Personal HFS History - Karen V.
My life has been a roller coaster. I have done things that other people have only read about. I do not say this to brag, but because it helps to define my life. I have flown hang gliders, surveyed caves, and lived on a sailboat for a year while home-schooling our two children. I've lived in six different states without ever joining the army, and have made a living in a myriad of assorted ways.
Those who have met me would agree that I am a high-energy person, but with that high energy comes a certain nervous energy. So, in October 2002 the occasional twitching on my right side seemed to be a nervous reaction to some of the change in my life. I had only lived in Florida for 3 years, and started out teaching math at the local high school. I love working with kids, but do not particularly like the bureaucracy and the low pay, so I had just gotten my real estate license and had signed on with a large real estate firm. Since I had sold real estate for close to a decade in a previous life (it actually just felt like a previous life) when we lived in New Mexico I did not think this change should be so stressful. But my doctor and family had me convinced "it was just nerves" and I probably just needed to work out more/stop drinking coffee/relax.
My daughter had just turned 16, and like many teenagers anything I did embarrassed her, but THIS...this was the ultimate embarrassment. Every time I twitched or winked she would yell at me. "Mom, you're twitching again, stop it!" Her friends were asking her if I had Tourette's disease.
Although I had started out my Florida real estate career feeling enthusiastic and optimistic, my morale was slowly twitching away. One day at the gym some guy laughed when I winked, and quickly looked away. I noticed that one of the male trainers whom I had been friendly with started avoiding me. I also noticed that my winking was becoming more pronounced when I worked out. I stopped going to the gym. Fortunately I smashed my finger in a door. Yes, this is fortunate, because while treating my finger, my primary care physician noticed that my winking had gotten worse. He referred me to a neurologist.
Here is where I am truly fortunate. Dr. Robin Kass thoroughly examined me and quite confidently diagnosed me with Hemifacial Spasm. She ordered a MRI and some blood work, just to rule out anything else. She wrote out the name of the condition along with other terms like Dystonia so I could explore them on the Internet. She spoke with me briefly about Botox® and brain surgery.
Although she spent quite a bit of time with me I walked away with what I wanted to hear. I wanted a quick fix and there was no way in the world I was ready for that fix to be BRAIN SURGERY. Those are scary words, and at the time my reaction was "no way am I going to have brain surgery over a stupid wink". What she did point out (and I honestly was not aware of this at that time) was that my wink was really more of a spasm. My cheek had already started pulling, and my lip pulled up a little also.
I went home and hit the Internet. I found a few good sites and looked them over. Good. Her diagnosis looked right on. And much of the literature suggested Botox® was the clear-cut way of handling this. I did understand that it was temporary and that I would need to go back every 3 to 4 months. I do not know where I got this from because she certainly did not suggest this, but somehow I convinced myself that this condition would some day go away. Poof. Again, we hear or read what we want to hear.
I was able to make an appointment with a good ophthalmologist, and anxiously awaited Botox® day. Meanwhile, I was not making any money in real estate, we were getting sued from an old business situation and my daughter didn't want to be seen with me. (She did feel guilty when she heard it was not a "nervous condition".) I made an appointment with a psychologist, and started taking Prozac. By the time I was able to see the ophthalmologist the Prozac had started doing its job. I started being able to laugh at life again. The doc's appointment went okay, although I had expected immediate results. I would have to wait 3 to 5 days for the Botox® to take effect. Okay, I can handle this. I remember calling my brother-in-law on my cell phone on the drive home and laughing about my first Botox® cocktail. He had suffered a brain injury a couple of years earlier and was taking Zoloft, partially for neurological reasons. We joked about anti-depressants and getting older. It was going to be okay.
Five days later my face was still twitching away, but my eye was incredibly dry and painful. I saw the ophthalmologist, who suggested that I come back in about a week. His approach was conservative, which I liked, and he worked with me as a partner in trying to find the right balance of Botox® and reduced twitching, and that Bell's Palsy kind of droop. During my follow up appointment the next week he administered more Botox® in my cheek and nose area. I was to see him again in another week to see the results.
My full Botox® experience is documented in another spot (see link below), so I will not rehash everything. I will summarize to say that I had no problem with the half smile and partial paralysis, but I did not feel that the spasms were controlled. They were not as visible to everyone else, but I still felt the underlying pull. Only now my face just wanted to spasm. Strange. My HFS eye was still very dry, I developed two bouts of conjunctivitis, I could not go anywhere without dark shades because I was photo sensitive, I experienced some double vision, could not drive around for more than about 30 minutes without feeling completely exhausted, and I was going to have to do this again in 3 to 4 months. Well, at least I was still on Prozac.
It was a week before Easter in 2003 when I had a follow up appointment with my neurologist, Dr. Kass. Prozac or no Prozac I broke down and cried. She held my hand, looked me in the eye and said something that I will always respect. She explained that she was "just a community neurologist" (yes, her words exactly), and not an expert on HFS. She vowed that we would find something else, but admitted that she would have to do some research. Her suggestions were: Tegretol, trying another doctor for Botox®, perhaps one down at a prestigious eye institute in Miami, a referral to the Dystonia clinic in Miami, and more research on the internet. She copied a couple of pages from her neuro textbook and promised we would talk again in a couple of days.
THAT NIGHT I DISCOVERED HFSA AND COF! I had found both sites in my initial search for HFS, but I wasn't ready to absorb it all. That night I was ready. I remember pouring over the MVD diaries, all the profiles, and emailing at least a dozen people. I cried, but this time those tears expressed joy, frustration, anger, and acceptance. For the next 24 hours I did little except read about OTHER PEOPLE WITH THE SAME THING I HAVE. Wow. I was no longer alone. I knew right then that I was going to have surgery. You will notice that one emotion I did not mention is fear. To this day I have felt no fear about the surgery or my decision. The only thing I had to figure out was who, and there was one name that came up again and again and again. Dr. Jannetta.
I am writing this in the wee early hours of October 17,2003 and I have 48 more days before my scheduled MVD in Pittsburgh with, you guessed it, Dr. Jannetta. While the decision to have surgery came very easily to me, it was not until July that I knew Dr. Jannetta would be my surgeon. Since I live in Florida I had originally considered Shands Hospital in Gainesville, which is a leading neurological center. Dr. Rhoton is a very well respected neurosurgeon there, but he was no longer performing MVD for HFS. Being semi-retired he now only performs the procedure for Trigeminal Neuralgia. The one constant in my plans for surgery is that my sister who happens to be a nurse living in Philadelphia will be my caregiver. We considered her coming down to Florida, but it was just as easy for me to go to Pittsburgh and she could drive. We figured she would drive her car there and I would rent a suite for the two of us for a week.
The deciding factor in choosing Dr. J was meeting him at the conference in Pittsburgh this past summer. Everything I have read about him from other HFS members is true. And his cohort and partner, Dr. Casey, impressed me as well. If either of these men find that the doctor gig gets old they can always get a job as a stand up comic. Seinfeld, watch out.
I have been counting down the days, waiting for surgery since, oh, day 120. It will soon be a reality. Meeting others who are experiencing the same thing or who have experienced this condition has been my lifeline. I have hit the computer at three in the morning when my spasms kept me awake, yelling at the world and wanting to rip open my face. In the morning I got a dozen emails reassuring me to hang in there. During my waiting period my 11-year-old son was diagnosed with juvenile arthritis and my HFS friends wrote to me for support. I have laughed and cried and sometimes made a fool out of myself, but I have always come back to this group for support.
I would like to add that I have gone inactive with my real estate license. Unfortunately, we are in a society where appearances do matter. I did not feel comfortable working with strangers and in the public with my degree of spasm. I give others credit if they are able to do that, but it just didn't work for me. I quit the gym and have tried working out at home. I do some exercise, but I find that anything aerobic makes the spasms much worse. As my pulse goes up, my spasms increase. I do not like it, Sam I am. Much to my dismay, my husband has not been at all supportive of my condition or my decision to have MVD. I do not understand his reaction, but it has been a tremendous strain on our marriage. For better or worse are some powerful words, and I do not feel like he is there for the worse. After 23 years of marriage I do not know if we will see 24 together. I will deal with that after I recover. I plan to start selling real estate again some time next spring. Fortunately we have some money saved, and I am trying to keep expenses down. I spend a great deal of my day gardening, which has been therapeutic for me. I have had to learn all about Florida gardening, planting tropical plants and natives, establishing butterfly and bird gardens, orchids, old English roses and an eclectic blend of perennials. Life is good.
I am not a religious person, per se. I know others have asked for prayers, but I get my strength from people. I have a condition which is a royal pain in the butt, but at least it is not life threatening. All I need is a little hole in my head, an experienced surgeon to stick some Velcro in there, and ta da...new again. Considering recovery time, my whole HFS experience will be a mere year and a half...nothing compared to some of our members. Maybe I will come out of this a better person who appreciates the important things in life---flowers, friends, and family. I am confident of two things: some day I will be spasm free, and I will be there for anyone else who needs the support.