Personal HFS History - Shannon Jones

About 2 years ago, when I was 29, my left eye starting twitching. After a month or two had passed, and it did not stop, I went to my family Doctor. More specifically to a physician's assistant since that was the only appointment I could get within about a 6-week period. The physician's assistant decided I had an overactive nerve, and treated me with a muscle relaxant. It helped quiet the twitch down somewhat, but the only real relief I received was because the muscle relaxants made me sleepy and not care anymore.

After completing the muscle relaxant therapy, with no real benefit, I returned to the office, to be treated by a different physician's assistant. This time, they decided to try Neurontin instead. I believe it was 300 mg, 3 times a day. This did absolutely nothing to solve my problems.

During yet a third visit, they concluded that there was nothing that could be done with me, and so I went home with a twitching eye. I started to notice that the twitching was getting worse, and noticed a link to when I was stressed or tired more than normal. In an effort to get my blood pressure down, I more or less decided to go caffeine free, to see if it would make things better. This seemed to lessen the attacks somewhat, but did not get rid of them altogether. I started hunting around online, and unfortunately, did not find my way to any HFS information, but was doing general websearches for things like eye twitch, etc. I found quite a lot of information on dental work, regarding amalgam and mercury poisoning. I tried to figure out if I could link the start of the twitching to some dental work I had done, but from my recollection, I was already twitching shortly before I had a cracked filling replaced. I have quite a few fillings, darn youthful indiscretions, and was somewhat concerned that I might have been getting some slow buildup of mercury exposure. I called my Dentist about it, but being a good ADA spokesperson, he would not admit to any danger of mercury poisoning.

So, I basically just gave up and lived with the twitching for about a year. I switched family doctors finally, after my company insurance changed from a POS to a PPO plan, which was miraculous. I discussed the twitch with my new doctor, and she said she would have prescribed the muscle relaxants and neural suppressants that I had already taken, and she could not think of much more to do, so I lived with it for another 6 months or so. Over the year and a half of no treatment, the twitches became a continuous flutter in my left eye, with people starting to notice that my left eye never opens up all the way, always staying about 1/2 closed. The twitches also started to migrate down my face and currently spasm from the corner of my eye to below my bottom lip. They are not too bad, having slight twitches throughout the day, with larger spasm as my stress level goes up. I stay contracted in the cheek muscles from time to time, which is not painful, but it is bothersome. More or less, I am used to them, but am somewhat concerned that they might be career limiting, in that I get a lot of strange looks from people in meetings, etc.

Finally, I got sick of them recently and went back to my family doctor to see what the next step could be, if any. She referred me to a neurologist, who after 30 minutes of making me walk around barefoot and other assorted tests, decided that I had Hemifacial Spasms. Finally, I knew what it was. He basically said, we can treat you with medicine or Botox® injections, but sounded confident that we may want to try medications first. He requested an MRI to rule out the other compression causes, such as tumors, and it came back negative. So, he wrote his findings back to my family doctor. Armed with the words "Hemifacial spasm", I was finally able to find a community of people online, and a wealth of information. I read literally everything I could get my hands on regarding this, and went back to my family doctor.

My family doctor sat down with me and basically said, we can try meds, or Botox®, but we do not know what causes these things, and so probably can not offer any permanent solutions. I indicated that I was pretty sure that the cause was known, and there was a surgical option. I told her that I had done meds, and while we could pursue higher doses, they were not likely to succeed. I therefore requested a referral for Botox® injections, which is through an ENT here, not the neurologist I had previously seen. I finally went to see the ENT and he seemed glad that I had heard about MVD's. We talked briefly about Botox® and he more or less said, I have referred people to Pennsylvania and North Carolina for the surgery and given my age, would highly recommend I go have it done. I basically said, sounds great, but I need some short term help, I need to stop twitching for a while, and scheduled some Botox® injections. My first round was to be on Feb 20, 2002, but since then, I read an abstract from Dr. Kassam that shows a better chance of recovery if you have never had the shots. I more or less decided that I have lived with the twitches this long, and can live with them until I can get in for surgery, which I know I will get sooner or later anyway. I have since cancelled my scheduled injections, and am in the process of getting set up for the surgery.

During my searching, I found a website at Skull Base Institute, at Cedars-Sinai. I am not sure how their procedure compares to the one in Pennsylvania, but it sounded like they put a smaller hole in your skull, which sounded somewhat better. Having searched through my insurance links though, I think I am going to try for Dr. Kassam, as he is listed as a neurosurgeon, whereas the Doctors at the Skull Base Institute are listed as general doctors. I am sure they are specialists as well, but I am more familiar with the Pittsburgh area, having gone to school at West Virginia University. Nothing is set up yet, but I plan on scheduling an appointment with my ENT in a week or two, to get the referral started. I am not sure how the scheduling works out, but if I am accepted for the surgery, and if they will work with me on a schedule, I will probably try to have it done later this summer, or early in the fall.

I absolutely love getting the group e-mails, knowing there are other people out there that have dealt with or are dealing with the same issue that I am.

Hope to hear more from everyone soon, and when I get my surgery, I will definitely keep a diary.

Keep on twitchin,

Permission granted the HFSA to post Personal HFS History on website.
Shannon Jones, February 20, 2002

 

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