Botox® Experiences - Beverly N. Cox

After my HFS diagnosis in 1990, being very unknowledgeable and given only two options, surgery or Botox®, I very quickly opted for the "harmless" injections, although I knew nothing of the possible, permanent, long-term effects it may have on my facial nerve/muscle. I wanted relief, and I wanted it fast! I had a very demanding job, and I did not have time to drown in self-pity.

I scheduled my appointment and went in for my first Botox® injections. I found the doctor seemingly knowledgeable about where to locate them, which he did very gently and without pain - merely the sensation of a few pinpricks. The three injections were placed above, under and at the corner of my left eye. .

I immediately found that wearing contacts (and eyelashes) became a feat of determination every day. My eye teared continually with the contacts in place. Determined, I endured the tearing and scratchy feeling for at least two weeks post injection. The scratchy feeling subsided thereafter, and I continued wearing my contacts. The eyelashes quickly became a thing of the past!

I was ecstatic with the first injections. I felt pulling in my cheek, but it seemed the Botox® helped, to some degree. Life became bearable. I was able to continue my stressful job although the relief was very temporary. I returned in six months for additional injections. They seemed to be more effective than the first three, and I stretched my next visit to one year! My Federal Blue Cross/Blue Shield PPO paid in full for the injections. I was a happy camper!

That happiness came to a screeching halt very shortly thereafter. My injections then became a regular part of my life every three to six months. Over the course of the subsequent six years, my visits to the doctor became more and more frequent, and the Botox® became less and less effective. The injection sites, over the course of six years, progressed from three to approximately 20 - around my eye, across my cheek to my nose, down the side of my cheek, across to my mouth, and under and over my mouth.

The injections helped make life tolerable living with HFS for a couple of years. It was to be temporary. In subsequent years, my battle with HFS became very intense. It controlled my every waking moment. I could no longer read or do legal research comfortably even with the injections. Although the Botox® helped minimize the intense spasms, my face became very lopsided, my smile was crooked, and one eye was open wider than the other at all times. I could not close my left eye independently anymore, and I was winking on an almost-constant basis as the spasms came and went every 30 - 40 seconds. Not being able to close my eye independently meant, too, that I had to relearn how to use such things as a camera, among other things. I became very reclusive and hid behind sunglasses, or in other situations, my hand.

It was at the point when the doctor was injecting at least 20 sites every four to six weeks that he alluded that he thought better results would be achieved if he injected my forehead and neck! That is when I said to myself, "Enough is enough!"

I had reached my limit. I had bottomed out, was severely depressed, had become antisocial and extremely reclusive - exactly opposite of my normal personality. It was time to do something to reclaim my life!

Knowing not another person diagnosed with HFS with whom I could relate and feeling very alone in my battle, I started searching the Internet more seriously. Everywhere I surfed, I kept seeing one name - Jannetta. Peter J. Jannetta - The Jannetta Procedure! I did some research on Dr. Peter J. Jannetta at UPMC and found that he had pioneered the cure for HFS, and it was called Microvascular Decompression Surgery. He had a very high success rate - in the high 90% range and had over 20 years experience in the highly technical procedure. Surgery was becoming more and more a reality for me.

One lonely evening while surfing, I landed upon the Harvard Guest Book, posted a message stating my dilemma, a lady in Oregon (Kathi Smith) immediately replied and put me in touch with Ken Williams in Maryland. Ken, being a computer person, provided me with his in-depth research on HFS, MVD and Dr. Jannetta. It did not take long thereafter to make the decision that I was headed to Pittsburgh for MVD. I became spasm free on June 19, 1997, and remain so today.

For details of my HFS experience see my Personal HFS History.

Permission granted the HFSA to post Botox® Experience on website.
Beverly N. Cox, October 13, 2001

 

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