Personal HFS History - Beverly N. Cox

My HFS began with a slight twitch in my left eye one afternoon while teaching a class of law enforcement officers at Ruidoso, NM in the Spring of 1990. I attributed the twitch, at first, to a lack of sleep the previous night. However, by the end of the day, I was feeling a mild twitch in my cheek, and I was having trouble annunciating words correctly. It felt like the corner of my mouth would not move in sync with the other side.

When I returned home to San Antonio, I became increasingly alarmed at the eye twitching and pulling sensation in my cheek. I sought medical advice from my family internist. He recommended I take Ativan and attributed it to my "stressful" job working for the U.S. Attorney, a Presidential political appointee. Needless to say, after a few weeks of taking the medication, I again visited my doctor. I told him that the medicine did nothing for my symptoms, and I did not like the way it made me feel. He suggested CT Scans to eliminate the possibility of anything more serious. CT Scans followed. All were negative. The doctor then recommended I consult with a neurologist. The first neurologist prescribed MRI's be done. They proved his theory that I, in fact, did have hemifacial spasm (HFS). I asked him to "show me" the compression areas on the MRI film to which he responded that the compression areas are so small that they are not even visible on the film. I questioned, then, his firm diagnosis. He, again, assured me that I had HFS in a very emphatic tone. I sought the services of another neurologist.

The second neurologist, a little more patient-friendly, reconfirmed the diagnosis after viewing my films. He gave me four options: live with it and do nothing; take oral medications; have Botox® injections; or MVD surgery -- the dreaded "brain" surgery. He referred me to a neurosurgeon in San Antonio who was touted to be "one of the top" neurosurgeons here.

My consult with the neurosurgeon to check out my options was rather quick. I took my films with me, and after having the neurosurgeon tell me: 1) this surgery (MVD) has only a 50% success rate; 2) permanent damage is probably already done to the nerve, so the percentage of success would be much less; and, 3) I could die, become a vegetable or have a stroke -- I opted for Botox® injections. He referred me. (Never once did he mention intra-operative monitoring of the hearing nerve, hearing loss, tinnitus, etc.)

My first visit with the Botox® doctor was uneventful. After asking me a few questions, he put three small injections at the bottom, top and side of my left eye. The needles were very small, and just a little prick was felt. I was happy. It lasted about six months. I went back for more Botox®, and this time, I stretched it out to A YEAR! But ..... when I went back, the doctor told me to not get too excited. He said that subsequent injections would not last that long -- and he was right. I started going every three months, and over the course of six years, endured treatment every 4-6 weeks with over 20 injection sites -- with less and less effectiveness and a lopsided face! On my last visit in December, 1996, the doctor wanted to inject my forehead and neck. And -- that's when I said, "enough is enough."

Performance of all aspects of my job as Law Enforcement Manager became very difficult. I became unable to continue public speaking and teaching. I had always been outgoing and friendly, but felt my whole persona changing. I became antisocial. I avoided my friends and people in general. I was reclusive. I thought that I had become a master of disguise hiding my spasms; however, I was fooling myself! Many people thought I had a minor stroke or Bell's Palsy. I explained to some of my friends what HFS was all about; however, because it is not normally physically painful, it is extremely difficult for even a spouse to really understand your innermost feelings and how this devastating affliction affects your whole life. I had learned to accept and cope with the wisecracks from cops about my winking and flirting with them. Not knowing a single sole in San Antonio or elsewhere with this condition, I felt very isolated, became a total recluse, lost my self-confidence, and at one time, even contemplated ending it all. Subsequently, I retired from the U.S. Department of Justice early (1995) because I was becoming severely depressed.

I began my quest for information and started searching the Internet one lonely evening in December, 1996. I merely typed in, "hemifacial spasm." Up popped the Harvard Guest Book, and the rest is history. I posted on the site, Kathi Smith immediately responded and put me in touch with Ken Williams in the DC area. Soon after, I "met" Frieda Jaffe from Florida. Together, we emailed several times daily, ultimately forming our first support group. They were my lifelines. They held my hand, gave me confidence and strength, but most of all, they extended their arms to hold me up whenever I fell down. They gave me a shoulder to lean on and the strength that I needed to cope with yet another HFS day.

During my Internet searches, one doctor's name in particular kept appearing: "Dr. Peter J. Jannetta and The Jannetta Procedure." Ken informed me he was on his way to Pittsburgh, PA, after in-depth research, to consult and subsequently schedule MVD with Dr. Jannetta in early May, 1997. I wanted so desperately to meet Ken in Pittsburgh for a personal visit and to be able to extend my hand to him following his surgery. However, my mother passed away on May 5, 1997, which precluded a trip at that time. I could not make a decision like "brain surgery" immediately following the devastating loss of my mother.

Ken's surgery was totally successful -- and he was quite an inspiration for me! I, thereafter, followed in Ken's footsteps. I traveled to Pittsburgh for a consult with Dr. Jannetta toward the end of May, was very impressed with his professionalism and above all, a MVD success rate of 94%, scheduled my MVD for June 19, 1997, awoke "SPASM FREE" and have remained so ever since with no post-op complications except for a short bout with Bell's Palsy. Needless to say, I affectionately refer to Dr. Jannetta as the "Godfather of MVD," and I will always consider him a miracle worker.


HEALTH INSURANCE: Fortunately, I have Federal Blue Cross/Blue Shield PPO health insurance. My Botox® injections were always covered, and all but about $800 of my MVD/Hospital stay/testing, etc., was covered.

For details of my Botox® use see my Personal Botox® Experience.

Permission granted the HFSA to post Personal HFS History on website.
Beverly N. Cox, September 10, 2001

 

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