Personal HFS History - Gary Twing

My HFS started like it did for many; I first noticed an occasional "twitch" under my right eye. My friends said to ignore it, that "everyone gets a twitch occasionally, it would only last a couple of weeks and go away on it's own." Unfortunately, the barely noticeable twitch soon became more & more noticeable. I became very self-conscious about it, especially when talking (which seemed to bring it on).

I found myself turning my good, left, side towards the person I was talking to and trying to keep the conversation short. I'm, by nature, a fairly outgoing person & it wasn't my usual behavior. It made me feel out of control.

I put up with it until the twitch turned into spasms & started spreading down my cheek. I finally went to my family practitioner but he didn't know what was causing it. He referred me to a Neurologist who correctly diagnosed it immediately as HFS. He tried me on all the usual medications, Tegretol, Dilantin, and Baclofen, but none did anything. At least he was up front and told me that there was only a very slim chance that any of them would work.

My next stop was an MRI to check for a tumor. Everything checked out fine but I'll admit I was just a little disappointed. Not that I wanted a brain tumor but I just wanted to know what was happening to me and I wanted it fixed.

I discussed my options with my Neurologist who told me that the only cure for HFS was Microvascular Decompression Surgery (MVD) but that he would like me to try Botox® injections before I made up my mind. Although not a cure, he told me that the injections would control my spasms for four to six months at a time and were just about painless.

Well, I tried Botox®, and it did control my spasms ... for two months ... Painless? The eight injections were more painful than anything I have ever experienced. I've heard from several members who have told me that they were virtually painless for them, but personally, they felt like the doctor was slowly pushing an ice pick into my face. After my black eye faded away, I had to deal with an upper lip that drooped so much that I'd bite it when eating. It was numb like when you get a novocaine shot at the dentist.

The Botox® did its job, too good I guess. I soon learned not to smile because the right side of my face wouldn't move, it was like I had a stroke. My left side would smile just fine, what a sight! For someone who was already self-conscious - Botox® didn't improve matters any. Don't get me wrong... if you haven't tried Botox® I don't mean to discourage you because it works fine for many. Just not for me. I tried the injections once, and that's as far as I'll go with that option.

That leaves me with the last two options...living with it or MVD.

MVD is my choice, and as soon as I can get my HMO to approve it, I'll have it done, hopefully by Dr. Alksne here in So. California. Dr. Jannetta would be great but I've got to be a realist ...it will be easier to get an approval if I go to a "local" doctor that takes my insurance.

Why have I decided to have MVD? Because I don't want to be self-conscious anymore , I don't want to be embarrassed about my face contorting out of control, I want to be able to lay down and not have almost constant spasms when I close my eyes to go to sleep. I want to be normal. I know I've only had HFS for just a few years but I can't remember what it was like not to have it. HFS can literally take over your life. You live around "it", "it" changes your personality. Sure I try to ignore it, and I'm sure those who are around me all the time probably hardly notice it anymore. But I notice it and it bothers me. MVD surgery is a small price to pay to get my life back again.

As soon as I was initially diagnosed with HFS I went online looking for information. What a disappointment! We're the neglected few! I found some information but the true lack of it made me feel alone and depressed. It wasn't until I had made up my mind to push for MVD that I found this fantastic website. I wish I had found it long ago. I now knew that I wasn't alone...there were others out there talking about exactly what I was going through! I literally can't wait to read my email now & even though I almost know every word, every letter, on the website - I still go to it everyday for encouragement & support.

Permission granted the HFSA to post Personal HFS History on website.
Gary Twing, September 17, 2001

 

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