- Powerful clenching of entire left side of face 2-3 times a day
- Eye forced shut, can only speak out of right side of mouth, nose distorted, cheek and neck tensed)
- Spasm usually lasts 30 sec-1 min; each episode is preceded and followed by twitching and lesser spasms    anywhere from 10 to 30 minutes
- Usually includes "bag of worms" rippling of lips, nose, cheek, neck and eye before/during/after spasm
- Moderate spasms 5-10 times a day
- Sometimes happens during sleep
- Constant dull ache above and behind left ear and under the jawline most of the way down my neck
- Just in the past couple of months, dull pain and fullness inside left ear and constant metallic taste (probably    unrelated to HFS)

Compared to many of the others I've read about on this site, I'm a relative newcomer to HFS. Although only officially diagnosed on 11/14/03, I've been suffering from HFS for about 1 ½ years. I appreciate everyone's willingness to post their stories, as this helped me research my symptoms and keep digging until I got to the bottom of it.

When my symptoms first appeared last year (at the age of 42), it was simply eye tics. Over a period of three or four months, the spasm got worse until they routinely included all around my eye (including lower forehead), cheek, lips, jaw, my neck down to the collarbone, and even my nose. I didn't even know I had muscles in my nose! The spasms are severe enough to force my eye shut and keep my lips closed on the left side, so I can only speak out of the right side of my mouth. While I only have severe spasms 2-3 times a day, I also have milder spasms 5-10 times a day. The spasms are often, but not always, preceded by the "bag of worms" rippling of my lips, nose, eye and neck. Needless to say, I've got the covering my face with my hand trick down pat. Finally, I have a constant dull ache in my inner ear and the muscles that clench - I presume that's tonus.

I initially put all this down to stress, as I was in a particularly difficult period both at work and home. Further contributing to the confusion was a severe toothache in one of my lower left rear molars. For a while I was seeing both an ENT and my dentist and endodontist to figure out what was going on. We decided at that point not to have a root canal as the tooth pain had subsided. My ENT had me get a MRI to look for possible tumors and referred me to a neurologist, who unfortunately was pretty inexperienced. His only recommendation was Botox®, with which he himself did not have any experience. It didn't sound like much help so I declined. If he had only known about HFS!

The spasms continued, and my ENT put me on a 1-week course of steroids, assuming that it was some local inflammation that was causing the spasms. The first course helped some so I did a second course. This helped even more - spasms went from 5-10/day to 2-3/week, and were milder. This continued for several months, and then the spasms returned full force. Back to the ENT for two more rounds of steroids, which had no effect this time. My tooth pain also returned, and so I contacted my endodontist. This time the nerve in the tooth was dead and I had a root canal. I discussed my spasms with the endodontist and his feeling was that they were neurological and unrelated to my tooth problems.

After a few weeks recovery from the root canal, which by this time I firmly believed was the underlying cause of the spasms (one branch of CN VII runs to those teeth), my symptoms were unchanged. At this time I *finally* started doing some research on the Web and found not only the HFS-ASSN but also the websites for Dr. Jannetta, the University of Manitoba, and others. It looked to me like I had a textbook case of HFS. So, armed with this new information, back to the ENT one more time. He discussed Botox® and anti-convulsant medications but didn't feel that they would be particularly effective in my case. His philosophy is to steer clear of invasive procedures if at all possible and so had been reticent about recommending surgery. Having run out of other options, he referred me to a different neurologist, Dr. Marilyn Newsom at the Boulder Medical Center.

I went to her office armed with a picture of face in full spasm, a chronology of events and a list of my symptoms. She listened to my story, gave me a physical examination and confirmed my self-diagnosis of HFS. I was all set to deluge her with the information I'd gotten from the Web, but she beat me to the punch at every turn. First she talked about how Botox® and the various anti-spasm medications are treatment options, but not cures. Her view of Botox® is that it's expensive, rarely covered by insurance and not particularly effective in cases like mine. The anti-convulsants are basically sedatives and so she felt that the impact they have on my normal function would also not be a good solution for me. That left living with it or surgery. She asked if I'd heard of Dr. Jannetta and the MVD procedure, which of course I had since visiting this website. She strongly recommended that I get a neurosurgeon who does a lot of MVD's, recommending Dr. Jannetta's team as well as another doctor in Salt Lake City. Regardless, it looks like I'll have to travel out of Colorado for the procedure. Afterwards I immediately contacted my insurance company (United Healthcare) and found out that Dr. Jannetta is in-network. What a blessing this was - I know that getting insurance to cover a specialist in cases like this is usually more traumatic than the procedure itself!

So, I am now starting the process of sending my records to Dr. Jannetta's office and seeing where we go from here....