Personal HFS History - Sylvia Harmon


Around the middle of the year in 1999 1 started having some twitching in my left eye. I was going through some stressful personal problems and concluded I was having the twitching because of the stress and not sleeping well. I worked out the problems, moved and life was good again. However, the twitches only got worse. I started to have some pressure in my left ear. Sometimes my left nostril would collapse. I would have burning in the top of my scalp on the left side. And my left eye was very dry. One day I started having a pulling or tugging from my left ear to all parts of the left side of my face and down into my neck. I made an appointment with my primary doctor and he sent me to the ER as he thought I had a stroke. After CAT Scans and other test it was determined I did not have a stroke and my doctor sent me to see a neurologist.

The neurologist spoke with me, asked me a few questions, did the hammer thing to my knee and said she didn't think I had anything seriously wrong. NOTE: My spasms were not bad that day. She said there is a condition that can cause this (but I don't think you have it) but if you want to see a neurologist in this building that specializes in neurological problems that involve the ear I will give you his name. I took his name and made an appointment. Within five minutes, he told me I had Hemifacial Spasm and explained this condition to me. He told me there were four options, medications, Botox injections, Microvascular Decompression surgery or to live with it.

I first opted to try medications but none of them helped. I tried Botox and the first treatment did nothing other than remove a few wrinkles. The second one left me unable to close my eye and the already dry eye got drier. Also, my mouth drooped. I looked worse than I did when I had the spasms and I hated having the injections. They were painful to me (I think he used too large of a needle). At this time brain surgery was not an option for me so I decided to live with HFS and make the best of it.

I went to three different opthamologists, the first one ignored me, the second put in tear ducts that really helped the dry eyes and the third one did extensive testing and told me there was nothing wrong with my eye and he suggested I have a MVD.

As timed passed, I began having trouble seeing well enough to drive and the pressure and ringing in my ear was driving me crazy. I also was beginning to have self esteem problems from the stares and the questions. I tried my best to deal with it, but I was going to lose my secondary insurance coverage soon and decided to go ahead and have the MVD surgery while I still had insurance.

I bought a computer, took a crash course from a friend and learned how to access HFSA. I could not believe all this knowledge was out there and most doctors were not aware of it. My hairdresser's mother (Deb Doyle) lives in my area and her daughter introduced us and she told me about her MVD and that she had it in Houston. This is only two hundred miles from home and better fit my budget than other doctors further away. I made an appointment with Dr. Parrish and had MVD surgery March 10, 2003.


Permission granted the HFSA to post Personal HFS History on website.
Sylvia Harmon, January 09, 2004

 

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