Personal HFS History - Dana Helder
I began to have left eye twitching in 1998. I am a medication nurse at a Long Term Care facility and we have different doctors who come in weekly to see residents. I kept asking the doctors why my eye was twitching so much. Basically they all said it was stress, fatigue and that everyone gets them occasionally. As the twitching became worse and more frequent I began asking my family doctor, other doctors I saw for health problems when I couldn't see my family doctor. They all told me it was stress, told me to massage my eye, take up yoga relaxation techniques, wear sunglasses etc. Said it was considered a simple tic and that was one way my body reacted to stress.
As the HFS progressed it was more noticeable and rarely went away completely. About 3 years ago it started to affect my ability to read, especially at night, and was becoming quite noticeable. Sometimes I could feel them and sometimes not. I was very self conscious, which made it worse. I noticed in stressful situations it was much worse for example, my job. My doctor told me it would be a waste of time sending me to a neurologist, as there was nothing they could do.
Two years ago, I began having eye scrunching, spasms from my left eye across my cheek and to my nose and some numbness. Occasionally I have swelling and a dark circle under my eye. I finally insisted I wanted to see a neurologist. I live in a small town and the closest neurologist is in Winnipeg, 4 hours away. It was Fall 2004 and I got an appointment for January 2005, I was told I could wait up to a year for an appointment. In January 2005 I saw a neurologist in Winnipeg and he asked me a hundred questions. He talked about Botox injections but told me he couldn't give me a diagnosis until I had a MRI. So I went back to Winnipeg in March 2005 for the MRI. I waited until May 2006 for a follow-up appointment.
In May 2005, my neurologist had seen on my MRI an old fracture on my right frontal lobe area. He asked when this had happened and why didn't I tell him. I said it was 26 years ago and you didn't ask me. I told him my family doctor was totally against Botox injections. He told me because it was pathological in nature; Botox was not the answer now. He did not give me a diagnosis. He said that the scar tissue from my previous fracture had broken down and settled onto an artery causing it to compress a nerve and that it could be treated with medication, either Tegretol or Clobazam, anti-convulsants. I did ask if it could be surgically corrected and he told me there was a surgery but it was very risky and why would I even consider brain surgery when this could be controlled by medication. So of course I chose medication. Because of my job and the side-effects of these drugs I chose Clobazam as you only take it once a day and I could take it a bedtime, as side effects are drowsiness, affects your concentration etc. I started out initially at 10 mg. daily and now take 15 mg. as it does not work very well anymore. I did try 20 mg. but the side effects were worse. Side effects are fatigue, lack of concentration and memory, lack of co-ordination, difficulty urinating and lack of libido [bummer]. The side effects persist but not as bad on a lesser dose. I was getting fed up taking this medication and was going to make an appt with the neurologist again and something wonderful happened.
In November 2005 Andrew McCarthy, who used to be a neighbor, and friend of ours in town, had MVD surgery in Winnipeg with Dr. Anthony Kauffman. Andrew now lives in Espinola down east. When Andrew lived here he was diagnosed with HFS by a neurologist in Winnipeg and was taking Tegretol for it but told none of his friends. After he moved to Espinola he could no longer stand the medication and decided to have MVD surgery with Dr. Anthony Kauffman in Winnipeg. Andrew did not tell any of us that he had this condition or that he was having brain surgery in Winnipeg. Anyway, after Andrew's surgery he was bumped off his flight to go back home but could get a flight here. He called my sister and asked if he could stay for the weekend. Of course he had to tell them about his HFS and his MVD surgery. My sister listened and told him her sister has the same thing but her's was from a car accident. After Andrew left she called and told me everything Andrew had said. So I decided to call Andrew in Espinola and ask him some questions. He said basically what you are describing is what HFS is. He gave me Dr. Kauffman's nurse, Janice's phone #, and I called her. I told her about my condition, my neurologist etc. She told me she had never heard of this being caused by a car accident, especially 28 years ago prior. I had my MRI, health records and consultation records from my neurologist faxed to Dr. Kauffman. After he reviewed my case, I was diagnosed with HFS.
Andrew had given me the HFSA website and others to check out and I knew immediately if this was progressive, surgery would be my only choice and get rid of these damm pills. I am waiting for a MVD surgery date, was told it would probably be in April 2007. I wish it was tomorrow. I realize there are risks but the progression of this disease outweighs them by far. I think Andrew was bumped off this flight for a reason, fate, and think of him as my guardian angel. I will update you when I find out my surgery date!
Permission granted the HFSA to post Personal HFS History on website.
Dana Helder, January 21, 2007
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