Personal HFS History - Ann Ehlen

Note before reading. This essay is purely my thoughts and feelings. It is not to endorse any kind of treatment or doctor, also not to put down any procedure, treatment or doctor.

IS THAT ALL THERE IS?

A MOVING STORY
(pun intended)

March 2002

IN A FEW DAYS I WILL BE CELEBRATING MY 58TH BIRTHDAY. MY BODY IS SLOWING DOWN BUT MY FACIAL SPASMS ARE ON THE MOVE. THIS IS THE STORY OF MY BATTLE WITH HEMIFACIAL SPASMS.

A little background on me, that makes my HFS situation difficult. It is not just cut and dried. Get the MVD and go on.

LAZY EYE

For as long as I can remember I have had a lazy eye. There is a medical term for it but I can never remember how to spell it. The lazy eye is the right eye. For what reason it was not corrected as a child I do not know. Maybe my parents did not know there was help for it. I still have it. I have completely lost my vision in that eye, except for colors and large objects, and still cannot make them out sometimes. No useful vision anyway. I have recently found a support group for lazy eye and there are many adult members with it. My spasms are on the left side, so when they spasm and close my eye, well you know the rest. I cannot see until the spasms decide to let go.

CAR ACCIDENT

In 1989 I had a car accident that I suffered a minor head concussion among other major things. The doctor said it was nothing to worry about. The concussion was on the left side just above the hairline. I could touch there and it would send a shock wave of sorts to behind my left ear and then to just before the mid upper left lip area. It felt really strange. I then noticed I could touch my lip in that area and it would send a zap to the spot in my head. By touching either area would send the zap. This is how I found it to tell the doctor. When I touched my head in that area, it sent the signal. That is the end of that. I lived with it. It never bothered me except when I happened to touch it.

TOOTH EXTRACTION

In the mid 1990’s I had a severe tooth infection and subsequent tooth extraction. At the time of the extraction I experienced something I had never had happen before. I was always a little nervous when I went to the dentist and nearly always had to have oxygen so that I would not pass out. I do not think I had the oxygen this time but something else more profound happened. After the dentist gave me the shots to deaden my gums, I went into a sort of seizure. Shaking really bad and I could not control it. I did not lose my thought process, as I can remember trying to make the shaking stop. I would hold onto the arm of the chair and will my body to stop this awful moving. It would slow down and just when I thought I had it under control my legs would start. The Nurse wound up putting a fan on me and covering me with blankets. It took a very long time to extract the tooth with my bouts of shaking and waiting for it to stop. I have since been told I may have been allergic to the deadening agent. No matter it was a traumatic ordeal and I was very weak for several days.

At the time I was taking courses to become a nursing assistant. After missing, I think, one day of school, I went back.

Shortly after the deadening wore off I started to experience a little twitch in the mid left jaw area. This is the side I had the extraction on and the bottom mid jaw. At the time I did not have access to a computer. I went to the local doctor and he said I should see a neurologist. He set the appointment up for me as they were in the same facility. This neurologist made me feel like it was all in my head. DUH, I know it is in my head. “What if I told you, you will just have to live with it”, he says. He told me about Botox® that was used for it but he himself was not experienced giving the shots. He would have to read up on it. No way I think, I am not going to be somebody’s experiment. I think he told me something about it beings tics. He put me on Tegertol.

To make a long story short, the spasms got so distracting that I finally just gave up going to school. I felt like everyone was looking at me. The Tegertol did not seem to help any.

November 1998

I was put on Paxil, along with the medications for the spasms to help me deal with it. One of them medications was Colonapin.

March 1999

My husband became sick. He was diagnosed with terminal lung cancer on April 16, 1999. He died on June 1, 1999 on his birthday. We had been married for 36 years. The spasms became worse and my Paxil was increased. Things finally began to settle down. I applied for disability in the latter part of June. Not for just the spasms but other medical problems also. We had been living in the country and I gave that up and moved to town to a small apartment.

I got a computer and started to do more research on what was going on with me. I also joined a grief support group on the Internet. In the latter part of 1999 I met Charly on the support group. Things progressed and we were married June 29, 2000.

Charly has been a blessing to me. He is very supportive of the things I have to go through and does as much with me as is possible, like holding my hand, etc.

Dates and years are vague and hard to remember the sequence of things, but I have gone to several doctors and was diagnosed with tics, Dystonia then finally Hemifacial Spasm. I was given to try many medications to help it. None did much and the spasms just kept getting worse. It seems like they increased fast from the little twitch in the middle of my left eye to finally covering the entire left side of my face. I had contractions from mild to hard sustained. Now my eyes became involved. They would close with the spasms. When I get Botox®, my eye does not close good and causes blurriness.

I finally called the Dystonia foundation and got them to recommend a doctor. The only two they had in my state were in New Orleans and Baton Rouge. I chose the Baton Rouge one. A Steven Cavilier, he was very nice and concerned. He said I definitely had Hemifacial Spasm. I got my first Botox® shots that day. This was May 2000. He was very expensive and at the time I did not have my Medicare insurance. I went to him twice and the shots seemed to help some. My eyes got really bad, blurry and tearing. I called the doctor and he said the shots should not cause this. I was almost certain it was from the shots.

July/August 2000

I started calling around locally for a doctor who gave the shots. I found Dr Karen Laird, an Ophthalmologist.

She gave me a through examination and said she did not think the blurring was from the shots either, but she did research and found out it could cause the symptoms I was having.

Fuchs’ Corneal Dystrophy

On the first visit to Dr. Laird she found I had Fuchs’Coreneal dystrophy. This is a genetic disease of the cornea. The cells behind the cornea flake off at a higher rate than normally should be. The eventual outcome for some is a cornea transplant. Mine is in the early stages and may be many years before I need a transplant if ever. Fuchs’ has some of the same symptoms as the Botox® shot cause. So double trouble here. I got several sets of shots from Dr. Laird. Each time they reacted differently.

All of 2001

This was not a good year. Eleven (11) people I knew passed away and many other traumatic events happened. The deaths were my sister’s mother in law and brother and law. They were mother and son. Another sister’s brother-in -law and his wife passed away. They were also good friends of mine. My daughter-in-law’s mother from lung cancer, the same as my husband had. I got Botox® shots in July. They did not do anything. My sister’s in-laws both passed away. Both of my deceased husbands parents died within months of each other. My cousin who grew up with us also died.

And finally my brother passed away. Then my sister had to have a leg amputated. No wonder the shots did not work.

I got Botox® again in November 2001 This time it did a little better controlling the spasms.

March 13, 2002

Today I got my Botox® shots again. These were very painful and traumatic. I don’t know how many more times I can go through this. Gotta do something.

March 20, 2002

Two weeks ago I had a series of Botox® shots. With the shots and the Dilantin I was hoping for better results. The spasms are not as severe, but I am still having them. It seems like this time there was more droop to my face. My eyes are really bad, blurring, from the effects of the shots. I have to use a wetting solution in them all the time. Not as many spasms and as severe, but it seems that the spasms start just at the point where I got the shots and one big pull, trying to do what it did before the shots. It is like they are saying, you may try to stop me but I will never let you rest.

The lady in the office who has had MVD surgery was back and my husband and I had a long talk with her. She told me how things went and what she was experiencing now. Her major problem she said it felt like her head was in a tin cup, but was assured it would go away in about 2 months. I looked at her scar, not too bad considering brain surgery. The scar is hidden by her hair just as I have read it would be. It so turns out that the doctor who did the surgery is supposed to have trained with Dr. Jannetta in PA. I got his name and number and will be calling his office in the near future to see if I can get a consultation.

This constant movement is interfering with my daily life. It seems that they are my life anymore.

My ophthalmologist is very good but she has done all she can and now trying to help me do whatever I need to do.

March 29, 2002 - Stuff

Charly and I have been talking a lot about the surgery. Am I ready to go this step if the doctor thinks I need it? I think I need it. I am ready. It is interfering with my life. I have read that some doctors want you off the shots for 9 months or so before they do the surgery. If this is the case, how bad will my face get before it is time. I have been on some sort of medication so long for this, will I be able to deal with no medication. How far has it really progressed and has the medicine kept a check on it and keeping it from going all the way. There are questions, questions and no answers.

I am truly afraid but it is one of those situations where you know you have to do something whether it is wrong or right, just do something. It is not working too much the way I am going and I have about given up most of my social life. I cannot deal with any stress of any kind or the spasms go really wild. If I have company, they get worse. If I am the company, they get worse. I am having lots and lots of trouble with my eyes. If I get the surgery, will this eye thing settle down? On last visit my corrected vision in the left eye, the spasm side was 20/25 corrected. Will this improve once I get the surgery? The other eye cannot be improved. Is this vision going down due to the Fuchs’?

April 2,2002

I am really in a down state. I went to look for my story to update and could not find it. I finally got here but I am nearly in tears. I was thinking, just like the Botox® or the spasms, work, work and no results. I am still thinking on the consultation. May call today. I feel as if there are so many other medical problems to fix first and then I think if I get the MVD maybe some of these other problems will resolve.

Is that all there is?

What are the pros and cons of getting the injections? Before the injections the spasms are very bothersome. Feels like my head is in a vice. I have a constant pressure in my whole head area. I am always stressed out, and it feels like I need to sleep. I am anti social because I feel everyone is looking just at me or at my spasms. My face is almost in constant motion. It is hard to get to sleep because it seems they know when you want to rest and they begin their movement. It is hard to eat because every movement, smile, frown, eating, crying or talking will set the spasms in motion. Do as little talking as possible. Don’t eat unless necessary. For sure don’t smile. Don’t wink at your husband because it will stay there for a while just like that. Oh no, no kissing either.

Well you get the picture.

Get the shots?

There is pain in getting the shots. The spasms slow down some. What does it control? None of the above, the spasms are not quite as bad without the shots but now a new feature added. There is paralysis added. All those things you could not do before because of the spasms you still cannot do because your face has turned to stone, with a droop. Other things besides those above are, drooling. Have to always excuse yourself for making a mess. Now add to this, biting the inner part of your upper lip because it won’t get out of the way now when you eat. Oh and I almost forgot. Don’t eat with a fork as this causes severe pain, when you hit your lip with the tines. The reason you do this is because the lip is now drooped and when you use to eat with a fork, the lip would automatically move up for the entrance of the fork. Now it does not.

One thing, which is bothersome to me, is, I am a smoker and it is hard for me to smoke. This may turn out to be a good thing, but drinking through a straw is difficult also. So? Is that all there is?

April 4, 2002

Finally, today I got up the nerve to call for an appointment with Doctor Nanda. It was exciting, scary and a host of other feelings involved. When it was all over I cried. After awhile I began to settle down and calmness came over me. Now it feels like a weight has been lifted. Finally, after so many years, something may be done to help the constant moving. I am happy and very scared at the same time. I called my local neurologist to get copies the MRI, MRA and CT scans. I will pick them up tomorrow and fax them to Shreveport. I looked up Dr. Nanda on the LSUMCS web site and he has good credentials. I feel very confident about him.

April 7, 2002

I feel as though I have been living in a fog for a while now. I don’t know for sure when it started but it is getting worse. I go from sleep time to sleep time with not much else in between. I do what I have to do but that all seems vague or hazy as though this HFS is all that I have left to think about. IT HAS TAKEN OVER MY LIFE. That is unfortunate. I am going to be in control from now on.

The reports are faxed. I also got records from Dr. Laird who has been giving me my shots and faxed them. So I guess this ends one chapter of a moving story. Just wait now for my appointment. I know I will be a nervous wreck before it gets here.

Thanks for taking the time to read my thoughts. I hope by writing this it may help someone else do what ever it is they have to do to overcome this disease. We are unfortunate to have this, but we are very fortunate that we have found each other to share our thoughts, fears, sorrows and joys with.

Will add to story later as things progress.

Is this all there is?

NO!!!!

There is HOPE!!!!

May 8, 2002

Hope came in the form of my visit to Dr. Nanda. He can do the MVD surgery for me and will on May 13, 2002.

When I met him on my visit, I was very pleased with what he had to say. He is certainly well qualified and knows what he is doing. I would have had my surgery scheduled that day if he would have but I can see the saneness of it by waiting a few days to make the decision. Like I told him, I would not be there if I did not want the surgery. Seeing a surgeon is kind of a last resort isn’t it?

Had my pre-op tests done yesterday. Done all the right stuff, talked to all the right people, filled out all the right papers and the 13th will be here before I know it.

Since my visit with him last month, some of the fogginess has lifted. I think in part it is due to the fact that I know that I am finally, hopefully, maybe going to be spasm free. Also I have weaned off the Dilantin. I have a little renewed energy. What it is from does not matter. I am just happy that I am getting the MVD.

I guess that is all there is for this part. Hopefully the moving life will be over soon and I can write of better things.

Again, this is just my thoughts and opinions and feelings and does not endorse or put down any method of treatment. This is me and how I did it and how I made my decisions.

If this helps anyone in any way that would be really great. It has helped me to write it. Take heart all. There is hope and there is life after HFS. What that life is remains to be seen. I am ready to accept that life what ever it is. But I will know that I have done all that I can to make it better for me.

Take care all my HFS friends!!!!!!!!!!

 

UPDATES:

 On 05/13/02, I had me MVD with Dr. Anil Nanda at Louisiana State University Medical Center, Shreveport, LA and am pleased to report that I am "SPASM FREE".

As of October 21, 2002, I am still doing pretty well. I can live with this. I have a few twitches around my left eye, sometimes they are pretty sustained. Dr Nanda seems to think they will eventually go away. I am not on any medication for the spasms.

I am still using a cane to walk as I have a bad balance problem also. Dr Nanda thinks this is a degenerative condition I had going on before I had the surgery. I was having this problem some but it has now worsened. He has set me up to see a neurologist

 

Permission granted the HFSA to post MVD Diary on website.
Ann Ehlen - Louisiana - October 21, 2001

 

Back to top

HFSA HOME

Home | Alternative Treatment Exp.| Ask The Docs | Bell's Palsy Exp. | Botox® Personal Exp. | Botox® Usage | Chat Room | Contact Us | Contribute | E-mail Archives | HFS Histories | Important Dates | Informational Pamphlet | Join Us | Links | Medical Advisory Board | Medical Terms | Members | Membership Summary | MVD Diaries | MVD Surgeries | Organizational Structure | Pictures | Site Map | Site Policy


Copyright © 2001, The Hemifacial Spasm Association (HFSA) Rev. 040901