Personal HFS History - Robin (Clark) Mayhew

I just found this group the end of November 2002 and it has been an absolute Godsend to me. I have suffered with HFS for about 7 years now and had never met anyone else that had even heard of it (except the Neurologist that diagnosed me... he had seen 2 in his career... including me). It is wonderful to know there are people out there who understand. With the HFSA you have friends who understand!

Mine started with a VERY MINOR twitch in the upper lid. It was a small annoyance for several weeks before I noticed that the lower lid was twitching right along with it. I don't remember how long it was, a matter of a few months, anyway, before I noticed a "tight" feeling in the cheek and began to see the corner of my lip pull up when I looked in the mirror during a spasm. I asked my General Practitioner about it at my next regular checkup visit after the Chiropractor I had been seeing for my neck had noticed it and tried some adjustments to no avail. She said I had to be referred for my insurance to cover the visit with the Neurologist and scheduled me for a CT Scan first. At the first appointment with the Neurologist, he informed me that a Cat Scan "did him no good" and he sent me for a MRI (so much for the insurance company saving themselves money by requiring that you get a referral). I had the MRI done and returned for a second visit. He did a few preliminary tests and then asked me to change into a gown and read a couple of pages in a medical book he left bookmarked for me. There it was. In black and white..."Hemifacial Spasm"...a name to put to this increasingly cursed condition. He scheduled me for some more tests. The third visit consisted of lying down on a gurney and having a technician insert long thin needles under the skin at various positions on my face and watch (what looked like a computer screen) a machine register my "twitches". The Doctor then took me into his office and explained that the tests had confirmed his diagnosis. I did have "Left Hemifacial Spasm". I thought, OK, we already pretty much KNEW that, now what do we do about it?" He then proceeded to tell me that I basically had four choices.

The first was "Brain Stem Surgery", (actually Microvascular Decompression Surgery (MVD) which he described as "putting a sponge between the facial and auditory nerves at the stem of the brain where the spinal cord connects". (I decided that sounded pretty radical and wasn't much of an option) The second was "Drugs, similar to those used for Epilepsy". (My stepdaughter was taking seizure medications and I knew that they could be tough on the Kidneys). The third was "Botox® Injections", which I thought sounded like trading one set of problems for another (I'd rather "twitch" than not be able to smile). Obviously I decided to do nothing. The only other info the Doctor offered was when he asked me if the "twitch" had progressed to my neck, yet. I asked what he meant, "Yet". He just replied, "You will". Other than this experience, that long ago, I have never had any other experience concerning the condition. I have no insurance, so I haven't sought any additional medical treatment. That was 1995, maybe?

I understand that everyone seems to have similar experiences, only different. Anyway, that was my scenario. Hope it gives a little information to others finding us. By the way, my neck has become involved just in the last week.

For anyone who suspects they might have HFS, I highly recommend that you do go to see a Neurologist. Also, don't be afraid to ask if the doctor is familiar with Hemifacial Spasm (HFS). The sooner you are diagnosed, the sooner you get to make an informed decision about treatment that is right for you. Had I had the info I do now, I would have had the MVD surgery back then (when I had insurance that would've helped with costs and before the "twitches" started leaving their signature on my face by way of funny little wrinkles that only showed up on the side with the spasms).

Know that there are a lot of people in this group that really do care what happens.

Permission granted the HFSA to post Personal HFS History on website.
Robin (Clark) Mayhew, December 13, 2002

 

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