For details of my Botox® use see my Personal Botox® Experience.
For details of my MVD surgery see my MVD Diary.
Permission granted the HFSA to post Personal HFS History on website.
June Walker, March 19, 2008
I have 21 years of HFS History; please bear with me.
Diagnosis of HFS:
In December 1986 when I was 5 months pregnant with our second son I felt flutters under my right eye. I contacted my family doctor who in turn made an appointment with a neurologist at the Credit Valley Hospital in Mississauga, Ontario. On my first visit with the neurologist he gave me a blink test and told me I had Hemifacial Spasm (HFS). I was stunned, I had never heard of HFS. He explained to me that there was an offending blood vessel/artery touching my facial nerve in my brain. He said there are two treatments for this condition, one being medication (anti-convulsant), which in his experience only masks the condition, secondly there was Microvascular Decompression (MVD) surgery; performed by a Dr. Peter J. Jannetta in Pittsburgh, PA (USA). I requested pamphlets or information on HFS, his answer was “there isn’t any”. I am the type of person that has to research and research, in this case that was not possible. Great, I have a condition that is not very well known. The neurologist recommended I see a Neurosurgeon at the Mississauga General Hospital and he would explain the surgery in more detail to me. I was scheduled for a MRI, CT scan and evoked potentials after my baby was born.My appointment with the neurosurgeon was in February 1987. He gave me as much information as he could about HFS (again no pamphlets or articles in any medical books). He recommended I contact Dr. Jannetta in Pittsburgh concerning MVD surgery. I also asked if he had any other patients with HFS and his answer was no. I went home a little disheartened and continued on with life with our two year old and a new baby due in April 1987. In May 1987 I had my MRI, CT scan and evoked potentials. In April 1988 our third son was born. I was a little apprehensive having brain surgery with three boys under age 4.
My right side HFS progressed very slowly for the next seven years (1993). I had mild spasms around my eye and progressing down my right cheek. I did not discuss my condition with my family, friends or co-workers, other than my husband. No one asked me when I was having a spasm and I did not offer any information. There were times when I wished people would ask and then I could talk to them about it. At this point I am still considering going to Dr. Jannetta for MVD surgery.
Treatment of HFS:
In August 1993 my family doctor was concerned with the progression of my HFS and recommended I see another neurologist. My spasms are now progressing further down my cheek with more intensity. I met with a neurologist, Dr. Kern, who informed me that Botox® was being used for HFS sufferers, if I was interested. I made an appointment with the movement disorder doctor at the Credit Valley Hospital in Mississauga, Ontario (Canada).In November 1993 I received my first Botox® injections around my right eye and upper cheek area. The next day my eye would not close properly. I called the doctor and she told me it was one of the side effects of the Botox® and it would be better in 2-3 weeks. I was instructed to insert Tear Gel in my eye each night before going to bed, to keep my eye lubricated. I used Tear Gel daily for 14 years. The tears did not return to my right eye. The Botox® injections really helped my spasms, but my eye took 3 weeks to close properly. The next 8 years my HFS progressed to the point that I had 16-18 injections every three months in my upper and lower eyelid and cheek area. The effectiveness of the Botox® would wear off after two months. At least for 2 months I had relief from the severe spasms. In 2001 as my spasms became even more severe the doctor recommended a Botox® injection below my lip (to help with the pulling on my mouth). I realized almost immediately that there was something wrong, as I had no feeling in the right lower part of my lip. The movement disorder doctor did not once recommend MVD surgery. By now the spasms are affecting my eye, nose, cheek and mouth. Oh, how I detest this condition. I am in the process of searching for a new doctor to administer my Botox®.
Turning Point of my HFS:
In March 2001 I received notification from “Circle of Friends”, a HFS online support group (no longer in existence) that there was a conference to be held in Toronto in April 2001. I was informed there would be a Dr. Anthony M. Kaufmann from Winnipeg, Ontario (Canada), speaking on MVD surgery. I was so excited to be able to finally meet or hear someone speak about HFS and MVD surgery. My husband and I attended the conference and viewed a video of MVD surgery. We were very impressed with Dr. Kaufmann’s knowledge and professionalism. I knew then that Dr. Kaufmann would be the surgeon of my choice when it was time for me to have surgery. I expressed this to Dr. Kaufmann, he gave me one of his business cards and to this day I carry that card with me. Also at the conference was a Dr. Kraft speaking about HFS and Botox®. I spoke to Dr. Kraft and inquired if he would be able to take me as a patient. I felt I had won the jackpot; Dr. Kraft for my Botox® and Dr. A. Kaufmann for MVD surgery. I came away from the conference feeling very confident; I had made up my mind to eventually have MVD surgery.
Changing Botox® Doctors:
I contacted Dr. Kraft for an appointment to administer my Botox® injections. Dr. Kraft administered the Botox® around my right eye, cheek, nose and chin area. Different sites compared to my previous doctor. I was amazed when I was able to close my eye after the injections. I believe that this was due to the sites that Dr. Kraft injected the Botox®. The Botox® alleviated the severity of the spasms for 2 months with no side effects. As each year goes by my spasms are getting more severe, more Botox® injection sites, now the spasms are in my neck. I now have ringing in my ear and a ticking sound when I try to go to sleep at night. I was becoming so self conscious of my spasms. When I talked, laughed or smiled the spasms would hit me with a vengeance.In 2002 during my search for more information on HFS and MVD surgery, I came across the Hemifacial Spasm Association (HFSA). I was so excited to have at last found other people with the same condition as myself. I spent countless hours on the site absorbing as much information as possible. My prayers had been answered. The HFSA has a wealth of knowledge.
I am now in my 19th year with HFS. In March 2005 I stopped my Botox® injections for 8 months in preparation for MVD surgery. Without the Botox® I realized how severe my spasms really were, they would start in my eye, down my cheek; distort my nose and mouth and spasm in my neck. Prior to this, Botox® had given me some quality of life.
November 2005 I contacted Janice Nesbitt in Dr. Kaufmann’s office to let her know that I was ready for surgery. I was preparing for surgery when my sister-in-law developed terminal cancer (December 2005). Called Janice and told her I had to put my surgery on hold, back to Dr. Kraft to start Botox® injections again. March 2006, one of my brothers was diagnosed with terminal lung cancer. December 2006 – March 2007 I spent in Quebec with my brother and family. My spasms are extremely severe, from my eyebrow to my neck.
Final MVD Decision:
April 2007, I contacted Janice Nesbitt in Dr. Kaufmann’s office and said we had to get the ball rolling on my MVD surgery. My last Botox® injections were in March 2007, and I am going through with it this time. I could no longer tolerate this demon called HFS. Now “It’s all about me.”June 2007, Janice sent me instructions on tests that were required i.e. MRI, chest x-ray, EKG and blood tests. My GP and Dr. Kraft completed all other forms.
July 13, 2007, I was so excited, after 21 years with HFS I finally met another person Paula Hiltz) who had HFS and a successful MVD surgery performed by Dr. Kaufmann. I had waited all those years to meet someone. We had lunch and it was such a great feeling to see how happy and spasm free Paula was, as my face and neck decided to spasm out of control. Paula will always hold a special place in my heart.
August 24, 2007, I received a call from Andrea Kinnear in Dr. Kaufmann’s office, confirming my surgery date of October 2, 2007 at 9:30 a.m. I have been waiting so long for this date; it is difficult to put into words how I feel. I am so happy the date is finally confirmed. September 4, 2007, I booked my reservations at the Best Western Charterhouse Hotel in Winnipeg., Ontario (Canada).
On September 5,, 2007, I received an email from Andrea Kinnear in Dr. Kaufmann’s office to rebook my surgery from 9:30 a.m. on October 2, 2007 to September 27, 2007. My consultation with Dr. Kaufmann was scheduled for 8:30 a.m. on September 26, 2007; anesthetist at 1:30 p.m. Yes, now it is even sooner. I called Best Western Charterhouse Hotel and changed my reservations. I will be the happiest person in the world to be rid of these spasms.
On September 8, 2007, I noticed fluttering under my left eye. Oh no, not HFS on both sides. What are the chances of that happening? I decided to concentrate on my upcoming MVD for right side HFS and deal with the left side later.
September 21, 2007, my husband has a cold and flu; he is in quarantine at home. I do not want to get sick at this point. September 23, 2007, two friends are driving to Winnipeg with me; my husband will fly out later. We left my home at 5:30 a.m. and arrived in Winnipeg on September 24th at 5:00 p.m.
On September 26, 2007 at 8:30 a.m. at Winnipeg Health Sciences Centre I had my consultation with Dr. A. Kaufmann. I was so impressed with his demeanor; he made me feel so at ease. I felt very confident that I had chosen the best surgeon to perform my MVD surgery. I informed Dr. Kaufmann that I had flutters under my left eye for several weeks. At 2:30 p.m. back to the hospital to Pre-Admission Clinic and an appointment with the anesthetist. I am ready for my surgery tomorrow morning (September 27, 2007) at 9:30 a.m. I am so anxious and not the least bit nervous. We went out for dinner; my cell phone rang at 5:30 p.m.; it was the Admitting Office informing me my surgery for tomorrow was cancelled due to a shortage of beds in ICU. Everything happens for a reason, when I saw the full moon in the sky I understood. I went back to the hotel and emailed Janice Nesbitt, Dr. Kaufmann’s nurse. She called me almost immediately and informed me about the shortage of beds and they will not schedule surgeries to jeopardize the health of their patients. Janice called the following morning with a new surgery date of Tuesday, October 2, 2007 at 7:30 a.m.; I was instructed to report to admitting by 5:45 a.m.
MVD Day:
I went into surgery on Tuesday, October 2, 2007 at 7:30 a.m. I had a very successful MVD surgery "SPASM FREE" and without any complications. It is so wonderful to be able to smile and not spasm or twitch. I can chew, smile and apply my mascara, all with ease. I was discharged from the hospital at 10:00 a.m. on Thursday, October 4, 2007. I was Spasm Free from the end of the surgery and still am Spasm Free today. I realize the spasms can return at any time; I take one day at a time. Dr. Kaufmann confirmed I also have HFS on my left side. I will wait and see how it progresses. This time I will not wait until the spasms are unbearable.I would like to thank Dr. Kaufmann for being the skilled surgeon and wonderful person he is; the Hemifacial Spasm Association (HFSA); to those who made this website available; for all their knowledge and words of encouragement; to Jack O’Donnell for his tireless efforts; and last but not least Paula Hiltz, for coming into my life in July 2007.
For details of my MVD surgery see my MVD Diary.