Personal HFS History - Nancy Gevels

My HFS started in 1999 when I was 31 years old. I first noticed an occasional twitch under my right eye, but unfortunately, the barely noticeable twitch soon became more and more noticeable. I lost my self-confidence, especially when talking (which seemed to bring it on). After a while it progressed to the upper eyelid.

I first started researching it in 2001, which was a bad experience. Without knowing the exact name, I learned its cause (a blood vessel compressing a nerve) and was given three choices: use medications, live with it, or MVD. I chose medications, which I never took. The neurosurgeon first had to call a colleague for advice before prescribing a medication. He said that, when growing older (I was 34 meanwhile), everything slackens. He told me that, if I would have a car accident, this could solve the problem. Maybe I could break my neck? He also told me it could become so bad that I even wouldn’t want to live with it anymore. So, for him there was only one solution and that was an MVD. But, he had no experience.

I went to another neurosurgeon for a second opinion. This one gave me four choices: medications, Botox, live with it or MVD. Again, I choose for the medication. I tried for a few days, but I felt bad about it. During my visit we had talked about Botox and I called him to get an address. First I got 10 units of Botox, without any result. It was the first time she applied this for treating HFS. For a while I decided to learn to live with it. It was embarrassing and annoying, but it was only around my eye.

In 2002 the twitching was continuous. It started affecting my sleep. When I looked in the mirror during a spasm, I saw the corner of my lip pull up. I went to see another neurologist. Only then I heard the name of what I had, Hemifacial Spasm (HFS).

Meanwhile I had 6 Botox injections of 29 units. Botox only controlled the spasms from being visible. I still felt the spasms and the bouncing in my ear. I had pain above the right ear, on top of the head on the right side, and between the eyebrows. Sometimes it was worse on the eye, sometimes on the mouth. The spasms increased due to stress and thinking about it. It comes into everything because it’s always there. I found myself turning my healthy left side towards the person I was talking to and trying to keep the conversation short. I lost concentration. It made me feel out of control. I’ve only had HFS for 5 years, but I can’t remember how it was before. HFS can literally take over your life. You live around it; it changes your personality. Sure, I tried to ignore it, and I’m sure that people who were around me all the time hardly noticed it. But I noticed it and it bothered me.

Once I had a drooping eyelid from the Botox during 14 days. Over the time I tried kinesiotherapy, osteopathy and acupuncture. Finally, I decided to look for someone who could do the MVD. In May 2003 I saw neurosurgeon #4. For the second time I had a MRI, the result was negative. We spoke about an MVD. I asked about his experience with this surgery and learned he had only operated on one (1) MVD patient and after surgery the patient was deaf. He wanted to make a contract, because he didn’t monitor when operating. So he could not see whether he was damaging the nerves.

The spasms became visible from above the eyebrow down to the neck. So again, I was seeing another neurosurgeon. He referred me to Dr. De Waele who learned about it from Dr. Jannetta. Dr. De Waele is also a good friend of Dr. Fukushima (who did more than 4500 MVD’s).

I had my MVD done by Dr L. De Waele on April, 08, 2004 at the AZ Sint-Lucas at Ghent in Belgium and I’m 100 % "SPASM FREE".

Permission granted the HFSA to post Personal HFS History on website.
Nancy Gevels, May 10, 2004

 

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