That same week, also I felt some flutters in my upper left cheek. “Gee, this is strange,” I thought; “I’ve never heard of twitching in the cheek.”
The flutters continued; meanwhile, I had treatment for a broken tooth that was only discovered when I casually called the dentist’s office because that tooth “felt different” when I flossed. Both my dentist and I were surprised that I had neither pain nor any heat/cold sensitivity in the tooth. “Gee, this is strange,” I thought; “maybe the flutters in my cheek are a variant response to the broken tooth – instead of pain, I have flutters.” After the tooth was repaired, and while it was still healing, I had sensitivity in the tooth AND flutters in my cheek when drinking hot or cold liquids.
The tooth healed, the flutters remained. On March 31, 2007 I was singing in a concert with my symphony chorus, when I felt a little twitch in my lips. “Gee, this is getting REALLY strange,” I thought; “maybe I should check this out.”
I started doing Google searches, fully expecting to find a short, dismissive discussion of facial twitching, like having hiccups for three months or five years or something. To my great surprise, I never found anything like that. All I found was websites that discussed something called Hemifacial Spasm. The very first description I found was an exact description of what I had been experiencing for the previous weeks – I was utterly floored. I had been a nurse for 30 years, I had learned about trigeminal neuralgia (a.k.a. tic doloreux) and Bell’s palsy, but never, ever had I heard of anything like HFS.
There was one significant difference between my experience and what I read on the websites: what the sites described as happening “gradually” or “over several months” was happening to me over a matter of a few weeks. I saw my primary care physician in mid-April 2007. She ran some lab tests and said if the twitching didn’t clear up, we could try some medications, and if the medications didn’t work, we would get a consult with a Neurologist.
I AM LUCKY ENOUGH TO GET AN EARLY DIAGNOSIS:
For want of anything better to do about them, I began to log the spasms and journal with my sense of grief about what was happening to my face. I looked at the pictures on the HFSA site, and then looked away. Was I really going to look like that? The answer was "Yes, and soon." In late June 2007 I had my first “cheek being ripped off my face” spasm, and in mid-July 2007 I had my first full-face tonus with significant distortion in my mouth. These were truly frightening. By then, of course, my friends could no longer say they couldn’t see the spasms, but I always felt the visual appearance could never do justice to just how strong they were, or how tingly my face felt most of the time.
I remember writing in my journal, “I now look like the pictures I couldn’t look at”, submitted pictures to the HFSA website.
SCHEDULED FOR SURGERY:
I do have days with relatively fewer spasms, but many days I have very strong spasms almost all the time, except when I am eating/drinking, teaching, or singing – those activities seem to temporarily “trump” the spasms, and afterwards my face goes wild. I am currently beginning to have more spasms while speaking, even during class. Other triggers are driving, working on the computer, watching TV, reading, and shopping. Sometimes my mouth is so tight that I feel as if I am choking. I have also developed a continuous buzzing in my head. I have tension headaches from the forehead spasms. Something pulls on my ears and causes a piercing pain there. The facial muscles on the affected side get sore from all the spasms, and the ones on the other side get sore from being stretched so much.
I am counting the days to December 14, 2007.
By May 2007 the twitches were more frequent and felt stronger (although still barely visible), and were spreading to the corner of my mouth and into my neck, so I asked my Primary Care Physician to have the neurology consult sooner rather than later. I was diagnosed on May 31, 2007 and had a normal MRI/MRA on June 13, 2007. The neurologist recommended Botox as the “gold standard” for HFS treatment, but I didn’t feel that I needed any treatment at that time. My friends insisted they couldn’t see any twitching, and by then I had discovered the Hemifacial Spasm Association (HFSA) and wanted to seriously consider surgery as a first choice of treatment. I signed up for the HFSA in mid-June 2007 and felt as if my life had profoundly changed. 
I used the links at the HFSA website to discover that Massachusetts General Hospital/Harvard Medical School has a neurosurgeon with excellent MVD credentials. Dr. Fred Barker did a year’s fellowship with Dr. Jannetta, published with him, and is now the Director of the Cranial Base Center at MGH. I met Dr. Barker in mid-July 2007 and have surgery scheduled for December 14, 2007. Truly a blessing, to have someone with his credentials so near, and covered by my insurance.
Permission granted the HFSA to post Personal HFS History on website.
Ann Riggs, October 25, 2007