - the best treatment. I had to suspend the use because I'm on chemo.
Jeremy Kratt

Goodrich, MI (USA)
Right
2000
Yes
Yes
No





Botox Comments: Botox, works well but just covers up. Just used once.
Karen Krueger

Cambridge, MN (USA)
Right

Yes
No
Yes
1
11/08/06
Dr. Michael J. Link
Rochester, MN (USA)
Yes

Botox Comments: paralyzed eyelids - but could still feel strong pulling in the muscles. Very dry eyes

MVD Comments: Update as of 12/09/06: It has been exactly one month since my MVD surgery on 11/08/06 t St. Mary's Hospital in Rochester, MN with Dr. Michael Link. I’m happy to report that I have been “SPASM FREE” free since waking up after surgery that day and for that I am very grateful.

My surgery lasted about 3 1/2 hours and Dr. Link reported that it was a very complicated surgery, with an artery going back through and between the 7th and 8th nerves and wrapping around. There were also many other smaller arteries that were involved. Dr. Link was very confident that they have taken care of the spasms completely and they will not return. The other complications that I am left with now are hearing loss in the right ear, weakness on the right side of my face, vertigo and loss of taste on the right side of my tongue particularly. All of these things have been improving except the hearing in my right ear.

Surgery was on a Wednesday morning and after recovery, I was moved to ICU for one night - on Thursday they moved me to the post op floor. Following surgery I had no spasms but had intense vertigo and double vision. Late Friday one of the nurses was determined to get me walking and we did it - but I was really only half there - but on the road to waking up. Saturday and Sunday went much better and Monday my doctors made the decision to move me to the Rehab Floor since I could barely use the bathroom on my own and could not get out of bed by myself. Tuesday I was moved to the Rehab Unit where I stayed for another 8 days until going home on 11/22/06. My hospital stay was 15 days and I am now going to Physical Therapy in Cambridge 3 times a week.

I was thinking in the hospital that the MVD was a mistake because recovery and some of the trade offs seem pretty drastic - but my husband helped me through that when he reminded me that I was nearly losing my mind with the constant spasms - and we now know from the results of the surgery that the spasms would have only become worse and the surgery would have eventually been more difficult for me. Like he just said yesterday - when I had spasms they were only getting worse - now after surgery I am daily showing progress in recovery so am daily getting better.

Right now there is no hearing that I can tell in my right ear, and I came home with a walker but I am able to walk throughout the house without help but I hold walls and countertops. My double vision is gone but I am having trouble with both eyes working together so it feels like I'm out of focus a lot. I am going to physical therapy and working on retraining my brain to work with my vestibular system which has been altered by the trauma to my 8th nerve (auditory). My right eye does not blink or shut, my right eyebrow doesn't raise and my mouth does not smile on the right side - the trauma to my 7th nerve.

All of this sounds miserable but I am convinced that Dr. Link did an outstanding job taking care of the spasm the very best he could given that he found difficult circumstances. He is very optimistic that the facial weakness is only temporary and that my equilibrium will be completely back to normal in a short amount of time. I had fantastic care at St. Mary's Hospital and we found that our Blue Cross Blue Shield insurance coverage was completely cooperative with all of my care - including the week in rehab and the ongoing rehab that was prescribed by the therapists at St. Mary's.

Raj Kumar

Boise, ID (USA)
Left
2007
Yes
No
No





Botox Comments: Didnt work.
Rudy Kurkjian

Temecula, CA (USA)
Right
2003
Yes

No






Angelia Kwok

Clovis, CA (USA)
Left
2001
Yes
No
Yes
1
11/05/08
Dr. Hrayr K. Shahinian
Los Angeles, CA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update as of 05/10/09 - It happened all of a sudden, exactly 6 months and 4 days after my MVD.......I noticed my spasms were completely gone. For the last month, I got intermittent twitches that lasted seconds, but still occurred whenever I ate or opened my mouth wide or faced a stressful situation. Another trigger was biting my lip. I've been playing with it for 2 days now, just to be sure, and I can't even "make" it happen. I think I’m now finally spasm-free. For those who had MVD and still have spasms......give it time.....and have faith.....things will get better!

For further details, click here to see my "MVD Diary

Sallyann Ladbrook

Perth (Australia)
Right
2000
Yes
No
No





Botox Comments:
Linda Laffey

St. Louis, MO (USA)
Left
1975
Yes
Yes
Yes
1
07/15/85
Dr. Alexander Marchosky
St. Louis, MO (USA)
No

Botox Comments: Seemed fairly effective at first (about 10 years ago or more); however, has always produced drooping mouth, eye that stays dry and tends toward infection, muscle weakness.

MVD Comments: The MVD did not "work" at all. Had a consultation for MVD #2 consultation on March 29, 2004 with Dr. Robert Grubb , Barnes Hospital/Washington University Medical School, St. Louis, MO (USA). Following the consultation, decided to stay with Botox for now.
Jose Lagos

Naples, FL (USA)
Right

Yes
Yes
Yes
1
07/15/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Sometimes effective

MVD Comments: As of 08/18/05, "SPASM FREE" but had a complete hearing loss on the HFS side and experience vertigo and balance problems.
Joseph Lai

Toronto, Ontario (Canada)
Left
2001
Yes
No
Yes
1
05/08/07
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Tried botox once. But I am concerned with the long term effectiveless of the drug and its effect on facial nerve.

MVD Comments: For details, click here to see my "MVD Diary.

Catherine Landis
Inactive Memb.
Los Angeles, CA (USA)
Left
2000
Yes
No
Yes
1
03/14/02
Dr. Hrayr Shahinian
Los Angeles, CA
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".
Leesa Lane

Lake Panasoffkee, FL (USA)
Right
1990
Yes
No
Yes
1
06/99
Dr. Peter J. Jannetta
Pittsburgh, PA
No


Jose Lagos

Naples, FL (USA)
Right

Yes
Yes
No





Botox Comments: Sometimes effective.
Carol Lanham

Woodstock, OH (USA)
Left
1998
Yes
No>
Yes
1
05/03/06
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments:

Susan Lankford

Abilene, TX (USA)
Left
2007
Yes
No
No





Botox Comments: I tried three sets of injections. They worked for a couple of weeks and then the HFS would return. The left side of my face started to look 10 years younger than the right side. It was not a permanent fix and I didn't think the time and cost involved was worth it.
Denise LaPoint

Gallatin, TN (USA)
Left
2001
Yes
No
No





Botox Comments: Botox 50 cc to 100 cc numbness around areas injected.
Cathy Larsen

Hastings, MN (USA)
Right
1991
Yes
No
Yes
1
11/08/04
Dr. Stephan Haines
Minneapolis, MN (USA)
Yes

Botox Comments: Initially effective but I've always had a lot of droopiness and I used to have excess tearing. I've been getting Botox for 13 years. For the past year it doesn't seem to stop the spasms much and I am very frustrated with the side effects.

MVD Comments: Update as of 11/09/07 - I am delighted to be able to say I am still SPASM FREE ! Immediately after finding this group I knew a MVD was right for me. Although my surgery was 3 years ago, I have only been spasm free for a little less than 2 years as it took 14 months post op for my facial nerve to heal completely. There were many times I thought my surgery was unsuccessful, as did my neurosurgeon, but patience paid off in the end. (I had HFS for 14 years with many Botox treatments during that time). I am going to send Dr. Haines a thank you note as he changed my life by taking care of my facial "deformity". He did train under the fabulous Dr. Jannetta so my thanks to him as well.
Mary Larson

Arlington Heights, IL (USA)
Right
1994
Yes
No
Yes
2
08/05/04
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: Injections beginning in 1999;six injections (upper and lower eyelids and cheek) resulting in dry eyes and slight paralysis and drooping of right side of mouth. Effective in cessation of spasms for a short period of time. Botox injections every four to six months, last series not as effective.

MVD Comments: Update as of 08/04/08 – It’s my 4th anniversary of MVD #2. After my 1st surgery, I said I would not hesitate to go back if I needed a 2nd one. Little did I know that I would do just that. But I enjoyed the short time I was spasm free after the 1st one and just had to try again. Four years being spasm free is truly a wonderful gift for which I am so thankful. Granted there have been a few times when I became anxious because of slight twitching, wondering just where it was headed. I am so grateful for this wonderful support group and for what it did for me when the members numbered around 180 when I joined, and for what it continues to do in the way of supporting others. (MVD #1 with Dr. Jannetta on 01/30/03 and was spasm free for 1 year).

Rosalie Lau

Sydney (Australia)
Left
1996
Yes
No
Yes
1
10/20/09
Dr. Michael T. Biggs
Sydney, (Australia)
No

Botox Comments: Experienced eyelid droop but this problem stopped after reducing dosage for eyelid. Movement during injection can also cause severe bruising around eye. First 2 weeks it's difficult to close eye. Effective around eye area but more difficult to control spasms around mouth.

MVD Comments: Update as of 10/22/09 – I feel absolutely great - eating and walking normally, no hearing loss or any other complications except for the ear fullness thing which doesn't bother me much. Initially, I woke up spasm free but the last 2 days have experienced some twitching - not anything like before but still a worry. My neurosurgeon was happy with the surgery, said the monitoring was encouraging. He found an artery (the AICA) pressing on my facial nerve. He moved that away and padded it with Teflon. But there is apparently a smaller blood vessel that goes between my 7th and 8th nerve. He said I must have been born with it, and he can't do anything about it. I hope in time all the twitching will stop - I guess after all I had HFS for 13 years.

Polly Layer

Redwood City, CA (USA)
Right
1991
Yes
Yes
No





Botox Comments: Botox does help, but I do need the shots every 4-5 months.
Becky Layman

Roanoke, VA (USA)
Right
2002
Yes
No
No





Botox Comments: They gave me too much and my mouth has never been the same!
Teri Ledbetter

Meridian , ID (USA)
Left
2008
Yes
No
No





Botox Comments: Botox injection 6/2009. Adverse reaction, he hit a nerve which caused my left side into paralysis.
Alton Lee

Singapore (Singapore)
Left
2001
Yes
Yes
No





Botox Comments: It help for 3 months to 4 months.
Katherine Lee

Huntersville, NC (USA)
Right
1994
Yes
No
Yes
1
08/21/07
Dr. Anthony Asher
Charlotte, NC (USA)
Yes

Botox Comments: Good results, usually. Results seem quite dependent on the skill / experience level of the doctor. Last injection had no effect, however.

MVD Comments: Update as of 04/25/08 - I woke up from my MVD surgery with “NO SPASMS” and no spasms to date.

Lawrence Lee
Inactive Memb.
Oak Park, IL (USA)
Left
1997
Yes
No
Yes
1
11/14/07
Drs. Peter J. Jannetta and Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: I have been using Botox for many years now to treat the left side of my face. Sometimes it works but its always temporary. When the Botox kicked in, it made me forget I even had HFS. But after 3-4 month, it comes back and its upsetting. That’s the problem with Botox, when it works, it make you ignore the severity of HFS. After awhile the spasm has moved down the left side of my face and is pulling my mouth and neck. Because HFS gets worse over time it made me realize I have just been treating the symptoms, which is like ignoring I have this, when I should have been looking for a permanent solution all along.

MVD Comments: Update as of 03/04/08 - I am very happy to report that although it took 4 months, I am now spasm free! I had my surgery with Dr. Peter Jannetta and Dr. Ray Sekula at Allegheny General on Nov. 14, 2007. My spasms were still there after the surgery but not as intense, and gradually got less and less. Only when my wife asked me a few days ago how my spasms have been did I realize, oh it's gone! I didn't even notice because it was so gradual and slight. I have to give deep thanks to Dr Jannetta and Dr Sekula for a great successful MVD. They are the absolute best and they have given me my life and my confidence back. And thanks to the HFSA group, I was able to make an informed decision about doing the MVD. Thank you.

Mary Lee

Croydon (United Kingdom)
Right
1996
Yes
Yes
No





Botox Comments: Botox is the only thing that relieves it temporarily for sometime 6 weeks to 8 weeks. I'm impressed as only thing that seems to work for awhile but sometimes I get bad headaches.
Setiaman Lee

(Singapore)
Right
1996
Yes
No
Yes
1
09/21/04
Dr. Tseng Tsai Yeo
(Singapore)
No

Botox Comments: When the spasms become worse and I can't hold them I visit my doctor to get Botox. Have gotten Botox injections twice, so far it stops the spasms but I lost my smile.
Bill Lehn

Shakopee, MN (USA)
Left
2000
Yes
Yes
Yes
1
12/20/05
Dr. Mark Larkins
Regions Hospital, St.Paul MN (USA)
No

Botox Comments: Botox for 2.5 years. Worked at first to mask the effects but the spasms were sill there. (see below)

MVD Comments: Update as of 12/20/07 - Two years after my surgery the spasms are no better or worse. I have learned to live with them but need the Botox every three months. My doctor has found the correct spots/dose to get me through for the 3 months. I often wonder "what if I would have gone to PA for the surgery, would they been able to find my compression because they do so many surgeries”? If I knew they could fix it I would try it again. I have learned to deal so no new plans at this point.

Anne LeMay

Zephyrhills, FL (USA)
Left
1990
Yes
No
Yes
1
10/28/04
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: I had Botox injections by my neurologist every 3 months for 5 years. The twitching never completely went away with the injections, but they did seem to lessen for a month or so after each treatment. I did lose a lot of muscle tone in my face and eyelids and found that looking in the mirror was more depressing than the twitching was. My last Botox treatments were two years ago, when I had what I believe was a bit of a remission (the twitch was still there, but the intensity was lessened). I stopped the Botox at that time.

MVD Comments: I feel like a new woman.
Helen Lembeck

Chula Vista, CA (USA)
Left
2004
Yes
Yes
No





Botox Comments: Botox injections every three months - works to prevent the fluttering and spasms, but results in paralyzing the left side of my face!
Joelle Lemery
Inactive Memb.
Chalons en Champagne (France)

Right
1992
Yes
No
Yes
1
05/09/06
Dr. Jacques Magnan
Marseilles (France)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Coments:

Douglas Levangie
Inactive Memb.
New Liskeard Ontario (Canada)
Left
1996
Yes
No
Yes
1
06/13/01
Dr. Fred Gentili
Toronto, Canada
No

Botox Comments: Had injections six times. The first injections worked fairly well for about three months. Each subsequent injection worked less well until no relief at all. No serious side effects with injections, some trouble closing left eye for the first two weeks after injections and numb feeling in left side of face.

Post MVD Conditions - As of 6/22/01, awoke with spasms, but spasms seem to have subsided slightly over the last week, but still there.
John Lewis
Inactive Memb.
Colorado Springs, CO (USA)
Left
1985
Yes
No
Yes
1
01/07/01
Dr. Michael Brown
Colorado Springs, CO (USA)
No


Joy Lewis

Chicago, IL (USA)
Right
1980
Yes
No
Yes
1
07/24/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: About 2 years ago started Botox injections, first one was heaven and the rest have helped as well. The first time, that side of my face was so relaxed and as a result, my whole body was much more at ease in NOT fighting the spasms (realized how subconscious that physical reaction was). Have had injections 3-4 times a year for about the past 2 years and they have been very effective for me.

MVD Comments: Update as of 07/29/08 – I have been “SPASM FREE” for the last 2 to 2 1/2 years. It was a very slow process and a bit confusing, especially when trying to understand whether I would need a second MVD or not. I kept seeing small improvements, so I decided to wait. It paid off. I hope to write my diary, w/emphasis on long term healing -- by year's end! The HFSA made it all possible! I will be forever grateful!

Marcia Licata

Pittsburgh, PA (USA)
Left
1999
Yes
No
Yes
1
03/20/01
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes


Paula Lindsey

Molile, AL (USA)
Left
2005
Yes
Yes
Yes
1
07/12/07
Dr. Troy Middleton
Mobile, AL (USA)
No

Botox Comments: Does control spasms, but continued use is concerning.

MVD Comments: Update 05/30/09 Spasms returned days after surgery and continue to worsen. Began Botox within 3 months of MVD. I am now almost 2 years post MVD and am considerring returning to my neurologist for possible second surgery.

Eric Little

Fisherville, KY (USA)
Left
2000
Yes
No
Yes
1
05/09/06
Dr. Laligam N. Sekhar
Seattle, WA (USA)
No

Botox Comments: I started in 2000 with Botox and hated it, but now that tegretol isn't working have had to go back to botox. Am on my second dose and it is having the usual side effects regarding loss of smile with only slight effectiveness.

MVD Comments: Update 10/02/06 (5 Months post-op) 1) Hearing Loss: almost 100% in the hfs ear. I can hear some random noises - as long as it's otherwise quiet. 2) Severe Facial Weakness: Very slight improvement, but mostly the HFS side is motionless, sometimes side. 3) Eyelid Doesn't Blink Properly - my HFS side eyelid wouldn't close all the way. Has improved a bit, but still isn't back to normal. 4) Occasional Flutters: because the HFS side is pretty much paralyzed, I don't get many twitches now. But I can kind of feel it still lurking "underneath", and I can hear slight buzzes when the flutters happen.

Other than that I am back to normal. My balance and taste have both returned, and the swelling in my tongue is gone. It didn't take long to put back on the 10 pounds I lost during the week of surgery.
Judi Liu

Redmond, WA (USA)
Right
1991
Yes
No
Yes
1
06/29/07
Dr. Robert C. Rostomily
Seattle, WA (USA)
Yes

Botox Comments: I had 3 injections. Only in the second month of 1st injection, I had peaceful time of spasm. It's not effective in my case. Compare my spasm before and after Botox (9 month period), before was more of twitching the muscle around the eyes and cheek with pulling up the corner of mouth, now spasm is close the right eye and pull up the mouth for several seconds (tightening not twitching), then let go.

MVD Comments:

Robert Lively

Las Vegas, NV (USA)
Left
2001
Yes
No
Yes
1
08/31/05
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Treated spasms well at start had to increase number of injections over time which caused appearance to be unbalanced along with a number of other uncomfortable side effects.

MVD Comments: Update as of 08/31/09 - Its been 4 yrs and still spasm free. I did loose my hearing in my left ear, hfs side. Have small problem with balance nothing major. All hfs symptoms resolved.

Alan Loffert

Orlando, FL (USA)
Left
1994
Yes
No
Yes
1
05/21/04
Dr. Albert Rhoton, Jr.
Gainesville, FL (USA)
Yes

Botox Comments: No real relief or benefit

MVD Comments: I lived with HFS for nearly 10 years and just about every picture of me during that period of time reflects my eye closed. Since having MVD in May 2004 I have had 100% relief and almost forget I ever had this problem. Can't beleive I waited so long to do it.
Janet W. Long
Inactive Memb.
Richmond, VA (USA)
Left
1983
Yes
No
Yes
1
10/07/94
Dr. K. Singh Sahni
Richmond, VA
Yes

Botox Comments: Botox did not help. The one time it was used it caused facial drooping.

Post MVD Conditions - None

Susan Lopez

Chicago, IL (USA)
Left
2000
Yes
No
Yes
1
06/30/09
Dr. Christoper Getch
Chicago, IL (USA)
No

Botox Comments: Botox from 2002-2008. I stopped the Botox August 2008 because it became less effective as the years went by and sometimes I couldn't close my left eye, causing dryness. I'm was also tired of having the left side of my face paralyzed by Botox.

MVD Comments: Update as of 07/22/09 - I had my MVD 3 weeks ago and still have spasms. The doctor told me in the recovery room that there's no lateral spread, so he thinks he got the right spot, but that it will take the nerve some time to heal. Thanks to reading the experiences of others. I have had HFS for over 10 years, so I guess I can't expect the nerve to be healed immediately. Thanks to all of you for the encouraging words. I can't tell you how much comfort they bring me.

Jenny Low

(Singapore)
Right
2000
Yes
No
Yes
1
10/13/09
Dr. John Thomas
(Singapore)
Yes

Botox Comments: It was effective in the beginning but the twitching duration is getting shorter and shorter as the years goes by. Sometime the face was felt like being pulled to one side.

MVD Comments: Update as of 11/03/09 - Still no sign of twitching, the headache and giddiness is getting better and better. I consider myself “SPASM FREE” since surgery and wish that this spasm free status will be with me for life. My operation was considered a straight-forward one with no complications. I'm glad that I made this decision and have never regretted it!

For details, click here to see my "MVD Diary".

Ann Loyd
Inactive Memb.
Houston, TX (USA)
Right
2002
Yes
No
Yes
1
11/14/05
Dr. Subrata Ghosh
Houston, TX (USA)
Yes

Botox Comments: Botox worked for 3mo at a time. It worked to slow down but not stop the twitching.

Click here to see my "Personal HFS History".

MVD Comments:
Dana Lucas

McMinnville. OR (USA)
Left
2000
Yes
No
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Peggy Lucas

Homer City, PA (USA)
Right
2004
Yes
Yes
No





Botox Comments: Botox injections twice - first one they did the whole side of my face (even tho' the Dr. had diagnosed it as blepharospasm) & my mouth developed an extreme droop. The first one did not help my eye much. The second set was done just around the eye & it seems to help for the eye - now I'm having more spasms in the cheek & mouth area.
Reba Lucas

Jenkins, KY (USA)
Right
1996
Yes
Yes
No





Botox Comments: Botox has helped me to keep my sanity; however, I wish I did not have to take it. It leaves me with the sagging face & lopsided smile. It helps with my eye, but creates havoc from the eye down.
Judy Lyman

Surprise, AZ (USA)
Right
1999
Yes
No
No





Botox Comments: While it works, I don't like what it does. I have trouble forming some words, I have difficulty in drinking and eating, my eye dries out because I can't blink very well
John MacBain
Inactive Memb.
Carmel, IN (USA)
Right
1992
Yes
No
Yes
1
10/06/05
Dr. Troy Payner
Indianapolis, IN (USA)
Yes

Botox Comments: Tired of a drooping face

MVD Comments: For details, click here to see my "MVD Diary".

Victoria MacDonald

Melrose, MA (USA)
Left
2003
Yes
Yes
No





Botox Comments:
Douglas Macdougall

Medicine Hat, Alberta (Canada)
Left
1997
Yes
No
Yes
1
11/23/04
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: 2 rounds. Eye remarkably better. Cheek better. Mouth slightly better but lots of cheek biting when eating. Second round of botox less satisfactory, and led to decision to have surgery.
Deb Machak
Inactive Memb.
Gurnee, IL (USA)
Right
2004
Yes
No
Yes
1
08/06/07
Dr. Gail Rosseau
Chicago, IL (USA)
No

Botox Comments: My third botox treatment gave me bell's palsy, which took about 6 months to completely dissipate.

MVD Comments: Update as of 04/17/09 - The frequency of spasms has lessened since surgery. I was spasm free for 4 days following surgery. Significant spasms occur when reading fine print, speaking in front of a group, when I'm upset, or when I'm trying to concentrate.

Glenn MacLaren

Launceston (Australia)
Left
1996
Yes
No
No





Botox Comments: Not very effective. The facial distortions were severe (many people commented I had Bell's Palsy. Did not stop the twitching and the corresponding headaches in the right front of the head and the stiff nape of the neck.
Doug Magnuson

Willmar, MN (USA)
Right
2002
Yes
No
Yes
1
09/18/08
Dr. Michael J. Link
Rochester, MN (USA)
Yes

Botox Comments: Botox worked great the first time, each subsequent injection did not have the same effect for me as the very first injection. I was impressed the first time as it did relieve the symptoms. I was injected near the eye lid one time, experienced dry eye due to not being able to blink properly. Last Botox injection was May 2007.

MVD Comments: Update as of 12/09/08 – Follow-up at Mayo Clinic Audiogram showed no hearing change post-op, Dr. Shelly Cross (neurologist) and Dr. Michael Link (neurosurgeon) very pleased with results. Dr. Link said that he’s reasonably sure that the spasms won't reoccur and that I am cured of the spasms. He was happy that I experienced no spasm post-op as that is not always the case. He advised that I can resume all normal activities, lifting, etc. Hooray!!

Keira Majors

Huntsville, AL (USA)
Left
1994
Yes
No
Yes
2
11/26/01
Dr. Winfield Fisher, III
Birmingham AL
Yes

Botox Comments - Botox before my MVD seemed to help, but I had to get enough to basically paralyze the entire left side of my face. I have 3 injections since my MVD and they have not helped at all. Before the first MVD, I never had any spasms involving the ear, but afterward, the Stapedius muscle inside my ear was the muscle most frequently involved in spasms,and it cannot be reached with Botox.

MVD Comments - MVD Comments - MVD # 1&2 with Dr. Winfield Fisher, III, 2nd on 11/26/01, 1st on 08/09/01 - was Spasm Free after #2 until 12/02.
Abby Malseed

Harrisburg, PA (USA)
Right
1997
Yes
No
No





Botox Comments: They couldn't get the dosage correct, I suffered from paralysis.
Rick Manus

German Valley, IL (USA)
Left
1990
Yes
Yes
No





Botox Comments: At first they lasted 6 months. In the last two years they only last 2-3 months.
Noel Mariano

Atlanta, GA (USA)
Right
2000
Yes
No
Yes
1
04/30/08
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments - Doesn't totally hide the twitching.

MVD Comments - MVD Comments - Update as of 01/04/09: My MVD went thru very well without any complications and no loss of hearing except for some movement in the right eye for a few days. It's been 8 months and no spasm at all and hopefully this will continue.
Bertha Marin

Houston, TX (USA)
Left
2001
Yes
Yes
No





Botox Comments: Have only had one treatment, about 5-6 injections, but not sure if I want to continue due to side effects that can occur.
Massimo Marini

Montville, NJ (USA)
Right
2001
Yes
Yes
No






Sheila Martens

Perryville, MO (USA)
Right
1998
Yes
No
No





Botox Comments: never took the twitch away, the face really pulled, & the eye droops, it closes when I try to read.
Mitch Martin

San Antonio, TX (USA)
Left
1989
Yes
Yes
No





Botox Comments: Typical good news, typical bad news. Dermatoligist administered. Problem is to get insurance to help pay.
Mary Anne Maslanka

Locust Grove, GA (USA)
Left
2002
Yes
No
Yes
1
07/01/05
Dr. Jeffery Olson
Atlanta, GA (USA)
No

Botox Comments: My face swelled. Severe headache that lasted for days, severe bruising at injection sites, face drooped significantly...all with just one treatment...and my face was still in motion...did not try it a second time.

MVD Comments: Update as of 07/01/08 - My spasms are now worse than before surgery, affecting my speech and sight. They are not really painful, but very uncomfortable and I feel tired all the time. I do not currently have sufficient insurance to undergo another surgery.....I have learned to live with the inconveniences.
Donna Mattingly

Coxs Creek, KY (USA)
Left
2007
Yes
Yes
No





Botox Comments: It has helped but made my eye appear lazy. Still feel twitching in the eye and nose and a pulling on my mouth.
Russell Mayes

Woodbridge, VA (USA)
Left
2002
Yes
Yes
No





Botox Comments: Just started--did not get shots right near the eye--and as a result eye twitching so far is the same--very distracting--hard to carry on day-to-day work conversations with my eye all over the place!!
Diane McClain

Springfield, IL (USA)
Right
2003
Yes
No
Yes
1
08/16/04
Dr. Gail Rosseau
Chicago, IL (USA)
No

Botox Comments: I had my first series on 05/30/03 (28 injections). I have some drooping on the right side of my mouth, but I can live with that better than I could the spasms! Now I only have spasms in my lower face at night when I lay down, and not as many butterflies beating their wings in my ears. As soon as the spasms start up even slightly I will begin the process to obtain insurance approval and try it again (avoiding the location that caused the drooping) and hope it is as effective.

MVD Comments:
Jim McCormack

Charlotte, NC (USA)
Right

Yes
Yes
No





Botox Comments: Botox-works pretty good, but I must go to the neurologist about 3 times a year-injections.
Darrin McCoy
Inactive Memb.
Olathe, KS (USA)
Left
2004
Yes
No
Yes
1
10/31/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Only lastsabout 3 months and doesn't seem to stop the twitching completely. Stopped Botox as I'm pursuing a MVD.

MVD Comments: Update as of 11/21/07 - MVD was successful but for the first time in Dr. Jannetta’s 40 years, I developed hydrocephalus from the surgery. Was very sick and in ICU for last 1 1/2 weeks. Had 3 procedures total, including the initial MVD. They have theorized that if it is Chiari the hydro from it may have been his headache problem all along. Time and testing will tell. The spasms are still gone as of now and for that I'm so grateful!

Janice McCoy

Lewisville, NC (USA)
Right
2002
Yes
No
Yes
1
01/12/09
Dr. Mark A. Lyerly
Winston-Salem, NC (USA)
No

Botox Comments: Effectively stops spasms but only for a couple of months, and over 4 weeks of severe eye irritation after each treatment.

MVD Comments: Update as of 01/13/10 - No real changes to report. I am still having spasms. To me, they feel about the same, and actually at times around my mouth and cheek they feel worse, although around my eye there seems to be a very slight reduction in spasms. I still have some numbness around the incision area, although it is gradually lessening. There is a strong possibility that I will seek a second MVD in autumn of this year, this time with Dr. Jannetta.

Jim McDonald

St. Ignace, MI (USA)
Left
2001
Yes
Yes
Yes
1
06/21/06
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: works on occasion ... sometimes effective and sometimes like I never had it at all.

MVD Comments: As of 08/25/06 - 98% of facial palsy is gone, still no hearing in left ear & poor body balance, partial numbness on right side of hip and right leg but resuming regular activities.

Colleen McDoniell

Summerdale, AL (USA)
Left
2004
Yes
No
No





Botox Comments: Botox worked the first time, I had some minor droppiness of my eyelid and mouth but the spasms stopped completely for one year. I recently had my second injection and so far the only thing it has helped is my left eye no longer shuts completely during a spasm.
Molly McElvain

Pinckneyville, IL (USA)
Left
1998
Yes
Yes
No





Botox Comments: It seems to work for me for 3 months at a time, then it wears off and the spasms return.
Karen McFaddin

Sammamish, WA (USA)
Left
1981
Yes
No
Yes
1
02/23/01
Dr. John Loeser
Seattle, WA
Yes

Botox Comments: I think it was difficult for the Dr. to pinpoint the exact spot to insert the botox, sometimes I would have a droopy eye, other times a droopy entire left face though I remember one time telling him to "zap" the entire area as I was sick of the constant spasms!!!

Post MVD Conditions - Slight hearing loss, could be due to the aging; slight droop & weakness on MVD side of face but nothing I would consider an ongoing permanent complication.(12/14/03)

Brian McFarlane

Regina, Saskatchewan (Canada)
Left
2003
Yes
No
Yes
2
05/27/08
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Didn't really do anything except cause my face to droop.

MVD Comments: Update as of 06/02/08 - My wife and I arrived back in Regina on the evening of 05/31/08. My surgery went well, and I woke up with “NO SPASMS”!! Oh, what a feeling! The headaches are very minimal, and at this time almost non-existent. Just to let things heal now. Thank you all for your thoughts and prayers. Time to rest,(MVD #1 with Dr. Kaufmann on 05/22/07).

James McGonigal

Chicago Ridge, IL (USA)
Right

Yes
Yes
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

Gloria McKeague
Inactive Memb.
Dublin (Ireland)
Right
1999
Yes
No
Yes
2
08/19/09
Drs. Peter J. Jannetta & Ray Sekula
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox would leave my eyelid and mouth drooping. Other times I wouldnt be able to close my eyelid, which made sleeping and showering difficult (OOCH soap/shampoo). I'd have double vision and still could feel the spasm in my head. The shots would only last 4-6 weeks.

MVD Comments: Update as of 09/06/09 - I woke up the day after surgery with spasms with less intensity then before. For the next 4 days they became lighter and fewer until they stopped completely. I'm spasm free! (MVD #1 with Dr. Jannetta on 07/31/08 - Was spasm free for 3 months).

Charlotte McKinney
Inactive Memb.
Fredericksburg, VA (USA)
Right
1993
Yes
No
Yes
1
08/01/01
Drs. Kassam & Horowitz
Pittsburgh, PA
No

MVD Comments: For details, click here to see my "MVD Diary".
Lynn McKay

Surrey, British Columbia (Canada)
Left
1992
Yes
Yes
Yes
1
11/10/01
Dr. Felix A. Durity
Vancouver BC (Canada) Seattle, WA
No

Botox Comments: Controls eye spasms to some extent, but not mouth area.

MVD Comments: Was spasm free immediately after MVD until April 2006, 4 1/2 years. Symptoms gradually emerged and I now require Botox to control spasms.

Sheila McLaughlin

Cincinnati OH (USA)
Right
2007
Yes
Yes
No





Botox Comments: I'm on my first Botox treatment, 02/20/09. So far, the twitching is more pronounced than before.

Scheduled for MVD on 03/05/10 with Dr. John Tew, University Hospital, Cincinnati, OH (USA).

Angela McMillen
Inactive Memb.
Little Rock, AR (USA)
Left
2002
Yes
No
Yes
1
07/06/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: droopy left side after injections. Lost smile. Eye dry.

MVD Comments: Update as of 08/2007: Feeding tube for 4 weeks, lost 20 pounds, dizziness, left side facial paralysis.

Anna Michael
Inactive Memb.
Port Orange, FL (USA)
Right
1989
Yes
No
Yes
2
10/18/05
Dr. Anthony Asher
Charlotte, NC (USA)
Yes

Botox Comments: I used Botox for at least 2 years. It worked well at first, then gradually lost effectiveness. But I would have stopped using it anyway because I began to look like a stroke victim as the right side of my face began to sag. My right eyelid would not close. My eye no longer produced tears. I had to carry eye drops with me at all times. I had to close the eye with my finger to keep it lubricated. I stopped Botox over 2 years ago. Forunately the side effects gradually faded after about a year.

MVD Comments: As of 10/22/05 - I am very happy to announce that I am now "SPASM FREE"! I felt a couple of tiny flutters in my eyelid while I was in ICU on Wednesday, but since then, my face has been calm and serene, moving only when I want it to.(MVD #1 on 07/07/05 also with Dr. Asher)

Sherry Miller

Jackson, TN (USA)
Right
2004
Yes
No
No





Botox Comments:
Tammy Millikan

Beaver, OK (USA)
Right
1998
Yes
No
No





Botox Comments: Botox gave some relief but caused other effects in my face that were as bad as the spasms.
Betty Mitchell

Garland , TX (USA)
Right
1970
Yes
No
No





Botox Comments: I was very happy with the results of the first treatment. The injection was around the eye only. I experience slight drooping of the eyelid, but the spasms did not come back for six months. With the second treatment I was injected around the right eye and the cheek as well. The side effects was unpleasant. The eye drooped for at least three weeks, and my smile was lopsided. Both eyes became very dry and red and this lasted at least a week. I will not get Botox again.
Terry Mizrahi

New York NY (USA)
Left
2000
Yes
No
Yes
1
02/11/09
Dr. Raj Shrivastava
New York City, NY (USA)
Yes

Botox Comments: Botox for 6 years. Worked reasonably well but made eye asymmetical. Pulling/spasm got worse over time.

MVD Comments: Update as of 02/17/09 - So far so good thank God. It's 6 days; headache continuing; hard to sleep; little nausea now. Energy coming back but understandably somewhat tired. Doctors sees it in a good light (so far). Post MVD CAT SCAN was good.

Jane Moldaschel

Windom, MN (USA)
Left
2007
Yes
Yes
No





Botox Comments: Update as of 08/13/09 - Each of 3 treatments with Botox injections have caused drooping, paralysis, and asymmetrical facial expressions despite lowering the dose injected each time. After each injection, I continued to experience lighter twitches for about 7 weeks with spasms gradually returning soon after. I called my neurologist today to express my disappointment with Botox and discuss other possible treatments including MVD. I have an appointment for Botox injections again next month and am considering canceling but feel hopelessly lost as to what treatment to pursue next.
Marlene Montgomery

Gilbert, AZ (USA)
Left
1985
Yes
No
Yes
2
05/15/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA) Seattle, WA
Yes

Botox Comments: tried botox for about 2 1/2 years. got the shots every three months or so; sometimes I felt like they deadened the spasms but they also often deadened the whole side of my face, causing a lopsided smile and just a strangeness, an asymmetry that was almost as bad as the ticking...except the odd look was constant while the botox was working. One day I woke up with a wrinkle (on the left side only) from the side of my nose down to my chin; it's getting deeper all the time. Now, I don't know if it's just that creep, father time, but I blame the botox for my wrinkle. I stopped with the botox injections when I made the decision to have surgery, and haven't and won't resume botox treatment.

MVD Comments - MVD #2 Update as of 05/22/08 - No words can express the respect and gratitude I have for Drs Jannetta and Sekula. Briefly, the left side of my face and head are sore so is my neck and I have fullness in my left ear. The volume in my left ear is about half of my right, and I hear my voice echo when I talk. I think I’ll recover the hearing over time, and know the soreness will go away. Dr. Sekula said that once inside the problem was obvious, a vein bundled with and on the bottom side of the 7th nerve. He took a micro-hook, tugged on the vein, it broke, and my spasms stopped. The vein was too small to cauterize so it was pinched off. The surgery was an ordeal, but I’m recovering and couldn’t be happier. Just one note of interest, over the years I developed lots of facial weakness and a deep line from my nose to the corner of my mouth then down into my chin on my hfs side. I didn’t expect any change (except worsening with age), but that deep line is almost gone now; the facial weakness is improving – it’s amazing. (MVD #1 with Dr. Kris A. Smith on 08/09/99).
For details, click here to see my "MVD #2 Diary.

Lois Moore
Inactive Memb.
Arley, AL (USA)
Right
1994
Yes
No
Yes
1
03/14/05
Dr. Winfield Fisher, III
Birmingham AL (USA)
No

Botox Comments: Frozen face, especially mouth. Big sag at mouth. The spasms didn't cause that, the Botox did. People asked if I'd had a stroke (so did a doctor). Unable to smile. Couldn't eat a sandwich. Had trouble getting right side of mouth open enouth to use a fork. Never, never will I use it again.

MVD Comments:
Marty Moore

Las Vegas, NV (USA)
Right
1996
Yes
No
Yes
1
03/01/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox subdued spasms but subsequent droop and loss of facial control is unacceptable.

MVD Comments: Update as of 07/04/08 - I lost most of my hearing in my right ear and I still have some weird sensitivity around my incision site, but I would do it all again in a heartbeat to get rid of the spasms. My calm face, self esteem, basically having my life back and most importantly, having my smile back, are much more important to me than being able to hear 100%.

Peggy Moore
Inactive Memb.
Windsor, CA (USA)
Left
1988
Yes
No
Yes
1
12/01/99
Dr. Stephen Nutik
Redwood City, CA
Yes

Botox Comments: Had pretty good effect with first 1 1/2 years of shots from an experienced neurologist, but the effectiveness started to wane. Then had to switch to a different neurologist who was new with Botox and gave me too much. That's when I decided to do the MVD.

Post MVD Conditions - None
Rosemary Moore

Bacliff, TX (USA)
Left
2001
Yes
No
Yes
1
05/15/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: Update as of 06/12/08 – My spasms are gone, thank God! I've lost my hearing in my left ear and with it my sense of balance and my eyes are crossed, supposedly all problems will resolve with time except the hearing which is gone forever. I feel good but the balance and vision thing is a nuisance. I'm at least 50% up to par with strength and stamina and to date I haven't lost my sense of humor so I'm doing pretty darn good. Regardless of my current problems I would still have had the surgery.
For details, click here to see my "MVD Diary.
Sonia Moore

Lubbock, TX (USA)
Left
2005
Yes
No
Yes
1
09/27/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Droopy eye & lip. I looked like I had suffered a stroke for about a month after the injection. However, after the first month the Botox held the spasms for a couple of months.

MVD Comments: Update as of 01/22/08 - I’m officially “SPASM FREE”. I told Jack last week about being free of the spasms but I was a little hesitant to make it official because I was afraid they would return. However, I feel safe in saying that I no longer have the spasms and I’m enjoying wearing eye makeup again! I even tested it out with my husband and my children to see if any of them could see the spasms and none of them could. I also want to continue to be a part of such a wonderful organization to encourage others who are suffering with spasms because I know the ordeal that people go through with this disorder. I’m just so grateful to know that there is a chance for a cure rather than having to suffer with the spasms and that the success rate is so high. Again, I thank each and everyone for your support and I’m so happy to say that nearly four months after the procedure I am able to smile again. Please know that I can be of any assistance to you in any way, please do not hesitate to ask!

For details, click here to see my "MVD Diary".

Gail Moran

Glen Cove, NY (USA)
Left
1987
Yes
Yes
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Ilona More

Scottsdale, AZ (USA)
Right

Yes
Yes
No





Botox Comments: Botox for 4 years no side effects, little help.
Steve Morse

Atlanta, GA (USA)
Right
1998
Yes
Yes
Yes
1
01/29/04
Dr. Christopher Clare
Atlanta, GA (USA)
No

Botox Comments: I have been receiving injections since 1999, I think. The effects have not lasted very long recently, to the point where they basically only mildly helped for a month or so the last two times.

MVD Comments:
Edna Moskaira

Union City, CA (USA)
Left
2002
Yes
No
Yes
1
08/16/07
Dr. Federico Castro-Moure
Oakland, CA (USA)
Yes

Botox Comments: Seemed to reduce the frequency of the spasm but not much.

MVD Comments: Update as of 09/10/07 - It's been 25 days now since surgery and I am “SPASM FREE” from day 1 after the surgery. Dr. Castro-Moure and team were all very compassionate and caring. I stayed 4 days in the hospital because I was nauseated for 2 days after the surgery, due to the effect of the anesthesia and the pain reliever. Other than that everything was perfect. However, after two weeks, I experienced fullness in my left ear and buzzing. I got so worried and made an appointment and I was seen by Dr. Patel on 09/07/07. Dr. Patel found that I have fluid in my left ear, prescribed Sudafed. It is working well as of this moment. Hopefully, things will normalize.

Michelle Nelimark

Queen Creek, AZ (USA)
Right
1994
Yes
No
Yes
1
10/19/09
Dr. Robert Spetzler
Phoenix, AZ (USA)
Yes

Botox Comments: Have used Botox for 10 years. Last set of shots was in June of 2009, but decided to stop as they seem to be less effective and am looking into having the MVD procedure.

MVD Comments: Update as of 10/31/09 - I am happy to report I am spasm free!!! I had a few twitches about a week post-op that were completely different than I had experienced before and they fortunately went away with rest. My only concern now is the length of time it's taking me to recover. I went to have my stitches removed 2 days ago and ended up getting re-stitched because the wound had not healed yet. I also passed out at that visit when he was taking the stitch out from my back (from the lumbar drain). We think it was due to the pain experienced during the re-stitching since I didn't have anything to numb me up first. The other complication (or annoyance) I have is hearing loss in my right ear (the MVD side). I'm hoping that will go away soon as my job requires me to listen. (I do medical transcription).

Mary Neufeld

Schenectady, NY (USA)
Right
2005
Yes
No
No





Botox Comments:
Frances Ng

(Singapore)
Right
1976
Yes
No
Yes
1
07/27/06
Dr. Peter Hwang
(Singapore)
Yes

Botox Comments: Tried in 1997-1998. Quite effective but smile was still slightly crooked. Stopped in 1999 as I got married & planned to have kids. Did not try it again & thought I'd just live with HFS.

MVD Comments: Click here to see my "MVD Diary".

Jimmy Ng See Soon

Bentong (Malaysia)
Right
2004
Yes
Yes
No





Botox Comments: First tried 12 units round the right eye and one month later 25 units on the eye and the side of the face and mouth. Can still feel the twitching and the hammering sound in my right ear is still there.
Thinh Nguyen

Saigon (Vietnam)
Left
1990
Yes
No
Yes
1
07/19/01
Dr. Peter J. Jannetta
Pittsburgh, PA
No

Botox Comments: Some what effective but created double-vision and weak facial muscles.

Post MVD Conditions - I still have what they called residual spasm and it's slowly getting worse since my sugery. Two and a half months after my surgery, my spasms are back to about 80% of the level before the surgery. It was about 15% immediately after the surgery.
Linda Nobles

Ashville, NY (USA)
Both
2002
Yes
Yes
No





Botox Comments: Only started in Dec 2007. Too much in mouth area, lost control of upper lip and no longer able to smile.
Denice Noice

Buena Park. CA (USA)
Right
1996
Yes
No
Yes
1
12/11/03
Dr. Choi
Anaheim CA (USA)
No

Botox Comments: Botox reduced severity of symptoms but did not totally eliminate them. I have had no side effects. Gradually became less effective

MVD Comments: Currently under a new doctors care, Dr Bill Mastrodimos in the San Diego facility, discussing the possibility of another MVD.
Barbara Northam

Diamond Bar, CA (USA)
Left
1993
Yes
No
Yes
1
04/24/08
Drs. Peter J. Jannetta and Raymond Sekula, Jr.
Pittsburgh, PA (USA)


Botox Comments: The first neurologist to inject me with Botox did not do it properly. My current neurologist is excellent, careful to inject me only where needed and I don't find the procedure terribly painful. However, I'm unable to use the left side of my mouth properly, drinking from a cup is sometimes difficult, and lately I find I cannot always form words properly.

MVD Comments: Update as of 05/04/08 - I am “Spasm Free”, I can hardly say it. My spasms began 14 years ago and 22 months ago I decided to try MVD surgery. During those months, I've battled my medical provider and my former insurance carrier, ultimately changing my insurance carrier so that I could come to Pittsburgh, to the Master. I'm so glad I traveled all the way from California to Pittsburgh, to Drs. Jannetta and Sekula. Everyone here, from Ann and the office personnel to the hospital staff has been so very kind and caring, and very professional. As for Drs. Jannetta & Sekula, words are inadequate to express my gratitude as well as that of my family. Now I can smile at my grandchildren.
Laura Nuessle

Lebanon, TN (USA)
Right
1997
Yes
No
Yes
1
10/27/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: HATED it.... my left eye would not shut and even after a year still tears and is easily irritated. My smile became very crooked and drooled...never again!!!

MVD Comments: Update as of 09/21/07 - For those of you out there still considering an MVD or still having spasms after surgery take heart and read on. It has been almost 2 years since my MVD with Dr. Jannetta and I am totally free of spasms. I have healed so well that I have none of the facial weakness that Dr Jannetta thought would remain. My smile is balanced and any "funny faces" I make, I am totally in control of !!!!!

The healing path was long. Six months after surgery the only improvement was that my HFS side eye no longer watered. Ten months after surgery I thought it was somewhat better but my eyelid kept sticking open whenever I blinked for a few seconds before it would close... THAT was annoying, but only lasted a couple days. But then one year after surgery the spasms seemed to just fade away and 18 months after the surgery I was ready to say I was "SPASM FREE". There were still occasional funny sensations but NO spasms or twitches. Now almost 2 years after surgery I am free of any spasms, and have no ill effects from the surgery. I thank Dr. Jannetta every day and am so grateful for this group for helping me find my way back to my smile.

Lorraine Nygren

Golden, British Columbia (Canada)
Right
2002
Yes
Yes
No





Botox Comments: Started on 11/21/06..
Ryan Odinak
Inactive Memb.
Fairfield, CT (USA)
Right
1986
Yes

Yes
1
11/07/02
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes


Jack O'Donnell

Sarasota, FL (USA)
Left
1997
Yes
No
Yes
2
01/23/03
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary's #1 & #2". (MVD #1 also with Dr. Jannetta 10/18/00 - SPASM FREE for 18 months and then spasms returned).

Nancy O'Donnell

Ringwood, NJ (USA)
Left
1997
Yes
Yes
No





Botox Comments: I only get a very small amount (3 shots)in the muscle under my eye (orbicularis oris). Somewhat effective for that area, but the rest of my face still spasms.
Kathy Odom

Conyers, GA (USA)
Left
1989
Yes
Yes
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Linda Okonski

San Diego, CA (USA)
Right
2004
Yes
No
Yes
1
03/26/08
Dr. John Alksne
La Jolla, CA (USA).
No

Botox Comments: In the early stages, the Botox helped, but now I'm starting to experience my eyelid drooping and it always feels like something is in my eye....starting to wonder about continuing injections.

MVD Comments: Update as of 06/19/08 – My MVD was on 03/26/08 with Dr. Alksne. I ended up with facial weakness and eye problems that resulted in Bell's Phenomenon. UCSD ran out of hospital beds and I spent 12 hours in recovery, it was pretty awful. When a bed opened up it was in ICU, which turned into a blessing. It was quiet, dark as I wanted it and I had individual care. For the surgery itself, my surgeon was surprised at the size of the blood vessel, which he cauterized. There were problems with the EMG machine. During surgery my 6th nerve was out of the surgeons field of vision and I ended up with another problem. I was treated by an Opthamologist while in the hospital and treatment continues continue to this day. The facial weakness has improved but there's still numbness around my mouth which makes it hard to eat properly, and liquid is of course through a straw. Before my surgery, I was so sure of my decision and I'm still not at a place of saying it was worth yet, just not yet. But I believe we are so tired of living with a condition that just wears us out physically and mentally. We end up living with HFS 24/7 and I'd had enough. I'm almost three months post-op and know I still need to be patient and give it more time, because time is all I have. I believe I could be spasm free but there's still numbness, so I can’t be sure. I can't drive right now, so I'm on disability from work.

Emine Oktem

Ankara (Turkey)
Right
2003
Yes
No
No





Botox Comments:
Evie Olszweski

Newark, DE (USA)
Right
1999
Yes
No
Yes
1
09/11/00
Dr. Yakov Koffman
Newark, DE (USA)
No

Botox Comments: did not like the effects of it.

MVD Comments:Still having facial and eye twitches every single day. Sometimes I feel like having another MVD but I am scared to death to do it.

Dasa Orszulikova

London (United Kingdom)
Left
2005
Yes
Yes
No





Botox Comments: Botox third treatment. Depending on the doctor administering, but have a relief with some unsightly effects. First Botox I had 6 injections eye, face, mouth worked very well no flattering of the eye lid and most strong spasms gone. Second Botox by different doctor 4 injections around my eye only very limited effect. Third treatment I had 6 injections eye, mouth much better but spasms still present. I have no side effects. It stings a little when administering but gone very quickly.
David Ortiz

Guaynabo (Puerto Rico)
Right
1998
Yes
No
Yes
1
05/11/05
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Paralyzed the right side of face. Mouth drooped; would bite my tongue constently.

MVD Comments: Update as of 6/1/05, I truly feel blessed knowing that HFSA members helped me through all this process. I will always be grateful.

Bill Osborn

Indianapolis, IN (USA)


Guaynabo (Puerto Rico)
Left/FONT>
2006
Yes
No
Yes
1
11/19/09
Dr. Aaron Cohen-Gadol-Gadol
Indianapolis, IN (USA)
Yes

I have used Botox for close to 3 years approximately every 4-6 months. Varying temporary help, but very painful injections and in one case paralized the left side of my mouth for a couple of months.

MVD Comments: Update as of 01/13/10 - While I do have a very slight and only occasional residual sensation in my left cheek, I consider myself 90-95% spasm free at this time.

Harry Otto

Jefferson City, MO (USA)
Left
1987
Yes
No
Yes
1
06/09/99
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: dumb idea.

MVD Comments: Surgery induced minor Bell's Palsy.

Christophe Oustalet

Montpellier (France)
Right
1998
Yes
No
Yes
1
10/10/06
Dr. Jacques Magnan
Marseilles (France)
Yes

Botox Comments: Efficient during 4 years

MVD Comments: Became spasm free 5 months after MVD.

Delores Overpeck

Avon, IN (USA)
Right
1991
Yes
No
Yes
1
04/11/01
Drs. Kassam & Horowitz
Pittsburgh, PA
Yes

Botox Comments: Blurred vision, R side facial weakness. I still had movement (it pulled my face)

Post MVD Conditions - I have a serious balance problems, and have had several falls, and many near serious falls I wasn't able to stand following surgery, and I now need to use a cane. Drs arn't sure but think that I had a stroke, or there is an accumulation of fluid.
Andi Owens

Atlanta, GA (USA)
Left
1999
Yes
No
Yes
1
11/21/01
Dr. Joseph C.T. Chen
San Diego, CA (USA)
No

Botox Comments: I felt they only prolonged the decision to have the surgery which I learned of from the opthamologist that administered the shots.

MVD Comments: Spasms have intensified in strength, frequency and duration. Would have a 2nd surgery in a second if I could afford it & get referral outside of Kaiser. (12/15/03)

Pauline Pace

Austin, TX (USA)
Left
1992
Yes
Yes
No





Botox Comments: Started botox 2yrs. ago. It worked great at first. The muscle has become stronger and more involved, sometimes going into my neck. This has made it very hard to get the right dosage with out causing facail drooping or looking paralyzed.
Mina Pacella
Inactive Memb.
New Castle, PA (USA)
Left
1999
Yes
No
Yes
1
04/29/09
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox injections caused me to look like I had a stroke. They only controlled the spasms for approxamately two months.

MVD Comments: Update as of 10/31/09 - It took me nine years to find a Doctor who would do this operation for me. It has completely changed my life for the better. I found Dr. Sekula on your website. Thank you for being there for me.

Bob Palmer

Langley , British Columbia (Canada)
Left
2002
Yes
No
Yes
1
01/29/08
Dr. Anthony Kaufmann
Winnipeg (Canada)
No

Botox Comments: Impractical due to the severity of the condition. For milder cases of the condition I think it would work very well.

MVD Comments: Update as of 03/17/08 - Still not spasm free but getting there. Great improvement so far.

Kathy Palmer
Inactive Memb.
Quincy, MA (USA)
Righr
2002
Yes
No
Yes
2
09/12/02
Dr. Peter J. Jannetta
Pittsburgh, PA
No

Botox Comments: Did not work - right lip droopy

MVD Comments: Going to have MVD #3 in Fall 2003 with Dr. Peter J. Jannetta. MVD #2 was also with Dr. Peter J. Jannetta, Allegheny General Hospital on 09/12/02, ans MVD #1 was with Dr. Fred G. Barker, Mass General Hospital, Boston, MA.

Tassos Panas

Furlong, PA (USA)
Right
1999
Yes
No
Yes
1
01/11/06
Dr. Amin Kassam
Pittsburgh, PA (USA)
No

Botox Comments: Botox worked well for me but it is not a permenent solution.

MVD Comments: Was spasm free for 1 year following MVD before they returned. For details, click here to see my "MVD Diary".

Nick Pappas
Inactive Memb.
Noblesville, IN (USA)
Left
2001
Yes
No
Yes
1
02/23/09
Dr. Aaron Cohen-Gadol
Indianapolis, IN (USA)
Yes

Botox Comments: No longer provided desired effect.

MVD Comments:

Eileen Pardini

Sun Lakes, AZ (USA)
Right
2004
Yes
No
Yes
1
09/03/08
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Effective for a couple years.Side effects became worse than the spasms. My eye would not blink and became very dry. I would bite my lip, sometimes the upper and sometimes the lower. Could not smile on that side of my face.

MVD Comments: Update as of 09/17/08 - I came out of surgery completely spasm free with no hearing loss.

Marty Paris

Edmonton, Alberta (Canada)
Left
1994
Yes
Yes
No





Botox Comments: Often helpful.
Steven Parsons

Brisbane (Australia)
Right
2003
Yes
Yes
No





Botox Comments: Botox - slows it down or stops it for a while.I believe it expediated the mouth twitching.
John Passalacqua

Charlotte, NC (USA)
Right
2008
Yes
No
No





Botox Comments: Botox Injections - did not work well - worked for about a week and then I would get a droopy eye lid for about 2 weeks and then the twitch would return.
Don Patterson

Jeffersonville, IN (USA)
Left
2002
Yes
No
Yes
1
07/18/06
Dr. Todd Vitaz
Louisville, KY (USA)
Yes

Botox Comments: Botox injections - 4 times over the past 2 years. The first and second time the twitching stopped for 3-4 months. The 3rd treatment didn't stop the twitching, so I went back and had the injections "boosted" with more botox. This resulted in drooping eyelid, mouth, etc. I most recently had botox injections 1 month ago. It may have calmed down the spasms a bit, but has not stopped them by any means.

MVD Comments: As of 07/31/06, still battling the dizziness and the full ear thing, but fortunately, NO SPASMS!

Andrew Peck

Chicago, IL (USA)
Right
2005
Yes
No
Yes
1
01/14/08
Dr. Gail Rosseau
Chicago, IL (USA)
Yes

Botox Comments: I tried Botox on 3 seperate occasions. It really didn't do anything but make my smile worse for a few months. I still kept getting the spasms so this did not solve anything.

MVD Comments: Update as of 01/21/07 - I just had my MVD a week ago. I still have some spasms but nothing like before the surgery. I was told that they should continue to diminish over the next few months and go away. I've had very little pain and my recovery is going great.

Rick Peterson

Ozark. MO (USA)
Left
2005
Yes
No
Yes/FONT>
1
08/07/09
Dr. Joshua Doweling
St Louis, MO (USA)
No

Botox Comments: Botox either left my face drooping or unable to close my eye and usually did not stop the spasms.

MVD Comments: Update as of 08/09/09 - The surgery went ok, unfortunately the spasms haven't decreased at all and the surgeon isn't sure if they will.

Susan Peterson
Inactive Memb.
West Fargo, ND (USA)
Left
1982
Yes
Yes
Yes
2
01/15/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Only worked first few times; experience 2-3 weeks of side effects and no marked improvement in spasms.

MVD Comments: Update as of 03/16/04 - Second surgery, January 15, 2004, and still not spasm-free. Complications from surgery were bacterial infections from the titanium mesh (2 wks after surgery); have had 2 surgeries since to clean out the infection and remove the titanium mesh (which was harboring the infection). I am presently on infusion therapy at home (twice a day). Spasm-free for 20 years after MVD #1 (1982), although I lost the hearing in my left ear completely from the first surgery.

Gilpatrick Peyton

Nocona, TX (USA)
Right
2006
Yes
No
Yes
1
12/18/08
Dr. Jonathon White
Dallas, TX (USA)
Yes

Botox Comments: The twitching subsided, but my eye drooped badly. I have also lost some mobility around my top lip which alters my smile.

MVD Comments: Update as of 02/11/09 – The surgery went very well. My recovery had been going well, but I had a stomach virus on Christmas Eve. A quick trip to the emergency room found me de-hydrated and ready for more recovery. However, on the ninth day post-op, the right (MVD) side of my face became paralyzed. The neurosurgeon covering for my doctor prescribed steroids, an anti-viral, and another MRI. The MRI did not show any abnormalities, and my eye now blinks and I can move my lips a little, so maybe this is part of a normal healing. I have read in some member diaries that they went through a temporary paralysis. I feel wonderful otherwise, only very few flutters around my eye (before the paralysis). I am now overjoyed to say that I have not had any spasms in weeks. The facial weakness has improved considerably as well. I praise God for His mercy and I thank Dr. White for his skills.

Denise Pfeiffer

Adelaide (Australia)
Left
1998
Yes
Yes
No





Botox Comments: Botox works better some treatments than other. My neurologist changes the amount she gives me and I can tell when she has reduced the amount - not as affective. Have had drooping mouth - eye dryness, lid drooping.
Paulo Pham
Inactive Memb.
Amarillo, TX (USA) Cumming, GA (USA)
Right
2000
Yes
No
Yes
1
04/07/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Droop eyelid.

MVD Comments:

Varghese Philips

Dubai (United Arab Emirates)
Left
2003
Yes
No
No





Botox Comments: Tried once , halted spasm for short while , but resulted in lop sided smile and permanent paralysis of left cheeek. Feel terrible in front of people, losing confidence and feeling isolated.
Wayne M. Phillips
Inactive Memb.
Granbury, TX (USA)
Left
1985
Yes
No
Yes
1
02/13/01
Dr. Richard Jackson
Dallas, TX
Yes

Botox Comments: Began Botox injections in 1992. Received every three months until August 2000. Injections always left face numb and sagging, results were always temporary.

Post MVD Conditions - Deafness & facial paralysis (HFS side), dizziness.
Cynthia Pineda

Frisco, TX (USA)
Left
1998
Yes
No
Yes
1
11/17/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: It's worked great for my eye, but now that it has progress to my mouth Botox doen't seem to work. I don't know if I should contine use of Botox or have surgery.

MVD Comments:

Yuda Pinkhof

Tel-Aviv (Israel)
Left
2004
Yes
No
Yes
1
02/06/08
Dr. Amin Kassam
UPMC, Pittsburgh, PA (USA)
Yes

Botox Comments: 1 round of Botox (10 units) around left eye. Believe I will stop it after reading the HFSA web pages.

MVD Comments: Update as of 10/07/09 – I am still spasm free, but, totally deaf in the MVD side with TONS of tinnitus. Balance problems are nearly gone. Still an issue when have to stand on one leg - e.g., when getting dressed. Hearing loss somehow also effects the other ear, perhaps it still improves (the overall hearing, not the dead ear which will never improve) very little. Considered BAHA but decided against it for now. Recommendation: Check the rate of complications, not only the rate of Spasm Free success when selecting the surgeon !! Let him go in twice or more, but let him be very careful and save your hearing, facial nerves etc.

For details, click here to see my "MVD Diary.

Jack Pitcher

Sussex, New Brunswick (Canada)
Right
1988
Yes
No
Yes
1
05/08/02
Dr. Anthony Kaufmann
Winnipeg, Canada.
Yes

Botox Comments: Some slight bruising, drooping mouth, bite my lip, speech slurred, injections painful. Makes it possible to sleep better therefore worth it.

MVD comments - As of 10/13/04, It has been 2 1/2 years since my MVD with Dr. Kaufmann in Winnipeg. After the surgery I was about 85% better. I expected any further improvement would be complete within a year. My condition continued to improve past this point. Now I can say that I am spasm free and have been for about two months. Never give up hope!
Priscilla Poh

(Singapore)
Right
1986
Yes
No
Yes
1
03/18/08

Yes

Botox Comments: Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update 03/27/08: Just returned from hospital yesterday after a 9-day stay, 8 of which were spent in ICU. Post operatively, I was initially well with improvement of the right facial spasm and hearing intact. However on 2nd day, I developed right nostril rhinorrhoea and had a lumbar drain insertion. The doctor opened up the surgical wound and repaired the CSF leak on 03/23/08. I think there was an active CSF leak from the dural closure line. This was repaired and resealed with wax. The CSF was clear from then on. My recovery was very well and on 4 days post repair, my lumbar drain was removed.

Craig Poland-Smith

London, England (United Kingdom)
Left
1999
Yes
No
Yes
1
02/10/04
Prof Hugh Coakham
Bristol, England (United Kingdom)
Yes

Botox Comments: A bit of relief for spasm-about 60%.

MVD Comments: I am reborn after 4-5 years of hell.I am still a little dizzy and weak with some headache,but am wonderfully, esctatically free of spasm.My original scans had apparently been misread; Professor Coakham said it was a very straightforward operation..
Charlotte Popham
Inactive Memb.
Baytown, TX (USA)
Left
2002
Yes
No
Yes
1
04/26/06
Dr. Richard L. Harper
Houston, TX (USA)
Yes

Botox Comments: I have worked with two different doctors; one was Dr. Janovich at Baylor Medical Center in Houston but he gave me so much botox that my face fell so far, I constantly cut my lip. My fault and his fault. I did not bring my medical records from Dr. Hoasjoe in Baytown to him and so by my descriptionh of how bad my eye was closing, he choose to just give me botox around the top and bottom of my eye only. It took over 9 months to get my smile back to normal. It was extremely hard for me to live with.

MVD Comments:

Ed Porras

Cerritos, CA (USA)
Left
1978
Yes
Yes
Yes
1
11/01/97


Redwood City, CA (USA)
No

Botox Comments: Botox working fine, have not considered doing MVD again. Stops spasms, drooping eyelids, and symetry off.

MVD Comments: Spasms returned 6 months later, slightly at first then full eye closure spasms by 9 months.

Kim Porter

Jacksonville, FL (USA)
Left
1995
Yes
No
Yes
2
04/19/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Offers immense relief from pain of constantly twitching facial and neck muscles, and allowed me a bit more relief at night. I am up to 17 different areas that receive injections and have suffered some serious temporary paralysis on the left side of my face, but it is worth it to me to get some relief.

MVD Comments: Update as of 04/19/09 - My 2nd MVD was a very easy surgery. Dr. Jannetta removed the last source of compression, a small threadlike vein, and could see no other reason for the spasms to continue, but they actually got worse for a bit through the middle months of 2007. Since June 2008 I’ve been spasm free. Having HFS since about 1995, it is still so new to be able to sleep any way I want without being awakened by spasms, or to be able to smile almost normally - it's just awesome! It is wonderful to be able to feel like a normal person again, and not have to constantly pull my face out of tonus! Believe me, people really looked at me when I was having spasms and tonus. I want to reassure those that didn't get immediate results from their MVD that it took more than a year for mine to resolve and at this time, it's almost like I never had them, thanks to Dr. Jannetta and Dr. Sekula - and this SUPER website!

Betty Pound
Inactive Memb.
Summerville, SC (USA)
Left
1997
Yes
No
Yes
2
05/06/02
Dr. Stephen Haines
Med. Univ. of South Carolina, Charleston, SC.
Yes

Botox Comments: Botox is no longer working.

MVD Comments: First MVD was April 16, 2002. The doctor found a vein and put in 4 pads but during the operation, the monitor stopped working so he stopped the operation. We were all hoping that I would be spasm free then, but I wasn't. Three weeks to the day of first surgery, had another MVD and I'm very happy to report that I am SPASM FREE. A very good feeling. A special thanks to my wonderful doctor for being extra careful and helping me get on with my life. He also threw in a freebe. For some reason my hearing on the left side has improved.

Jane Pow

Wishaw (United Kingdom)
Left
1998
Yes
Yes
Yes
1
02/13/04
Mr. T. Dunn
Glasgow (United Kingdom)
Yes

Botox Comments: Not particularly effective - has caused droopiness in both left eye, mouth and double vision.
Janice Powell

Winston-Salem, NC (USA)
Left
1992
Yes
No
Yes
1
12/16/09
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I tried Botox after finally referred to a neurologist. I had the twitching for 10 years before any doctor suggested the neurologist. Before that I had tried everything, including meditation, relaxation techniques, etc. all of which did not work. All the doctors said I was just stressed or anxious. Botox cleared up the twitching after a few visits and increasing the amount of injections. After that I went for treatments every few months and was twitch free for a couple of years. Then the twitching stopped for a couple of years on its own without the Botox and has now come back a couple of months ago. I was hoping it would go away on its own again, but has not. Am going back to the neurologist to resume Botox - have appointment in May 2007. Can't wait!

MVD Comments: Update as of 12/17/09 - The worst part for me has been all the anxiety and fear leading up to the surgery. I am presently spasm free! After surgery I had a pretty bad headache and nausea. The doctors and nurses have been great giving me pain and nausea medication so now I can keep my food down. I couldn't even take a few sips of water without it coming back up. But I’m so glad I had the surgery. Drs. Jannetta and Sekula did the surgery and they definitely know what they're doing. Nurse Ann Wilkinson was so nice and helpful. I am just so happy about it. I can deal with a little headache and nausea.

Deb Pratt

Middleborough, MA (USA)
Left
1988
Yes
Yes
No





Botox Comments: Works well for approximately 2 months but I still have pulling of my cheek and mouth.
Liza Price

Indianapolis , IN (USA)
Right
1998
Yes
Yes
No





Botox Comments: Works for a few weeks.
Carol Pritts

Decatur, IL (USA)
Right
2000
Yes
No
Yes
1
01/06/09
Dr. Oliver N. Dold
Decatur, IL (USA)
Yes

Botox Comments: Works for about 2 months and then wears off. It is very effective, I actually feel normal.

MVD Comments: Update as of 02/08/09 - I had 5 1/2 hours of surgery and I’ve been spasm free since then. I have some issues with hearing in my right ear. I don't know exactly how to explain it, I can hear, it's just not completely right. I also have trouble with swallowing but I was so blessed with no dizziness, nausea or really bad headaches. I am so very glad to be where I am and done. I went back to work last week and worked every other day. I still get tired easily. I am so very thankful I had the surgery done here, even though my surgeon hadn't done this surgery in 12 years and the guy that monitored the EMG while in surgery hadn't done this particular procedure. The doctor and the EMG guy had done their homework and were fully prepared.

Winifred Prudhomme
Inactive Memb.
Brookings, OR (USA)
Right
2001
Yes
No
Yes
1
01/16/04
Dr.John Alksne
La Jolla, CA (USA)
Yes

Botox Comments: I had Botox shots 2 or 3 under my right eye, one beside my nose and another on the cheek. They didn't seem to help and left the right side of my mouth kind of frozen. Couldn't raise my upper right side of my mouth.
Edward Pryor

Chicago, IL (USA)
Left
2003
Yes
Yes
No





Botox Comments: I've take Botox shots ever 3 months now for nearly 1 year. The positive effect seems to be diminishing.
Julio Puchuri

Lima (Peru)
Left
2003
Yes
Yes
No





Botox Comments:
Lucy Quek

(Singapore)
Right
2002
Yes
No
Yes
1
10/25/06
Dr. Kee Hang Ho
(Singapore)
Yes

Botox Comments: One Botox in 2002 by neurologist and stopped as wanted to try alternative treatment. In 2005 went back to Botox (3 times with a plastic surgeon), it helped with the spasm, but it caused the side of the face to droop, unable to smile. Sad looking face.

Click here to see my "Personal HFS History".

MVD Comments: Click here to see my "MVD Diary".

Conrado Quimbo

Cebu City (Philippines)
Left
2002
Yes
Yes
No





Botox Comments: good while it lasts.
Melanie Rafael

(Phillipines)
Right
1996
Yes
Yes
No





Botox Comments: Initally it lessened the attack of spasm. On the 3rd dose, there was more of facial asymmetry, drooping of the upper eyelid and the upper lip.
Kim Rainey

Katy, TX (USA)
Right
2001
Yes
No
Yes
1
06/04/09
Dr. Dong H. Kim
Houston, TX (USA)
Yes

Botox Comments: Stopped twitching...but cannot blink right eye so it is dry and hurts. Cannot smile out of right side of mouth.

MVD Comments: Update as of 06/16/09 - I had my surgery 12 days ago after suffering with HFS for 8 years. I cannot tell you how wonderful it is to have a normal, calm face again. I am a school teacher and it was also affecting my speech let alone how it changes your face...I tried at least 5 drugs, a year of Botox (with it's own devil devised side effects) all the while not considering surgery...way to radical for me........but boy do I wish I had done this years ago. I am "SPASM FREE"

Peggy Ramlogan

Richmond Hill , Ontario (Canada)
Left
2003
Yes
Yes
Yes
1
03/11/08
Dr. Anthony Kaufmann
Winnipeg (Canada)
No

Botox Comments: Botox is great intially and stopped the eye spasms however it paralyzed my mouth a bit and gave me a crooked smile.

MVD Comments: Update as of 03/16/08 - Dr. Kaufmann said my surgery went pretty well. I have been out of the hospital since the afternoon of 03/13. I only experienced a headache when I first woke up from surgery and now no more headaches. No real pain so far, just soreness around the incision and neck area which is expected. I've been very weak and tired since surgery but all is going well.

Walter Reabold

Allentown, PA (USA)
Left
1996
Yes
No
Yes
1
08/05/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Injections were very painful. It helped for awhile but never fully relieved the spasms.

MVD Comments: Since surgery, have strange taste in mouth.

Betty Redlaczyk
Inactive Memb.
Fall Creek, WI (USA)
Right
2000
Yes
No
Yes
1
02/06/08
Dr. Michael J. Link
Rochester, MN (USA)
Yes

Botox Comments: It helps but not completely. Makes mouth droop when used on cheek muscles.

MVD Comments: Update as of 02/14/08 - I had a rough surgery with dizziness and upset stomach and my hearing is affected on my right side. Dr Link was surprised that I couldn't hear as he said he didn't touch the ear nerve. Immediately after surgery I could hear out of the ear. Than the next day there wasn't anything, but now a week later some of the hearing is coming back. I still have fullness in my ear and know this all has to heal. I will get my staples out next Tuesday. Yes, I would go through it again, it is so great to have my face back.

Thelma Rees

Wiltshire, England (United Kingdom)
Left
1995
Yes
No
Yes
1
01/23/01
Prof Hugh Coakham
Bristol, England (United Kingdom)
Yes

Botox Comments: Not effective, dry eye, stroke like symtoms.

MVD Comments: Update as of 01/25/09 - I am still spasm free. I feel so blessed that the nightmare of hemifacial spasm seems so far away. I will always be grateful for the support the HFSA members gave to me.

Janis Reggio

Monrovia, MD (USA)
Left
2004
Yes
Yes
No





Botox Comments: Botox injections every three months - only lasts two months.
Pat Reimers

Lewisville, TX (USA)
Right
1992
Yes
No
Yes
1
12/17/09
Dr. Jonathan White
Dallas, TX (USA)
Yes

Botox Comments: Extreme drooping of eye and mouth on right side Have been going to a cosmetic Botox center, not much relief, but no drooping either.

MVD Comments: Update as of 01/14/10 - I woke up following surgery in ICU with “vibrations” in my right cheek, lots of nausea, but not much pain and no hearing issues at all,and spasm free. I drifted in and out the rest of the day/night really not noticing any spasms, but continued to feel the vibrations. On 12/18, although still a lot of nausea, small amount of pain, the vibrations went away, but I started having a few spasms. On 12/26, I started having a little bloody drainage from the incision that was getting increasingly tender. The next day I returned to the hospital and was taken back to surgery to reopen the incision, clean and drain it. Remained in the hospital another 4 days, leaving the night of 12/30 with a PICC line. My hearing is still good, my spasms are down to 1-3 small ones a day and I am thankful. As awful as this all sounds, I would do it again. It’s so weird to look in the mirror and smile and not see a distorted face.

Sian Reynolds

Prague (Czech Republic)
Left
2002
Yes
Yes
No





Botox Comments: I've used it once. Am considering a second dose now. Made my face look noticeably droopy for a month or more. But once that evened out, I was spasm free for many months.
Juliet Rhoden

Lithonia, GA (USA)
Right
1995
Yes
No
Yes
1
12/03/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Lost muscle control over right side of face. Arche eye brow, sagging cheek and down turned mouth. Botox has added to the disfigurement of my face.

Click here to see my "Personal HFS History".

MVD Comments: As of 12/14/03, hearing loss, vertigo, some facial paralysis, and had to have surgery on 12/10/03 to insert a gold weight in the eyelid.

Simon Riazi

London (United Kingdom)
Right
2006
Yes
No
No





Botox Comments: It was almost effective for 3-4 years, but because of serious side effects I stoped injections.
Marty Ridder

Abbotsford, British Columbia (Canada)
Right
1990/FONT>
Yes
No
Yes
1
07/10/06
Dr. Chris Honey
Vancouver, British Columbia, (Canada)
Yes

Botox Comments: Botox allowed me more control over the spasms with little if few side affects. Sometimes I had a bit more paralysis around my mouth than I wanted, but not too bad.

MVD Comments: Update as of 06/26/07 – Became “SPASM FREE” at 10 months post-op. It was a long road to recovery and I still have some balance issues but I believe that my Peripheral Neuropathy is the main cause of that. My hearing on the surgery side has not come back completely but enough that I can live with it.

Jean Riddle

Statesville, NC (USA)
Right
2000
Yes
No
Yes
1
11/09/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I have had botox injections approximately every six months for about 2 1/2 years. Some of the injections have been effective in partially stopping the spasms, some injections have offered very little relief. The side effects have been severe redness and watery eyes, itching and pain, drooping eyelid, unable to shut my eye with one injection, drooping facial features, and of course a lopsided smile.

MVD Comments: Update as of 11/09/07 - My MVD was on 11/09/06 with Dr. Jannetta and I been “SPASM FREE” since 11/18/06. I had no nausea, dizziness, problems with balance, headaches or hearing loss. My right eye does not droop and my smile is equal. I will be forever grateful to this wonderful group, my hfs family. Dr. Jannetta and his wonderful staff are my heros, so kind and compassionate. Dr. Jannetta is still in my prayers. I thank GOD for him and his knowledge daily. I would choose MVD again in a heartbeat!!!!

Paul Risitano

Brisbane, (Australia)
Left
2003
Yes
Yes
No





Botox Comments: Mostly effective but vision and facial distortion problems.
Jessy Ritter

Mackay (Australia)
Left
2004
Yes
Yes
No





Botox Comments: Update as of 02/03/09 - I started Botox about 10 weeks ago, besides the side effects, it’s great. First you have to try to live with HFS and now you have to try to live with Botox. The left side of my face is sort of numb, my smile is gone, and when I try to smile I look horrible. Going out for lunch or dinner is hilarious, I eat my burger while holding my upper lip up, otherwise I will bite my lip. I have to make sure I have a handkerchief, to my mouth, so I look neat. At night when I’m alone I cry, my face and smile is gone, that is the hardest part to deal with. But, at least I’m spasm free for a while, and that is worth it. My spasms around my mouth are coming back now; it was bound to happen that quickly for I did not get much the first time. The eye twitching is gone. I will go on with Botox, for it is better to live like this, than the spasms.
Marty Rivers

Detroit, MI (USA)
Right
1988
Yes
No
Yes
1
01/24/02
Dr. Ghaus Malik
Henry Ford Hospital, Detroit, MI
Yes

Botox Comments: Had maximum allowable dosage. It caused facial droopiness and drooling but it worked at first.

MVD Comments: For details, click here to see my "MVD Diary.

Deannie Robbins
Inactive Memb.
Hopewell, VA (USA)
Left
2000
Yes
No
Yes
1
09/09/02
Dr. K. Singh Sahni
Richmond, VA (USA)
Yes

Botox Comments: Click here to see my "Personal Botox Experiences".
Pat Robbins

Goole (United Kingdom)
Left
2007
Yes
No
No





Botox Comments: Have only just had 1st treatment but it showed no improvement and has caused drooping of eyelid and mouth. As Botox doesn't appear effective will have to consider surgery.
Michael Roberts

Ipswich (United Kingdom)
Right
1993
Yes
Yes
No





Botox Comments: Ok but face drooping but prevents the twitch.
Chris Robinson

Toowoomba (Australia)
Both
1984
Yes
Yes
No





Botox Comments:
Francois Robinson

Germiston (South Africa)
Left
2003
Yes
No
Yes
2
10/29/07
Dr. J. du Plessis
Pretoria (South Africa)
No

Botox Comments: Started with 1st injection of Botox on 01/19/06. After only 5 days about 50% reduction of intensity of spasms and 70% on amount of spasm in every hour. 63 days later and the spasms are back in full swing. It even feel sometimes a bit intense as before the botox injection. Have a appointment with the neurosurgeon the 28th march 2006.

MVD Comments: Update as of 12/10/07 - MVD # 2 was quite difficult with a lot of complications. The outcome of the surgery seems to be successful, currently no Spasms, but it seems that I lost the hearing in the left side.(MVD #1 also with Dr. du Plessis on 04/03/06, was spasm free for one year after MVD #1)

For details about my MVD #1, click here to see my "MVD Diary #1".

Silme Rodrigues

Caldas Novas (Brazil)
Left
2000
Yes
No
Yes
1
08/07/07
Dr Luis Fernando
Goiania, (Brazil)
Yes

Botox Comments: I tried 4 times,but the last time it didn't work well.

MVD Comments: Update as of 08/23/07 - I had my MVD on 08/07/07 (Tuesday) and I just can’t believe how fast and well I recovered. It began at 8:15 AM and at 12:15 PM I was back, “SPASM FREE” and no pain at all, just a little nausea and with a noise that seems like a lot of water inside the left ear. On Thursday, 08/09/07, I left the hospital and stayed at my son’s home until the next Tuesday, 08/14/07. Now I am home, feeling pretty well, very happy with the changes on my face. Looks like I am younger but especially happy with the chance of living more and with a calmer face. My doctor said there was no problem during the surgery and they filmed it.

Elaine Roedell

Boca Raton, FL (USA)
Right
2004
Yes
No
Yes
1
08/18/08
Dr. Chandranath Sen
New York, NY (USA)
Yes

Botox Comments: Botox Injections, which did paralyze the right side of my face, but when I smiled, I looked as if I were a stroke victim.

MVD Comments: Update as of 10/29/08 - No complications. I have been spasm free since I came out of surgery.

Patricia Rose

Albany, NY (USA)
Right
2000
Yes
No
No





Botox Comments: Made my face droop, started to drool out of the right side of my mouth. right side of the face was starting to look different that the left side of the face.
John Rossi

Ocean Springs, MS (USA)
Right
1995
Yes
Yes
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Laurie Rothfuss

Lafayette, CA (USA)
Right
2003
Yes
No
Yes/FONT>
1
07/29/08
Dr. Brian Andrews
San Francisco, CA (USA)
Yes

Botox Comments: The day after my first round, there was no twitching. I thought this was the answer! The next day, my entire face was sagging and I couldn't close my right eye. Six months later, I saw a different neurologist and have received three treatments. She used much less botox and did not inject eyelids. I was injected along the outside corner of my eye, between my eyebrows, above my eyebrow, and near the corner of my mouth. The constant eyetwitching stops for about 1 month, but my smile disappeared. I look freakish when I do smile. My last treatment was 11/2007 and I don't think I will try this again.

MVD Comments:

Shahin Rouhani

Jacksonville, FL (USA)
Right
1993
Yes

Yes
1
08/15/05
Dr. Robert E. Wharen
Jacksonville, FL (USA)
Yes

MVD Comments:
Robin Row

Enid, OK (USA)
Right

Yes
No
Yes
1
01/29/09
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Had 50 units on 12/17/2007, but did not help - they repeated on 12/20/2007 and made it "tolerable", but still twitching and returning to same level as pre-injection.

MVD Comments: Update as of 02/03/09 – I woke up “spasm free” and have not really had any pain except for a very sore throat and swallowing difficulty. Two snack packs of jello and broth are all I have been able to consume..maybe I will lose some weight. When I think about how the "demon" is gone I just want to cry with joy. The Doctors said I had a very difficult surgery and they had to lift and pack 5 areas. My HFS started in the cheek so we knew it was atypical. I would do it again in a second if it was necessary. Thanks again to all of you who have helped me through this.

Judy Rushlow

Baton Rouge, LA (USA)
Right
2001
Yes
No
No





Botox Comments: It was a horrible experience.
Ruth Saavedra

Albuquerque, NM (USA)
Right
1995
Yes
No
Yes
1
06/23/05
Dr. Kenneth F. Casey
Pittsburgh, PA (USA)
Yes

Botox Comments: This was scary, I couldn't close my right eye and I could't move the right side of my face at all for about a month. I received the injections early in 1999 and I still can't move the right side of my mouth very well. I have a lopsided smile.
Michiko Sakimotossi

Long Beach, CA (USA)
Left
1994
Yes
No
Yes
1
04/20/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Distortion: left & right sides of face did not match.

MVD Comments: As of 07/18/07 - My spasms were, I'd say, 90% gone for about 9 mos., when suddenly they came back with a fury. I could still drive, but had difficulty reading (I could do neither before the surgery). They stayed like that for about a week, then subsided over the next couple of weeks. I've been about 80% better since -- I can feel spasms, but my family says they can't see them. While I can't say I'm 100% spasm-free, I can say I have my life back (reading & driving at night); I'm thrilled to be back facing the world-- without the tinted glasses!

Nancy Salantri
Inactive Memb.
Huntington Beach, CA (USA)
Right
1999
Yes
No
Yes
1
11/16/04>
Dr. Mark E. Linskey
Orange, CA (USA)
Yes

Botox Comments: I wish I would have stopped Botox sooner or never started it. It seemed like a band-aid to the problem and you have to wait too long to have to get surgery.

MVD Comments:
Tammy Salcedo

Placerville, CA (USA)
Left
2003
Yes
Yes
No





Botox Comments: Effect lasted 30 days.
Sandy Sanders

Manchester, MD (USA)
Right
2000
Yes
No
Yes
2
02/14/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Terrible experience. A friend that had not seen me in several years thought I had had a stroke. After the first initial treatment the spasms seemed less intense. After that though the treatment did not help me and I could not bear the way I looked.

MVD Comments: Update as of 02/25/08 - I'm happy to report that I have been "SPASM FREE" since I awoke from surgery. I am almost afraid to say it for fear that they will return. Thank you to everyone for your support. I would not have found Dr. Jannetta and Dr. Sekula without this website. (MVD #1 with Dr. Robert Rosenwasser on 08/15/05)
Ray Sauder

Kitchener, Ontario (Canada)
Left
2001
Yes
No
Yes
1
004/13/06
Dr. Gary Ferguson
London, Ontario (Canada)
No

Botox Comments: Botox done 4 times - total waste of time and money - vowed never to do it again after 2nd time but another wonderful doctor convinced me to let him try with no charge. He used very small doses in slightly different spots and I was actually very pleased with the results for one month. With weakening of the face muscles becoming obvious, I couldn't see 10 or 12 Botox injections a year being a good option.

MVD Comments: I lost my voice and now, 5 months later, it is only very slightly better. Worse, my spasms never really went away - maybe 50% better.

Greg Sawyer

Detroit, MI (USA)
Left
2003
Yes
No
Yes
1
04/09/09
Dr. Kenneth F. Casey
Detroit Receiving Hospital, Detroit, MI (USA)
Yes

Botox Comments: First treatment was taken in conjunction with med therapy. Seemed to have an extended effect, but didn't really eliminate all HFS symptoms. Second treatment after stopping meds for over a year was more successful, but only lasted 4 months. Awaiting another treatment as of 09/08. 04/09 New insurance & new administering Physician, less successfull results, ready for the next level of treatment.

MVD Comments: Update as of 11/17/09 - Surgery went very well, way better than anticipated. Dr. Casey said he got 95% of the spasms as indicated under interoperative monitoring. I have had no spasms since the surgery and I find it hard to believe how calm the affected side of my face feels compared to before surgery. It truly is amazing how your outlook on life is restored after a successful MVD. Of all the options I had to try over the last 5 years, MVD surgery was the most worthwhile approach for my case. I can't believe I can now say this. But I'd do it again without hesitation, if I had to. I was fortunate to be located where I could take advantage of Dr. Kenneth Casey's expertise. He is definitely a top resource for this procedure in my book.

Sharon Scherer

(Switzerland)
Left
2004
Yes
No
Yes
1
07/31/08
Prof. Drs. med H. Bertalanffy & R. Reisch
Zurich (Switzerland)
Yes

Botox Comments: 1 botox - 5 months, 2 botox - 3 months, 3 botox - 2 months. Face became artificial and hard.

MVD Comments: Headache, Tinnitus, taste bud blend, Earache & Nausea (2 days).

MVD Comments: For details, click here to see my "MVD Diary.

Louann Schiavone

Port Jervis, NY (USA)
Right
2002
Yes
No
No



Pittsburgh, PA (USA)


Botox Comments: botox three years, only worked at onset of use.

MVD Comments: Was scheduled for MVD on 05/20/09 with Dr. Peter J. Jannetta, Allegheny General Hospital, Pittsburgh, PA (USA) but decided to cancel the surgery.

Marge Schinnerer

Bethesda, MD (USA)
Left
2002
Yes
No
Yes
1
02/27/07
Dr. Amin Kassam
Pittsburgh, PA (USA).
Yes

Botox Comments: Injections work more in beginning for about 60 days, shortening to 30 later. Helped, but injections required were numerous, painful, and to both sides of the face in an attempt to standardize appearance of smile (palsy)

MVD Comments:

Rose Marie Schmidt

Surrey, British Columbia (Canada)
Left
1994
Yes
No
Yes
1
06/26/07
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Botox helps control eye spasms for about 3 months; I don't "wink" or have bad spasms until it starts wearing off; but I find spasms in the left mouth area harder to control even after botox shots. My mouth still pulls upward on left side; Side effects are mainly my left mouth area when I smile, droops from Botox shots started in 2000. Update June 3, 2007: Since going off botox in December/06 in preparation for MVD surgery June 26/07, my left eye often closes for 10-15 seconds, making driving, reading, watching TV a bit difficult; and my mouth still pulls upward when eye is spasming. Will be good to be rid of these symptoms.

MVD Comments: Update as of 06/28/08 - I am very pleased to say that I no longer have any spasms or other symptoms of HFS. I was spasm free for 3 months from September until December 2007 when they started to return. By May 2008 they had again decreased and now I can say I am again enjoying being “SPASM FREE”. To those who have had surgery and are not yet spasm free, I would like to say - don't give up; have faith and think positively that you will become spasm free even if it takes more time than you think it should.

Click here to see my "Personal HFS History".

Carol Schneider

Hayward, WI (USA)
Left
1997
Yes
No
Yes
1
09/13/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: I don't think it helps me that much; makes my face even more distorted looking; but better than nothing.

MVD Comments: Update as of 11/03/08 - I noticed great improvement of my spasms right after surgery, but by about 3 months post-op, they were back in full force. At first I thought I would never have surgery again, but am changing my mind day by day.

Frank Schoolmaster

Walnut Creek, CA (USA)
Right
1988
Yes
No
No





Botox Comments: It took slightly more than one year of recurrent treatments to find the right site and dosage to reduce frequency and severity of HFS. Once found, Botox treatment was very successful in controlling HFS, with recurrences beginning two months after treatment.
Peg Schuster

Cinnaminson, NJ (USA)
Left
1991
Yes
No
Yes
1
07/07/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: works sometimes limited time effectiveness.

MVD Comments: It took six months following surgery to become spasm free.

Denise Scott

Stratford, CT (USA)
Right
2000
Yes
Yes
No





Botox Comments: Botox - which seems to work somewhat, not 100%, maybe 80% for a short time but not long enough to make it between treatments. Side effects- crooked smile- not sure if it is the Botox probably the HFS.
Jean Scott

Mishawaka, IN (USA)
Left
1995
Yes
Yes
No





Botox Comments: Low dose administered below left eye improves my reading ability and makes spasms and twitches tolerable.
Patti Scott

Sabina, OH (USA)
Left
2001
Yes
No
Yes
1
03/17/06
Dr John M. Tew
Cincinnati, OH (USA)
Yes

Botox Comments: Have had botox injections two times, the first injections were 20 units which did relieve the spasms but had the residual side effects of the drooping mouth, the second injection was by another neurologist who injected 50 units with no effective results except the same residual side effects of drooling, she suggested a third time and increasing the dose to 100 units, I declined due to the fear of more severe side effects with such a large dose.

MVD Comments: As of 04/29/06, still suffering from some dizziness, lightheadedness, nausea and I'm unable to make quick or jerky head movements without feeling posturally unstable. I do have some hearing loss on the operative side (left) accompanied with a "humming" sound.

Bob Scrudato

Newton, NJ (USA)
Right
2001
Yes
No
Yes
2
04/02/07
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

Botox Comments: Botox is the only treatment that offered some relief. However, it has caused my face to droop on the right side and my right eye is rarely fully open. Sometimes it causes me to slur my speech. I haven't had a treatment in over three months and the eye twitching is becomming unbearable. However, I am giving serious consideration to the surgery and I know that they will not operate if you have had Botox within nine months.

MVD Comments: Update as of 08/24/07 - This second surgery was very tough on me. However, It seems like it was all worthwhile. I haven't had a hint of a spasm all month. So I am officially "SPASM-FREE". I still have some issues with my voice, but outside of that I am fully recovered. I feel like I have a new lease on life and I can't thank the HFSA enough for this site. Without all of our members, I could have never gone through with the surgeries. Thanks again and GOD BLESS. (MVD #1 on 11/25/05 with Dr. Ronald Brisman) For details about my MVD's, click here to see my "MVD Diary's #1 & #2".

John Scully

Matawan, NJ (USA)
Left
2000
Yes
Yes
No





MVD Comments: Scheduled for MVD Consultation on 10/25/06 with Dr. Eric Zager, University of Pennsylvania Hospital, Philadelphia, PA (USA)
Nurcin Sebuk

Istanbul (Turkey)
Right
2008
Yes
No
No





Botox Comments: It sopped the twitching for some months but i couldnt laugh any more with the right side.
Harriet Selfridge
Inactive Memb.
Rosemont, PA (USA)
Right
1999
Yes
No
Yes
1
11/21/05
Dr. Eric Zager
Philadelphia, PA (USA)
Yes

Botox Comments: Helped in the beginning -now not so much. Eye dryness is a real problem.

MVD Comments:

John Sepanic

Urbandale, IA (USA)
Left
2007
Yes
Yes
No





Botox Comments: Botox works somewhat, definitely not a cure all. I don't like the way it alters my face, others may not notice but when I look in the mirror or smile I can see a difference.
Billie Jo Sepulvado

Zwolle, LA (USA)
Right
1984
Yes
No
Yes
1
07/06/03
Dr. Anil Nanda
Shreveport, LA (USA)
Yes

Botox Comments: I began botox injections around 1998. I was getting injections every 3 months. The shots never bothered me, but the bruised eye often lasted 1 1/2 - 2 weeks & then the droop started. My cheek was so numb that I chewed the inside raw. I looked worse with the botox than I did with the spasms, but the muscles were at least relaxed & I was more comfortable and got better rest. I finally gave up the botox in 2002. I had to choose between the worst of two evils (spasms or droop), added in the time off from work & gas to drive 80 miles to my doctor and the cost of the botox & chose to go with the spasms.

MVD Comments: For details, click here to see my "MVD Diary".

Pat Sexton

Peabody, MA (USA)
Left
2005
Yes
Yes
No





Botox Comments: dry eye, drooping, some speech difficulty. Short period of effectiveness of the twitch.
Muhammad Shami

Jaleeb Al Shoukh (Kuwait)
Right
1996
Yes
Yes
No





Botox Comments:
Burt Shand

Fredericksburg VA (USA)
Left
2006
Yes
Yes
No





Botox Comments: I may get some relief, or I may just get to a few weeks after injections in which stress is down, after CD for 3 and 1/2 years still trying to figure out what, when, and why I have a few good days.
Terry Shell

Santa Rosa, CA (USA)
Right
2001
Yes
Yes
Yes
1
08/02/04
Dr. Jeffrey Thomas
San Francisco, CA (USA)
Yes>

Botox Comments: I had an MRI, and was referred by my neurologist to an opthamologist who has a lot of experience with Botox injections. He had the experience to start with half-doses (2.5 mg instead of 5). Botox is very effective, BUT I get severe drooping in left eyelid; so much so that I experience depression and avoid going out in public. I also experience double vision and dryness in my left eye.

MVD Comments:
Robert Shepard

Thunder Bay, Ontario (Canada)
Right
1985
Yes
Yes
No





Botox Comments: Was effective at first, had drooping eyelid and corner of mouth.
Jill Shimabukuro

Honolulu, HI (USA)
Right
1997
Yes
Yes
No





Botox Comments: Works for a couple of months although there are still a few twitches. slight facial droop is a negative.
Julie Shinners

Toowoomba (Australia)
Left
1997
Yes
Yes
No





Click here to see my "Personal Botox Experiences".
Susan Shipman

Allentown, PA (USA)
Left
1991
Yes
No
Yes
1
07/06/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA).
Yes

Botox Comments: I have been receiving Botox injections every 3 months for the past few years. This has given me some relief, especially at first, but it is not working as well as before. Also, I will not let the doctor give me an injection by my nose for the cheek and mouth because it makes my whole left side of my mouth droop.

MVD Comments:

Janet Shoudy
Inactive Memb.
Mill Creek, WA (USA)
Left
1999
Yes
No
Yes
1
07/08/04
Dr. Amin Kassam
Pittsburgh, PA (USA)
No

Botox Comments: No side effects, but as time went on, much less effective.

MVD Comments:
Brad Shupe

Greeneville, TN (USA)
Right
2001
Yes
Yes
No





Botox Comments: Botox tried for the first time 12/10/04. It helps alot but I still get some contractions around the eye. It feels like it is wearing off already.
Lana Silke

Hartland, WI (USA)
Right
1988
Yes
Yes
No





Botox Comments: Botox was a lifesaver for me. Without it, I couldn't have continued teaching. However, Botox injections have become less effective since spasms are now in the lower part of my face. However, there is still some relief from the upper face injections.
Colleen Sine
Inactive Memb.
Glen Allen, VA (USA)
Left
1994
Yes
No
Yes
1
10/02/00
Dr. K. Singh Sahni
Richmond, VA
Yes


Linda Six

Boise, ID (USA)
Right
2001
Yes

No





Botox Comments: Tried it once so far and it calmed the spasms.
Adam Sloane

Melbourne (Australia)
Right
1996
Yes
No
Yes
1
06/08/05
Mr Damien Tange
Parkville (Australia).
No

Botox Comments: Slight drooping of right side of face and eye. A band-aid treatment which never helped treat the cause of the problem.

MVD Comments:

Derek Smith

Hurstpierpoint (United Kingdom)
Right
2003
Yes
No
Yes
1
01/16/07
Prof. Hugh Coakham
Bristol, England (United Kingdom)
Yes

Botox Comments: Ceases to be effective.

MVD Comments:

Karen Smith

Buffalo Grove, IL (USA)
Right
1999
Yes
Yes
No





Botox Comments: Botox worked after 3 neuro docs. Have lasted 6 months in the past but now it's back after only 3 months. botox works for 3 - 6 months. Side effects - dry eye and for 2 weeks right eye will not close. I have an eye patch and tape. A really inconvenience but for a few months of normalcy, I'll take it.
Rex Smith

Coalville, UT (USA)
Right
2006
Yes
No
Yes
1
06/15/09
Dr. Ronald I. Apfelbaum
Salt Lake City, Utah (USA)
Yes

Botox Comments: I have had 3 Botox shots in the past year. I don't like it's effect, but it is better than not having it. The last shot was not as effective as the first.

MVD Comments: Update as of 08/15/09 - I had the operation on 06/15/09 and have had at terrible time. I got a staff infection and they had to open it again and clean it out. Then I had terrible headaches and problems with equilibrium. Maybe the worst part is that I have terrible weakness.-----I haven’t been to work for 8 weeks. The spasm has cleared up but the results are worse. If I had it to do again, I wouldn’t do it.

Phil Snider

Phoenix, AZ (USA)
Right
2002
Yes
Yes
No





Botox Comments: Currently undergoing Botox treatments that are becoming less and less effective. Limiting use of my facial expressions.
Jill Sobol

Forsyth, IL (USA)
Left
1999
Yes
No
Yes
1
12/05/07
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Effective but not a fine science. Too much, not enough, inability to blink, dry eyes, uncomfortable face needles etc.

MVD Comments: Update as of 01/03/08 – After closing up, the monitoring indicated that lateral spread had returned, so they opened me up again and continued decompressions. For several weeks following surgery the spasms remained and I developed post-surgery Bells Palsy, which is now greatly improved since the onset I am now pleased to report that at this time I am spasm free.

Yogesh Somasundaram

Phoenix, AZ (USA)
Left
2007
Yes
No
Yes
1
10/20/09
Dr. Robert F. Spetzler
Phoenix, AZ (USA) Pittsburgh, PA (USA)
No

Botox Comments: Was effective 60 to 70% for the first two sittings. But I got Cardiotoxic symptoms after the third sitting but the reason for this effect.

MVD Comments: Update as of 10/25/09 - Day 5 post-op I'm getting a few twitches and spasms on my left side.

Chettra Sophean

Phnom Penh (Cambodia)
Right
2004
Yes
No
No





Botox Comments: It's condition was better.
Gail Souders

Mt. Calm, TX (USA)
Right
2002
Yes
No
Yes
1
06/08/05
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Have had 7 rounds of injections. The last 2 have not worked and I will not get anymore.

MVD Comments:

Dorothy Spacil

Summerville , SC (USA)
Right
1998
Yes
No
Yes
1
06/21/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Did not like the way my face looked after Botox.

MVD Comments: Update as of 08/18/07 - I had no problems with my recovery other than the disappointment of still having the spasms. I am told it is still possible that they will go away. It has been 8 weeks and the spasms are still going strong.

Karen Spicola
Inactive Memb.
Pueblo, CO (USA)
Left
1984
Yes
No
Yes
1
05/10/01
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
Yes

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary.

Chris Stafford
Inactive Memb.
Brisbane (Australia)
Left
2004
Yes
No
Yes
1
03/13/07
Dr. Francis Tomlinson
Brisbane (Australia)
Yes

Botox Comments: First time worked for a couple of months whilst spasm was still minor and contained to just around my eye. Second time did nothing at all.

MVD Comments: Click here to see my "MVD Diary".

Tracey Stangel

Assiniboia, Saskatchewan (Canada)
Left
2003
Yes
No
Yes
2
11/30/05
Dr. Anthony Kaufmann
Winnipeg (Canada)
Yes

Botox Comments: Only had one treatment and that was in August,04. Still having spasms, will be doubling dosage next one and having injections in facial muscles this time.

MVD Comments: For details, click here to see my "MVD Diary". (MVD #1 with Dr. Kaufmann on 10/22/04).

Suzie Stebbings

Launceston (Australia)
Left
2003
Yes
No
Yes
2
01/28/09
Mr. Andrew Hunn
Hobart, Tasmania (Australia)
No

Botox Comments: I hated it, the neddles hurt. My face felt fat, I dribbled worse, and had little bruises. I have used Botox for nearly 3 years.

MVD Comments: Update as of 10/15/09 – Had MVD #2 and was without spasms for the first five days following surgery, but then they started again. By the 8 day’s post-op, the spasms were getting just as bad as before the surgery. I have no hearing on the left side all I have is a motor ringing all the time and now I have clicking in the right ear and a few spasmas on that side too. I see other surgeon on the 11/05/09. (MVD #1 also with Mr Hunn on 07/17/08 and I have ringing in my ear all the time).

Kevin Stetson

Cincinnati, OH (USA)
Left
1992
Yes
No
No





Botox Comments: Tried botox 10 years ago. Didn't like all the injections around eye and mouth. While the spasms subsided, left corner of mouth drooped and non-working muscles.
Mike Stiffarm

Fort Wayne, IN (USA)
Left
1992
Yes
No
Yes
1
05/15/06
Dr. Michael B. Pritz
Indianapolis, IN (USA)
Yes

Botox Comments: Botox was extremely helpful but had some drawbacks.

MVD Comments:

Norma Stillwell

Hendersonville, NC (USA)
Right
1996
Yes
Yes
No






Bonnie Stinson

Richmond, VA (USA)
Left
1999
Yes

No






Pi-ling Stoever

Houston, TX (USA)
Left
2003
Yes
No
Yes
1
05/19/08
Dr. Richard L. Harper
Houston, TX (USA)
Yes

Botox Comments: Tried Botox twice and did not work.

MVD Comments: Update as of 06/10/08 - Still have minor headache four weeks after the surgery

Lily Sularso

So. Pasadena, CA (USA)
Left
1998
Yes
No
Yes
1
04/06/09
Dr. John Frazee
Westwood, CA (USA)
Yes

Botox Comments: Started Botox injection in May 2005. The third injection was performed in November 2005, but it has lost effectiveness in four weeks.

MVD Comments: Update as of 05/31/09 - I'm happy to say that I am spasm free. I lost left hearing up to three weeks after the surgery, now my hearing has improved by about 80%. I have slight dizziness and still feel easily tired. However I'm pretty much doing what I have been doing before the surgery. To all who contemplate MVD, GO for it. It took me several years to decide that I wanted this surgery, it took another 8 months getting off BOTOX and 1 1/2 years fighting with insurance for approval. After all it's all WORTH IT.
Meg Suzuki

Spanaway, WA (USA)
Left
2004/FONT>
Yes
No
Yes
1
12/21/07
Dr. Robert C. Rostomily
Seattle, WA (USA)
Yes

Botox Comments: 1st treatement dosage didn't do much. 4 weeks after 1st treatment I went back for more injections. After 2nd set of injections the spasms were still there but not as violent. 10 weeks after 2nd set of injections, the spasms were getting bad so I called to get in a little early. 3rd injections were like the 1st so I waited another 4 weeks and called to get in early again. got the 4th set of injections but not a as effective as the 2nd set of injections.

MVD Comments:

Gemma Sydney

Sydney (Australia)
Left
1995
Yes
No
Yes
1
07/14/04
Prof. Marcus Stoodley
Randwick, Sydney (Australia)
Yes

Botox Comments: Works well for eye muscles but not so well for cheek and mouth. Was good when spasms were mild. Side effects can be minimised by low doses and injections close to eyelid margin.

MVD Comments - Had a high resolution MRI prior to surgery which identified the offending vessel, a loop of PICA. This was found to be squashing my facial nerve at surgery.

Hilary Swanson

Marcola, OR (USA)
Left
2001
Yes
No
Yes
1
10/18/06
Dr. Kim Burchiel
Portland, OR (USA)
Yes

Botox Comments: I have had three different Botox injections around my left eye, making my face feel even "tighter." My facial expressions seemed more limited until the Botox cleared my system.

MVD Comments: Update as of 12/03/06 - Unfortunately, I had a CSF leak into my inner-ear immediately after surgery that went unnoticed until a week later and 100 miles away from the hospital, when I was leaking the CSF through my left nostril! I then underwent a second surgery (10/26/06) to repair the leak site and am now fine... and “SPASM FREE”! I still had spasms after the MVD. It wasn't until they went in and fixed the leak that my spasms stopped. I was so relieved! Besides dealing with some residual pain at the surgical site (the incision), I feel like a whole new person. I absolutely recommend MVD to anyone dealing with HFS. The feeling of "normalcy" goes unmatched!

Louis Talboom

Oosteind (Netherlands)
Left
2000
Yes
No
No





Botox Comments: Initially a success but after a few years I felt uncomfortable.
Joyce Talbot

Stoughton, MA (USA)
Left
1997
Yes
Yes
No





Botox Comments: it makes abig difference, but does not completely alleviate spasms. Also paralyzes the left side of my mouth making it impossible and awkward to smile.
Judy Tan

(Singapore)
Left
2001
Yes
No
No





Botox Comments: Started Botox treatment in Dec 2003. Spasm stopped but only for 3 months. Last Botox treatment was in Feb 2006. Felt discouraged that the effectiveness is only for 3 months. Side effect - mouth appears crooked and eye looks spastic.
Mohlee Tan

(Singapore)
Left
1997
Yes
No
Yes
1
03/25/08
Dr. John Thomas
(Singapore)
Yes

Botox Comments: Had Botox treatment between mid-2000 to end 2005 with some stoppages in between. It seemed to help initially but not when the twithing and spasm got stronger. Do not last long (about 1-2 months only) and got to keep increasing the dosage which caused eyelid to droop, face and lip paralysis. Also had bruises sometimes due to the injection.

MVD Comments: Update as of 04/25/08 - I am glad I had the MVD and am happy with the outcome (slight facial weakness and headache that are improving).
For details, click here to see my "MVD Diary.

Donna Tatman

Circleville, OH (USA)
Left
2003
Yes
No
Yes
1
03/17/05
Dr. Robert J. Gewirtz
Columbus,OH (USA)
No


Sandy Tavernier

Findlay, OH (USA)
Right
2000
Yes
No
Yes
1
08/09/07
Drs. Peter J. Jannetta & Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: One Botox injection - seemed to stop twitching around eye but not completely effective. No side effects.

MVD Comments: Update as of 08/14/07 - I am so happy and excited that I am “SPASM FREE”. I can’t fully express what special, wonderful doctors they are and what great care I received at Allegheny General. I had a rough couple of days, very sick and a bad headache, but by 2 days post-op, when I went to the hotel, I really was doing pretty well. I was eating by that night and off the pain medication by 3 days post-op, just taking Advil. We came home, a 5 hour drive, after my follow up appointment on day 4 post-op. I am very tired today, but other than that, I feel pretty good. Some pain in my ear, but headache is gone. Words can not express the feeling of a calm face, a wide eye, and a smile that is back, I am so thankful.

Mekete Tekle

Addis Ababa (Ethiopia)
Left
2000
Yes
No
No





Botox Comments: Botox improved the twitching of lip and eye lid after a month and a half, but it collapses my eyeball and eyelid for many months. Unfortunately, Botox is not available here in Ethiopia.
Beverly Terry

San Diego, CA (USA)
Right
1968
Yes
No
Yes
2
07/07/04
Dr. Roberto A. Cueva
San Diego, CA (USA)
Yes

Botox Comments: My first injection was an overdose resulting in major double vision (horizontal) for about two weeks so that I could not drive. The next 4 weeks I drove with one eye closed. I went through 4 more treatments with droopy eys, closed eyr, dry eye, droopy mouth, inability to drink out of a glass, the total look of a person with a stroke. Spasms always reoccured within 1 month.

MVD Comments: For details, click here to see my "MVD Diary". (MVD #1 with Dr. Thomas Waltz - 11/23/83, I was spasm free for about a year and then had a bad reoccurance that did go away).

Hyon Terry
Former Memb.
El Paso, TX (USA)
Right
2000
Yes
No
Yes
2
09/15/06
Dr. David Masel
El Paso, TX (USA)
Yes

Botox Comments: The treatments helped but only masked the problem. Had botox treatments for three years and the last few treatments only lasted for about 30 days and caused my mouth to droop on the affected side.

MVD Comments: Update as of 11/05/06 - Immediately after surgery and at the present time I have palsey on the right side of my face and can't hear out of my right ear. The right side of my mouth droops and I do not have any control over the right side of my face. (MVD #1 on 04/28/04 with Dr. Samuel S. Lyness, William Beaumont Army Medical Center, El Paso, TX (USA))

Sri Thao

Inver Grove Heights, MN (USA)
Left
1998
Yes
No
Yes
1
12/06/02
Dr. Eric S Nussbaum
Minneapolis, MN (USA)
Yes

Botox Comments: Would prob not use again because it made me weak on one side and dropping was very visible. It didn't even help anyways because by the time I started using it I had severe HFS so I basically took it for nothing.

MVD Comments: I had an excellent doctor! He is brilliant. I have hearing loss but it's a sacrifice I was willing to take at that point.

Jeanie Thomas

Atlanta, GA (USA)
Right
1987
Yes
No
Yes
1
01/10/08
Dr. Peter J. Jannetta)
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox every 3-4 months. Twitching goes away but my face (mouth, smile) is first limp and later contorted. I have come to think this may be caused by the treatment (botox) and that it may not part of the underlying problem, but I don't know.

MVD Comments: Update as of 01/16/08 - When I woke up from MVD I tried to smile and it worked! Symmetrically! I left the hospital Friday. No pain, only soreness...and that is fading. We checked back with Drs. Jannetta & Sekula on Monday and then began our drive home to Atlanta GA, arriving Tuesday. I have no spasms, a regular smile and a very grateful and happy heart. I cannot measure the value of this group and the information and encouragement you all provided. Thanks to everyone...

For details, click here to see my "MVD Diary".

Terry Thomas

Chandler, AZ (USA)
Left
1999
Yes
Yes
Yes
1
03/17/04
Dr. Amin Kassam
Pittsburgh, PA (USA).
Yes

Botox Comments: After 4 years of usage, it seems effect is gradually decreasing.

MVD Comments:
Tom Thompson

Naples, FL (USA)
Right
2002
Yes
Yes
No





Botox Comments: Too early to tell (5/30/03)
Sherry Thornton

Carlisle, PA (USA)
Right
1994
Yes
No
Yes
1
09/14/98
Dr. Stephen Powers
Hershey, PA (USA)
Yes

Botox Comments: Botox injections didn't help much.

MVD Comments: Having the operation is the best decision I ever made. Recovery takes a while but it is worth it.

Mary Thurmond

Corpus Christi, TX (USA)
Right
1996
Yes
No
Yes
2
04/17/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Only three times and in two or three locations with minimal doses. Always felt the twitching came back stronger when the Botox wore off. Once the upper eye lid would not close without forcing it closed.

MVD Comments: For details, click here to see my "MVD Diary. (MVD #1 was on 10/11/01 also with Dr. Jannetta - spasms were reduced but not totally eliminated after MVD #1).

Jennifer Todd

McHenry, IL (USA)
Left
2005
Yes
Yes
No





Botox Comments: spasms decreased, but left eye didn't close completely for approx 2 months.
Edgar Torres

Lake Worth, FL (USA)
Right
1994
Yes
No
No





Botox Comments: I have taken Botox injections. The effects of the shots last as long as three months. Too much would droop down my face, not enough would keep it spasming. I stopped taking the shots 2 years ago.
Grant Towers
Inactive Memb.
Worthing, (United Kingdom)
Right
1999
Yes
No
Yes
1
03/08/04
Prof. Hugh Coakham
Bristol, England (United Kingdom)
Yes

Botox Comments: Tried Botox in 2001 for 18 months. I could still feel that pulling on the side of my face but this could not be seen. I did not like the frozen look of the Botox and not being able to close my eye after injections. Stopped 8 months ago to try and search for a more permanant solution. Now can see face movement clearly and pulling from the corner of mouth to the eye. This is a most of the day occurance.
Renee Toy

Dallas, TX (USA)
Right
1999
Yes
No
Yes
1
01/30/03
Dr. Thomas Kopitnik
Dallas, TX (USA)
Yes

Botox Comments: Received first injections 7/30/03, but no results

MVD Comments: Lost some hearing in my right ear, damage to vestibular nerve causes diziness and vertigo, and still affected by severe spasms.

Susan Trask

Wichita, KS (USA)
Right
2002
Yes
No
Yes
1
06/20/05
Dr. John Gorecki
Wichita KS (USA)
Yes

Botox Comments: Eventually had relief from spasms after the first treatment, January 2002, however, eyes became intolerably painful. I saw an eye doctor, who plugged the tear duct which was a relief until over-tearing started occurring. Two shot had been administered to each eyelid (upper and lower), and a couple on the cheek the first time. Dosage was increased in April, 2002, and this time only the lower eyelid, cheeck, and chin rec'd the shots. My cheek felt exceptionally numb this time, and numbness continues--worse, the spasms never totally stopped, and though, my eye was not as wide opened, the pain again became unbearable. Only in the last week, July, 2002, have I experienced relief.
Susan Trask

Wichita, KS (USA)
Right

Yes
No
No





Botox Comments: Received first injections 7/30/03, but no results.
Tram Trinh

Wayne, PA (USA)
Right
2000
Yes
No
No





Botox Comments: Over 2 yrs, I had 7 Botox treatments. I stopped because it really didn't work and it left my mouth drooping.
Jim Tsai

Oakville, Ontario (Canada)
Left
2001
Yes
No
Yes
1
11/24/09
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: The botox worked for several years. But as my symptom progresses, the botox became less effective to control the twitching. At the present, I require 13 to 20 injections to control the twitching.
Debbie Turner

Rockaway, NJ (USA)
Right
1994
Yes
No
Yes
1
01/29/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Click here to see my "Personal HFS History".

MVD Comments: Click here to see my "MVD Diary".

Ingrid Turrey

Cambria, CA (USA)
Right
1999
Yes
No
Yes
1
06/11/04
Dr. John Alksne
La Jolla, CA (USA).
Yes

Botox Comments: takes the edge off- but doesn't stop it.

MVD Comments:

Michael Uhrich

Kirtland Hills, OH (USA)
Both
1998
Yes
Yes
No





Botox Comments: It is fine - effective and lasts about 3 to 4 months. I would have a hard time working without it. I have had numerous injections. It depends on where it is injected. Sometimes if it is bit low, I bit my lip.
Jean Umlor

Grayling, MI (USA)
Left
1999
Yes
Yes
No





Botox Comments: Was very effective for 8 years; seems to be less effective for past year.

Scheduled for MVD Consultation on 01/18/10 with Dr. Kenneth F. Casey, Oakwood Southshore Medical Center, Trenton, MI (USA).

Shahin Vaez

North York, Ontario (Canada)
Right
1993
Yes
No
No





Botox Comments: It was a wonderful relief for the first couple of sessions. The next sessions (total of 10 sessions every six month)they were making my face to droop and it was not that effective. Its side effects included the dark eyelid, caused some numbness and I notice a little bit of unevenness on my face. I regret trying botox, as it was more of a disaster than of a help.
Cathy Vale

McAllen, TX (USA)
Left
2001
Yes
Yes
No





Botox Comments: Just got my first injections (3) on 08/07/02. Doctor (neurologist) says it will take 2 or 3 days to take effect.
Sandra Van-Harris

Bridgeville, DE (USA)
Right
2002
Yes
Yes
No





Botox Comments: No dramatic changes.
P. vd Hammen

Overbetuwe (Netherlands)
Right
2006
Yes
No
Yes
1
10/08/08
Prof. dr. André Grotenhuis
Nijmegen (Netherlands)
Yes

Botox Comments: Can hardly lift the right corner of my mouth. No flickering anymore but spasm of several seconds.

MVD Comments: Update as of 10/12/08 – While inserting the catheter they injured my urinary tract, and it's been bleeding ever since. I have this double feeling, happiness and being run over by a truck! I have a noise in my head, like I’ve been standing in front of a large speaker at a concert and I have tension on my head because of my right eyebrow being a little higher then the left.

Karen Varbalow

Stuart, FL (USA)
Right
2002
Yes
No
Yes
1
12/11/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments:

Click here to see my "Personal HFS History".

Caroll Vaughn

Mount Vernon, OH (USA)
Right
1990
Yes
No
Yes
1
04/15/99
Drs. Jannetta & Kassam
Pittsburgh, PA
No

Botox Comments: Only tried it once. Results were almost as bad as hfs. MVD Comments: Update as of 04/26/08 - Was scheduled for MVD #2 on 04/23/08 with Dr. Kassam but indicates the current spasms are caused mostly by a place that makes the surgery very high risk. High chance of stroke, facial paralysis, wouldn't cure the spasm but probably make it worse. (Was "SPASM FREE" from April 1999 until February 2006 when the spasms returned).
Fran Vecchio

Forked River, NJ (USA)
Right
1995
Yes
No
No
2
10/05/05
Drs. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox for 7 years, worked but face started to droop and caused distortion. No side effects.

MVD Comments - (MVD #1 with Dr. Kassam on 01/12/05 - was spasm free for 5 days after MVD)

Jim Vercammen
Inactive Memb.
Vancouver, British Columbia (Canada)
Left
1996
Yes
No
Yes
1
04/30/02
Dr. Anthony Kaufmann
Winnipeg ,Canada
Yes

Botox Comments: Botox, November 28, 2001. This provided considerable relief but I worried that its effectiveness would diminish over time.

MVD Comments - Recovery from MVD went very well. Spasms completely disappeared within 7 days.
Ben Villamor

Mississauga , Ontario (Canada)
Right
2002
Yes
No
Yes
1
05/05/09
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
No

Botox Comments: Botox injection every 4-6 months - face is uneven.

MVD Comments: Update as of 01/21/10 – My surgery went well, no side effects whatsoever but still not spasm free. I had a slight fever, headache but they are now gone. I'm still not spasm free., however, I'm happy to report that the spasm does not bother me during sleeptime. During daytime the spasms are sometimes mild and sometimes strong especially when shaving, brushing my teeth, reading, watching TV and driving.
Glynis Vink

Johannesburg (South Africa)
Left
2001
Yes
Yes
No





Botox Comments: Best results. The results are not always the same, but worth having. Side effects, eye lid does not always close properly if the injection is too close on eyelid. Face can be lobe sided untill botox wears off. (about 5 months).
Frank Visosky

Yonkers, NY (USA)
Left
2002
Yes
Yes
No





Botox Comments: Sometimes it works real well, say 90% effective and sometimes it doesn't, say 60% effective. Lasts 3 months.
Mary Wade

Mechanicsville, MD (USA)
Right
1996
Yes
Yes
No





Botox Comments: Botox works but I have to travel so far away to get my injections every four to five months.
Barry Wagner

Oak Creek, WI (USA)
Right
2002
Yes
Yes
No





Botox Comments: Have taken treatment twice with 58 shots around eye, cheek,upper lip. told needed every 4 months. First month after shots eyelid droops so as to blur vision. after one week cheek and upper lip stops spasming. Lasts about 3 months and problem starts again and need shots again. Some headaches the day after the shots last for a couple of days.
Osman Waja

Sydney (Australia)
Left

Yes
No
No






Gloria Walczyk

Buffalo, NY (USA)
Left
2003
Yes
Yes
No





Botox Comments: I get the injections every three months. Sometimes I feel like it's better after wards, but other times like these past three months I feel like there has been little results. I do know that since the Botox, the spasm has spread to other parts of my face. Like it's just finding some other muscle to contract. I no longer have a full smile, so it's not something I do often, especially in pictures.
June Walker

Caledon, Ontario (Canada)
Right
1987
Yes
No
Yes
2
05/05/09
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
No

Botox Comments: I have been receiving botox injections since 1995. In the beginning the injections lasted for 3 months. Now the effects of the botox wear off after 7-8 weeks. With each series of botox injections the site areas are creasing. I have very little tearing in the right eye and I have to use drops in my eyes continuously. For the past year I have had ringing in my ear and I have great difficulty sleeping. I became very frustrated with the Botox injections as their effectiveness becomes less and less.

Click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: Update as of 05/114/09 - Released from the hospital after MVD#2 today. My extended stay was due to a few complications which are slowly correcting themselves. MVD #2 was more difficult than the first for me, but not as challenging for Dr. Kaufmann. I truly believe in my heart that this MVD will be completely successful, given time for the nerves to heal. Dr. Kaufmann is #1 in my books as he is for many Canadians. (MVD #1, also with Dr. Kaufmann on 10/02/07 - Was spasm free for 3 months following surgery).

Click here to see my "MVD Diary #1.

Jim Wallace

Gold River, CA (USA)
Left
1988
Yes
No
Yes
1
06/28/07
Dr. J. Paul Muizelaar
Sacramento, CA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update as of 07/24/07 - Ten days after surgery, started experiencing weakness in left side of face, especially lips and eye. Will update as symptoms change. Weakness is improving. Have altered taste still. FYI, I had my MVD without Intra-operative Monitoring.
Ling Wang

Toronto, Ontario (Canada)
Left
1987
Yes
No
Yes
1
05/30/08
Dr. Michael Tymianski
Toronto, Ontario (Canada)
Yes

Botox Commentrs: no effect

MVD Comments:

Edith Warter

North Kingstown, RI (USA)
Right
2000
Yes
No
Yes
1
12/03/08
Dr. Fred G. Barker
Boston, MA (USA)
Yes

Botox Comments: Botox stopped the twitching for a while, but it also froze the right side of my face and I looked lopsided.

MVD Comments: Update as of 12/12/08 - Nine days post-op and I still nap, although less and less each day. Except for a very few, mild and random spasms the first two days after surgery I have NOT HAD ONE SPASM. I never thought I'd be able to say that. I was diagnosed 10 years ago but was always "afraid" of surgery. My first day post-op I did feel rather sick to my stomach, but hospitals have a way of helping with that. Don't be afraid, with the right surgeon, hospital and support group you can do it.

Steve Wasson

Woodridge, IL (USA)
Right
1998
Yes
No
Yes
1
04/11/05
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: The initial effect of botox was immediate and impressive. My doctor and I worked on the dosage and number of shots in order to limit any side effects such as droopiness. I have been getting 6 to 8 shots every 3 months since Sept 2001. Over time the effectiveness of the shots has decreased significantly.
Matt Weber

Springboro, OH (USA)
Right
2002
Yes
Yes
No





Botox Comments: When done properly, it will allow for temporary relief of spasms. When done poorly, it may look as though you've had a stroke. I've had both. If your doctor is inexperienced in giving Botox injections, FIND SOMEONE else. You may want to try a major college/university in your area. I've had better luck there.
Steven Weber

Norfolk, VA (USA)
Left
2002
Yes
No
Yes
1
03/12/09
Dr. Dennis J. Rivet
Portsmouth VA (USA)
No

Botox Comments: Botox twice. first time I looked like I had had a stroke, second time had no effect. Getting third attempt on 04/03/07. I do not like Botox, but it works.....too good.

MVD Comments: Update as of 03/16/09 - I had my MVD on 03/12. I am still a bit dizzy and have a congested left ear. Dr. Rivet said he did not have much confidence in the success due to the tests he did after the MVD. But, my wife has noticed a definite improvement, has seen both eyes open at the same time and the left eye open more than before.

Lee Wells

Studio City, CA (USA)
Left
1997
Yes
No
Yes
3
01/18/01
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: It gave a small relief for a while, but my eye got so dry and I got an infection in my eye because of eyelash getting stuc. I was having distortion around my mouth, to make a long story short--I didn't like the side effects and had to go too often.

Post MVD Conditions - None (1st MVD 11/30/99, Dr, T.Walsh, LaJolla, CA)
Jan Welsh

Harrogate (United Kingdom)
Right
2007
Yes
Yes
No





Botox Comments: No effect.
Kathleen Welter

Oakland, CA (USA)
Right
1995
Yes
No
Yes
1
04/12/05
Dr. Stephen Nutik
Redwood City (USA).
Yes

Botox Comments: Tried BOTOX one time and it did stop the spasm in the eye but I didn't try BOTOX in the mouth area, because I heard that there is often a droop. Overall, I did not really like BOTOX and did not relish the thought of getting injections for the rest of my life. Also, I felt a sinus headache alot of the time while with BOTOX.

MVD Comments:

Rickey Werner

Woodridge, IL (USA)
Right
1997
Yes
No
Yes
1
03/10/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update as of 10/23/06 - After 19 months, I can now smile radiantly without a twitch, wink or a spasm. I believe I am finally "SPASM FREE". Up until last month, I still had an occasional twitch and was beginning to think I would never be spasm free. Even, the neurosurgeons I work with thought I should have been spasm free a couple months after my surgery and were upset with my results. I told them I would give my nerve two years to heal, based on the damage that Dr. Jannetta told me I had. Today, I am writing to you, SPASM FREE", to advise others not to give up hope. Just remember to give your poor, abused nerve time to heal.

Homer Wesolowski

Essex Junction, VT (USA)
Right
1989
Yes
No
Yes
1
04/09/99
Dr. Thomas Lovely
Albany NY
No

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary".

Sherril Wesselman

Pietermaritzburg (South Africa)
Left
1998
Yes
Yes
Yes
2
11/01/07
Mr. Du Trevou
Durban (South Africa)
No

Botox Comments: Botox works, but it does not last the full 3 months. Botox treatment only started after the MVD's.

MVD Comments - Spasms and headaches were more severe after 2nd MVD.
Duane Wheatley

Grand Junction, CO (USA)
Left
1997
Yes
Yes
No





Botox Comments: Sometimes I feel or really don't feel as the face is there. I bite my lip a lot because of the shots. Botox really doesn't seem to work well anymore.
Judy Whitaker

Nashville, TN (USA)
Right
2001
Yes
No
Yes
1
09/28/06
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: I thought Botox was a miracle drug the first time. Lasted about 6 mo. 2nd time last for about 3 mos with less success. 7/04 injected more but spasms never quit but I lost movement in my mouth and could not smile. I have decided to stop Botox after Dr. Jannetta's nurse said I had to be off for 9 mos. if I want to have MVD.

Click here to see my "Personal HFS History".

MVD Comments:

Rebecca Whitcombe

Grayslake, IL (USA)
Left
2003
Yes
No
Yes
1
06/22/09
Dr. Gail Rosseau
Chicago, IL (USA)
No

Botox Comments: Did Botox for a couple of years, which worked but was inexact and wore off over time & had to be repeated. Was somewhat effective, but expensive (even with insurance), and didn't like side effects, such as droopiness on left side of face.

MVD Comments: Update as of 07/27/09 - My MVD went very well, I am not yet completely spasm-free, but I’m hopeful that I will be soon. The spasms are MUCH less frequent and MUCH less intense than they were before surgery. Dr. Rosseau was wonderful, the care at CINN was terrific, and I have absolutely no regrets. The recovery process has been frustrating, I had no idea it would take me so long to get back to a normal activity level!!! But every day is better, and I can't complain.

Byron Wholey
Inactive Memb.
Reno, NV (USA)
Left
1996
Yes
No
Yes
1
07/07/04
Dr. Hilari L. Flemming
Reno, NV (USA)
No

Botox Comments: I have injections every 4 to 6 months. They are effective only to take the edge off the contractions.The Botox seems to last for about 6weeks for any relief.

MVD Comments: As of 08/18/04, It has been 5 weeks since surgery and the spasms are the same. However I seem to have more periods of calm between spasms. Next Dr. visit 8-20-04.
Mike Wild
Inactive Memb.
Rochester, (United Kingdom)
Left
1994
Yes
No
Yes
1
09/23/03
Prof. Hugh Coakham
Bristol (England)
Yes

Botox Comments: The side effects from initial Botox treatment in 95-96 were worse than the spasms - unable to fully close or open my eye, lost muscular control of my eyeball so I could not see properly, the whole lower portion of my face drooped and was semi-paralysed, so I stopped the treatment. I restarted 98-00 every 3 months and found it relieved the spasms and did not affect my sight, but the effectiveness against the spasms decreased over time and the drooping face got worse, so I stopped again. Last try was 01-02, 3 monthly at first, then increasing to 2 monthly, but I stopped because it was having almost no effect on the spasms and what seemed like a permanent distortion of the face. Over the period since I started Botox my nasal passage has either closed up or I have lost muscular control (not sure which) so that I can only sleep laying on my left side to keep the left nasal passage open. I am sure that all the muscles have weakened that side.

MVD Comments: My MVD went well and the wound healed quickly. Recuperation took several weeks. The spasms returned 2 days after the MVD, but very gradually became less severe over the following months until I found myself Spasm Free after about 3 months. All of the physical symptoms have gone, including the problem with breathing through the left nasal passage (the tinnitus is still there, but may not be related to the HFS). Choosing to go for MVD was one of the best decisions I have ever made.

Judson Wildman

Camano Island, WA (USA)
Left
1997
Yes
Yes
No





Botox Comments: Been using it for 7 years, shots 3 times a years, seems to be effective for me. As long as I have this semi under control I will keep on with Botox, I don't like all the side affects I hear about the MVD. Some say they have trouble with the shots, they should find another Doctor.
Ken Wilkerson

Atlanta, GA (USA)
Left
1995
Yes
Yes
No





Botox Comments: Very affective so far. Works great, been taking them since September 2007. So far the Botox has worked fine.My doctor had to learn where the best spot in my face were to give me an even smile(I came out uneven after the second dosage).He has now mastered the dosage and placement of my shots.
Carrie Wilson

Williamstown, KY (USA)
Left
2002
Yes
No
Yes
1
02/19/07
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

Botox Comments: Still had twitching, my left eye was always very dry, left side of my face drooped very bad.

MVD Comments -

Ken Williams
Inactive Memb.
Silver Springs, MD (USA)
Right
1992
Yes
No
Yes
1
05/01/97
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: Initial benefits of Boxtox were outstanding, but due to a buildup of anitbodies over time, the shots became less and less effective. The pulling of my face on my right side due to the spasms plus the Botox shots caused my smile to be lopsided, and I looked like I had suffered a stroke.

Post MVD Conditions - None.
Lynne Williams

Torquay (United Kingdom)
Right
2005
Yes
Yes
No





Botox Comments: first time my eye didnt close or blink, then rest of times just injections under the eye which is better. Works well.
Margaret Williams

Panama City, FL (USA)
Right
1993
Yes
Yes
No





Botox Comments: The first injections seemed to last for about 7 months. Then second injections didn't seem to last as long, but now I can go for about 6 months between injections.
Irene Wilson

Hammond, IN (USA)
Right
2001
Yes
No
No





Botox Comments: At first the twitchting wasn't so bad and the Botox helped but it seemed to affect my breathing and then I read in Awake magazine that it could paralyse the breathing muscle. So it scared me and I stopped having it done.
Starr Wilson

Montgomery, AL (USA) ilver Springs, MD (USA)
Left
2002
Yes
No
Yes
2
04/13/06
Dr. Peter J. Jannetta
Pittsburgh, PA
No

Botox Comments: Did not work, left eye and mouth drooped.

MVD Comments: Update as of 04/18/08 - I still get pulling in my left cheek and eye. I can go days with barely any problem then some days it is worse. BUT, not anything like before my surgery. I do find lack of sleep, being overly tired and stressed makes it worse. My surgical site still gets very tender and aches on occasion then goes away. Although I'm not spasm free, I would say I'm about 80% ok and would do it all over again if it did get worse. After MVD #2, was Spasm free for 3 1/2 months. (MVD #1 on 04/14/05 with Dr. Barton Guthrie at UAB Hospital, Birmingham Alabama (USA) and was spasm free for 1 week).

Charlotte Wimmer

Vienna (Austria)
Left
1991
Yes
No
Yes
1
09/07/01
Prof. Heber Ferraz-Leite
Vienna, (Austria)
No

Botox Comments: Botox with absolutely no positive results but negative, Bell's Palsy for 6 month!

MVD Comments:

Krista Wix

Simpsonville, SC (USA)
Left
2005
Yes
Yes
No





Botox Comments: Works for about 3 months but has made that side of my face look like a stroke.
Lionel Wolfson
Inactive Memb.
Phoenix, AZ (USA)
Left
1992
Yes
No
Yes
2
01/18/01
Dr. Robert F. Spetzler
Phoenix, AZ
Yes

MVD Comments: Update as of 04/29/09 - It took almost eight months after my second surgery in 2001 and after two courses of Botox B ( Botox A did not work after my first surgery) that I noticed that I no longer required Botox. I ascribe it to a slowly decompressing 7th nerve. The second surgery involved moving the offending blood vessel off and away from the 7th nerve and fastening it to the skull. I have now been spasm free for almost eight years. 7th nerve may decompress in time. (1st MVD 04/99, Dr. Robert Spetzler, Phoenix, AZ).
Steve Wolters

Rapid City, SD (USA)
Right
1978
Yes
No
Yes
1
08/21/06
Dr. Stephen J. Haines
Minneapolis, MN (USA)
Yes

Botox Comments: Started botox in 1994, it works well for 3-5 months. I was having difficultly smiling, because of one injection to close to my mouth, but have changed that. The last year before my MVD the botox only would last 2-3 months.

MVD Comments: Click here to see my "MVD Diary".

Kepa Wong
Inactive Memb.
Honolulu, HI (USA)
Left
1994
Yes
No
Yes
1
12/31/02
Drs. Nakatori Fukushima & Raymond Tanaguchi
Queen's Medical Center, Honolulu, HI (USA)
Yes

Botox Comments: Helps to control spasms, however, unable to blink left eye and smile. Drooping left side of mouth.

MVD Comments: Spasm free immediately after surgery and had a very easy recovery. The MVD surgery was the very best decision I have made after 8 years of suffering from HFS. By the way, they even found a subarachnoid cyst that they removed while they were in there so I got a two-fer special.

Max Wong

Fullerton, CA (USA)
Left
2002
Yes
No
Yes
2
09/26/05
Dr. Mark Linskey
Orange, CA (USA)
Yes

Botox Comments: First injection feels great. Although it didn't stop the spasm completely, it minimized it to a point that was tolerable. After about the 4th injection, my lower left face looked paralyzed. I couldn't really smile, and my spasm did not minimize after that injection. So, I stopped. That was about 13 months ago. Now, I've learned to live it.

MVD Comments: Update as of 11/12/06: Well, as for my recovery goes, it was an uphill battle. I am spasm free, although some flutters from time to time. The problem I'm having is facial paralysis. After the second surgery, the entire left side of the face was paralyzed along with the hearing, balancing, headaches, sleeping disorders, etc. I think just about all the post-op side effects that can happen happened, but that was expected. Over the next month or two, everything got better, except the facial paralysis and there's still some spasm around my eyes and lips. It wasn't until the eighth or ninth month that my spasms completed left. Although my facial paralysis has gotten better, it’s not close to being completely normal. At my annual check up, I can close my eyes (that was a relief, I was fed up with taping my eyes at night), I can't raise my eye brow, I can smile somewhat but can't smile to show my teeth on my left side (crooked smile), the facial symmetry is about 90 to 95 percent (this took a while, I was at around 70-80% till the 10th month). As I was told, for the next six month, it may get a little bit better, but don't expect any miracles, and after the 18th month, that's pretty much it. So, I accepted the conditions and went on. I feel that these conditions are far more livable than dealing with the constant facial spasms. Don't get me wrong, I don’t want to discourage anyone from having the surgery, as mine was a unique case, and probably with unique symptoms. If I had to do it over again, I wouldn't hesitate considering the surgery. (MVD #1 on 09/22/05 with Dr. Linskey).

Edward Wooldridge
Inactive Memb.
Midlothian, VA (USA)
Left
2005
Yes
No
Yes
1
11/14/05
Dr. K. Singh Sahni
Richmond, VA (USA)
Yes

Botox Comments: Only tempory relief. I did not like the results, made my face droop.

MVD Comments: I have been spasm free ever since the operation. I have only the highest regards for Dr. Sahni. His professionalism at every meeting was exemplarily. My only regret is that I had not met Dr. Sahni earlier, because I would surly have had the operation then and saved myself years of frustration and embarrassment.

Leroy Wooters

Boise , ID (USA)
Left
2000
Yes
No
No





Botox Comments: Botox didn't work.
Ellie Worden

Spokane, WA (USA)
Right
1999
Yes
Yes
No





Botox Comments: I just had my second session of Botox early in October 2002, two weeks ago. I had five injections. I asked for a lower dosage (25 units) as my spasms were not two intense. It was four months since I had my first session. Now I am sorry I had a mild dosage as my spasms have increased. Botox seem to help a little, but I probably should had had a stronger dosage. I have no drooping, my eyes are not as irritated. I'll stay with Botox as long as it helps and my spasms are not too bad.

MVD Comments: Scheduled for MVD Consultation with Dr. Chandranath Sen, St. Luke's Roosevelt Hosp., New York, NY (USA) on 09/16/03

Jay Wright

Apopka, FL (USA)
Right
1994
Yes
No
Yes
1
01/17/07
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Tried it 2 times (May and October 2005). First time was moderately successful (cut spasms by 50%) and second time was less successful. Now the botox has worn off and the spasms are worse.
MVD Comments:
Kay Wright

Oklahoma City, OK (USA)
Right
1995
Yes
Yes
No





Botox Comments: My eye seems to be drooping now.
Kate Yan

Houston, TX (USA)
Left
2002
Yes
No
No





Botox Comments: Tried Botox injection twice but didn't like the results. Botox doesn't cure the problem, I always felt the spasms were there, just not that obvious. To me Botox just hides the problem temporarily. Once it wears off, the spasm will resurface and you are back to square one. It is not a cure, not to mention the side effect is equally embarrassing as HFS if not worse.
Wong Yong Jet

Johor (Malaysia)
Right

Yes
Yes
No





Botox Comments: Quite effective, about 90% in controlling the spasms. Side Effects: Unable to close eye completely, lop-sided smile, "crooked" lip.
Scott Yoshino

Snoqualmie, WA (USA)
Left
19992002
Yes
No
Yes
1
06/23/09
Dr. Marc Mayberg
Seattle, WA (USA)
Yes

Botox Comments: It worked for a few weeks, but then my twitch returned. I also had a numb face which caused it difficult to smile or talk.

MVD Comments: Update as of 07/04/09 - When I woke up from anesthesia, I was told the surgery went well. They found 2 compression sites on my nerve from the same vessel., which were successfully repaired. I'm spasm free since surgery. It’s remarkable not to have spasms. I’m trying to work through some balance issues and some nausea. It seems to be getting better every day, but it sure is difficult to work through. I am using a walker to walk around. I also have to get physical therapy next week to help with my balance. I also have some vision problems. I think my vision has changed. Both my glasses and contacts are not as clear as prior to the MVD.

Nancy Young

Cortlandt Manor, NY (USA)
Left
1995
Yes
No
Yes
1
08/01/07
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: 8 treatments over 2 yrs. Initially effective in masking the spasms, gradually less effective. Side effects included drooping of lower left eyelid, irritation and tearing of eye, slight drooping of left side of mouth.

MVD Comments: Update as of 08/05/07 - I awoke from my surgery "SPASM FREE" and felt as if I was the luckiest person in the world. All I remember is Dr. Kassam whispering "Hello" in my left ear (spasm side) and hearing this clearly enough to respond with my own hello. I guess with this group I don't need to describe how happy I am to have my smile back. Thanks to all HFSA members for sharing their experiences and expertise ... I would not have been able to go ahead with the decision to have surgery without having read about all of you.

Scott Yoshino

Snoqualmie, WA (USA)
Left
1999
Yes
No
Yes
1
06/23/09
Dr. Marc Mayberg
Seattle, WA (USA)
Yes

Botox Comments: It worked for a few weeks, but then my twitch returned. I also had a numb face which caused it difficult to smile or talk.

MVD Comments: Update as of 07/04/09 - When I woke up from anesthesia, I was told the surgery went well. They found 2 compression sites on my nerve from the same vessel., which were successfully repaired. I'm spasm free since surgery. It’s remarkable not to have spasms. I’m trying to work through some balance issues and some nausea. It seems to be getting better every day, but it sure is difficult to work through. I am using a walker to walk around. I also have to get physical therapy next week to help with my balance. I also have some vision problems. I think my vision has changed. Both my glasses and contacts are not as clear as prior to the MVD.

Siamawan Yulia

Surabaya (Indonesia)
Left
2004
Yes
No
Yes
1
07/01/08
Dr. Mohammad Sofyan
Husada Utama Hospital, Surabaya (Indonesia)
Yes

Botox Comments: Botox, not effective,just lasts for 6 months.
MVD Comments:
Pilus Yunus

Sitiawan Perak (Malaysia)
Left
2004
Yes
No
Yes
1
05/22/08
Dr Cheang
Perak (Malaysia)
No

Botox Comments: I find it doesn't really work efficiently. It gives me an uncomfortable feeling on my left face. It caused sagging and drooping of my left lips.Can be misconstrued as post stroke by others who don't understand this problem.

MVD Comments: Update as of 10/31/08: I lost hearing in the left ear and although I was spasm free for the first two months, the spasms have returned.

Ted Zander

Blairstown , NJ (USA)
Right
2002
Yes
Yes
No





Botox Comments: Getting less effective.

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