Personal HFS History - Carole Atsma

HFS became a part of my vocabulary in the summer of 2002 at the ripe 'ol age of 52. Although it is at this point only a portion of my health issues, it is becoming more and more of a concern and one that I am seriously considering dealing with separately and apart from the others involved. As of now I have the labels of Hemifacial Spasm, Trigeminal Neuralgia, Occipital Neuralgia and Ataxia. I have had countless tests (MRI, CT, Ultrasound, Spinal Tap, Evoked Response tests, etc) and have at this point still not pinpointed the underlying cause. White matter lesions appear and many of the symptoms indicate MS and CNS vasculitis but as yet neither confirmed. Lyme disease also negative. We are currently waiting for final results of muscle biopsy and blood work and I'm booked for a cervical spine MRI in December. I have read many of the member profiles and have not yet read one that sounds quite like mine as far as the daily progression of spasms. I am FINE first thing every morning and go downhill within the first few hours. By noon, or early p.m. at the latest, all symptoms are more than apparent.

As to the HFS, the spasms begin with the typical tics in the area below my eye (left sided) but progress quickly to being a constant ball of contracted muscle (tonus). The whole area from mid scalp down the whole side of the temple, forehead, eye, and cheek, towards mouth and into the neck is involved. Although spasm free, my "good" side also becomes involved with the eye opening wider and the eyebrow raising which adds to the distorted appearance. As my grandson most aptly asked "which eye is sick Nana...your big eye or your little eye?" Ah, the honesty of children. I also have a great deal of swelling/inflammation in the area between my collarbone and top of my shoulder. It comes and goes frequently throughout the day and sticks out in a ball the size of half an orange.

I'm at a loss as to what to do at this point. One of the neurologists I have seen suggested Botox but I chose not to go that route at that time feeling it was only a Band-Aid solution and wanted a more overall answer. I have been on countless medications (ex: Neurontin, Diamox, Tegrotol) and am currently on Topamax all to this point with no relief. MVD has not been suggested by any of the three specialists I have seen. I continue to read the daily digests faithfully and have found them to be a great source of information and support. I have just recently been in contact with Dr Kaufmann's office and plan to further explore MVD as a possible solution to at least a portion of my medical issues.

Thank you to all that take the time to contribute to this website. I look forward to being able to purchase the videotapes of the summer conference and plan to stay up to date with the happenings of the group. It is my hope that something I may have contributed will, at some point, help someone else with his or her experience with this dreaded condition.

Although I have not as yet done so either, I would like to suggest that more members contribute pictures to the site. I can't begin to tell you how wonderful it felt to see a mirror image of myself when I first went through the album! It was SO nice to see that I truly wasn't alone with this "look". For someone that has always been known for her smile and cheerfulness, it's very difficult to always see that distorted and grim look of despair....even when happy!

To be updated ... whenever there's something further to share. In the meantime I thank God for my family, friends, sunshine, HFSA, and the optimism and faith that someday my old normal life will return!

Cheerio

Permission granted the HFSA to post Personal HFS History on website.
Carole Atsma, October 09, 2003

 

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