I believe I first noticed the slight twitch in my left eye in 1997 which I attributed to lack
of sleep since I would rarely get more than five hours sleep per night. Over a period of time
I noticed that the twitching started to include the left cheek, corner of my mouth and
eventually my chin.
I first mentioned this problem to my Optometrist on 12/07/98 thinking it was an eye problem.
I asked if he thought it might be Blepharospasm, which my father suffered from, and he
indicated that it might be Bells Palsy and suggested I see a Neurologist.
On 01/15/99, I went to a Neurologist (Albert D. Wagman, MD, Abington Neurological Associates Suite 401, 1245 Highland Avenue, Abington, PA 19001) who, following an exam and testing in his office, indicated that he believed I had Hemifacial Spasm, and not Blepharospasm, since only one side of the face was affected. He sent me for Nerve Conduction studies, an EMG and a MRI. Conclusion, no tumors but confirmation of Left Hemifacial Spasm.
In his report back to my primary care physician, he wrote in part "… the presence of
synkinesias indicate that the patient has had the condition for a long period of time in order to get muscle redirection". So apparently I had HFS for at least a few years prior to seeking diagnosis and treatment.
The Neurologist then prescribed Neurontin, starting on 01/29/99, and over a period of time the dosage was continually increased with no positive results.
Around the same time, thanks to the Internet, I found the Benign Essential Blepharospasm
Research Foundation and then the Circle of Friends. Through these resources I learned about
Botox® injections and when the Neurontin failed to work, I was referred to an Opthalmologist
who specialized in eye plastic surgery (Allan E. Wulc, M.D., F.A.C.S, Abington Hospital, Suite 503, 1245 Highland Avenue, Abington, PA 19001, Telephone: 215.886.5400) to begin Botox® injections.
On 04/27/99, I was injected with 32.5 units of Botox® with only minimal improvement. On
05/06/99 I was injected again, but although the spasms were lessened, they did not completely
go away and they continued to be annoying.
During a visit on 05/25/99, we discussed Microvascular Decompression Surgery (MVD) and Dr. Wulc concured with my thoughts that MVD was the appropriate next step since I was only 54,
and without MVD surgery, would have to live with HFS for the rest of my life. He began to
give me the names of some local (Philadelphia area) Neurosurgeons, but I told him that from
my research, Dr. Peter J. Jannetta was "The Man", and that's who I preferred. He had heard of
Dr. Jannetta and consequently he had no objections so in late May 1999, he sent a letter to my Primary Care Physician suggesting the surgery.
Due to health problems in the family, I didn't pursue the quest for Aetna US Healthcare (my
HMO medical provider) approval to go out of network for the MVD surgery until October 1999.
Well, they approved the surgery, but only by a doctor at The Hospital of the University of
Pennsylvania, in Philadelphia, PA or by a doctor in Washington D.C. Although I had no reason
to doubt the expertise of these individuals, I had read a lot about Dr. Jannetta and wanted
him to do the surgery. If this was surgery on my arm, leg, etc., perhaps I'd be more flexible, but not where my head was involved.
Well, due to serious medical problems my father was experiencing, my pursuit of MVD was again
put on the back burner.
When I again began to pursue getting Aetna US Healthcare approval for MVD surgery by Dr,
Jannetta, I learned that he was at Allegheny General Hospital in Pittsburgh, PA. Since he
was the surgeon I wanted in the first place, I took this as a sign that I should again try for him. I began corresponding with him by email on 07/24/00, and with the help of his staff and Dr. J., near the end of August, 2000 Aetna US Healthcare approved the surgery.
On Wednesday, 10/18/00, I had successful MVD surgery with Dr. Peter J. Jannetta at Allegheny
General Hospital in Pittsburgh, PA and I'm now "SPASM FREE".
For details of my Botox® use see my Personal Botox® Experience.
For details of my MVD surgeries see my MVD Diary's.
Permission granted the HFSA to post Personal HFS History on website.
Jack O'Donnell, September 1, 2001