Personal HFS History - Olga Valle-Herr

My HFS affliction began about three years ago with twitching of the eye that would come and go. My general physician said it was nothing serious, to take two capsules daily of Vitamin B12. It actually seemed to help for awhile, but as time went by, I noticed my right cheek also twitching, so I was referred to a neurologist. He knew what it was right away, but still sent me for the usual tests to make sure there was no tumor or other problem. He was against the MVD, saying it was too risky, although he said that would be the only cure available. He sent me off with Kepra, which didn't work for long. Then it was Clorazepam, now it's Tegritol. I seem to become immune to the medications after a brief period of time of using them. I'm afraid I’ll end up at the Betty Ford Center if I keep on with all these drugs.

I still work with the public as a sales representative, so I began to feel self-conscious if the medication didn't work, so I'd either leave the store or go earlier in the mornings when my spasms were not yet doing their thing. Now I've missed work several times since my spasms are getting worse. I may end up losing my job, but at this time, I just want to get well. I saw my neurologist again, and he offered Botox® treatments. I said no because I was considering the surgery with Dr. Jannetta. I sent my medical history to Dr. J's office, and now I'm scheduled for my MVD on 05/20/04. I feel better knowing I've made a more determined decision and glad I did not go for the Botox® roller coaster, although I know it has helped many people. .

I'm in Southwest Texas and just hope my husband can be with me at the time of the operation as he runs his own business with no assistants. He is supportive although at the beginning he thought it was just a cosmetic thing that I should not worry about and that it would go away if I would not be so paranoid about it. As time went by, I showed him what this disorder could come to and how serious it was. Thank God he knows now it's not just a temporary pesty thing. .

I first thought I was having a stroke, Bell's Palsy, or a heart attack. I was reassured I had none of those, but the thought of living like a demon was inside my face for the rest of my life depressed me to no end. So now I'm just waiting for my MVD by the Jannetta team whom I have heard are THE BEST.

If any of you have any further advice for me or a question, please feel free to email me. Thanks to all of you for allowing me to open my heart and feelings. Only those of you who have experienced these horrible symptoms can know what I go through. I will remain positive that this big step is the right one to take.

Permission granted the HFSA to post Personal HFS History on website.
Olga Valle-Herr, March 20, 2005

 

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