Personal
Information
| Login: |
Carole |
| Name: |
Carole Atsma
|
| City: |
Abbotsford |
| State: |
British Columbia |
| Country: |
Canada |
| Gender: |
Female |
| Marital Status: |
Married |
| Occupation: |
Admin Assistant |
| Age at HFS Onset: |
52 |
| Side Affected: |
Left |
| Year of HFS Onset: |
2002 |
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Treatment History
Symptoms Experienced:
Tightness, spasms, pulling of eyebrow down and mouth up, partial eye closure, appearance of swelling around eye
Medications Tried: neurontin & diamox (no help) and now Sinemet with some success (less severe spasm)
Alternative Treatments Tried:
acupuncture
Tried Botox?:
Yes
Still Using Botox?:
yes
Botox Comments:
After the diagnosis changed to dystonia, and since Botox was also used for that, I decided to try it. First injections (11) in Mar 04 to area around eye, cheek, mouth and neck. Two wks of side effects that made me wonder which was worse, affliction or cure. Since have enjoyed much less spasm to face, eye stays OPEN (what a concept!), but has not helped my neck as much as hoped. Next appt late June 04. Somewhat concerned this relief time will be short as just yesterday I noticed a much stronger pull during spasm and it's only been 6 wks!! To this point though... Botox helps big time!
MVD?:
No
Number of MVD's:
Date of Last MVD:
,
Doctor's Name:
Facility MVD Performed:
Spasm Free?:
Any MVD Complications?:
Comments:
I am modifying today but will leave the original info below as it is still applicable. I only want to add that my diagnosis has now been changed to Dystonia (multi focal) and I understand that HFS is a form of. Unfortunately I appear to be somewhat "a-typical" in presentation and with the involvement of my leg becoming more and more of a concern, they are still investigating. I now frequently go through this site as well as the dystonia site. (end of modification)
I became ill May 2002 and am still fighting for confirmed diagnosis. At this point 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 cause. White matter lesions appear and many of the symptoms indicate MS and CNS vasculitis but as yet neither confirmed. Lyme disease also negative. I have read many of the member profiles and have not yet read one that sounds like mine. I am FINE first thing every morning and go downhill within the first few hrs with all symptoms more than apparent by mid pm at the latest. The spasms begin with the typical tics but progress quickly to being a constant ball of contracted muscle (tonus?). If anyone has any insight it would be SO appreciated. Muscle biopsy to be done Jul 4th and a cerebral angiogram on the horizon. Botox was suggested but since "this" has yet to be diagnosed completely I felt it was a bandaid that would only help cosmetically.. the least of my worries at the moment. Thank you for any insight that can be given.
Click here to see my "Personal HFS History".
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