Personal HFS History - Janice Karnes

My name is Janice Karnes and I was born in 1946. While no spring chicken, I am definitely too young to let HFS have its way with me. This is my story... I can get wordy, so be patient. I feel you need to know the whole me to know what happened.

I lived most of my life in Illinois. I was a farm wife for nearly 30 years and have four children. I am an only child and both of my parents had passed away - my mom just one year before our son Alan was killed in a farm accident on April 3, 1992. That awful Friday morning was the beginning of a downward spiral that continued for several years. Who can really totally recover from that kind of loss? We learn to go on, but the light isn't quite as bright as it once was. I am a very optimistic person - my glass is always half full, but this was tough.

Our farm and cattle business started to fall on hard times – mostly due to the dairy buyout in the mid 80’s, and it was difficult to remain on the farm. My husband could not bear to live on the farm, due to Alan’s death, so our family moved to Virginia hoping to start a new life. My husband had done quite a bit of cattle business in the Shenandoah Valley area of Virginia, so that’s where we went. We rented a house and cattle facility to sort and work cattle to send back to our Illinois farm. Our marriage was going through some serious problems. Our daughters were out of the nest, and our youngest son was 14 at that time.

I knew after only a couple of months into our Virginia life that our marriage was in real trouble. I guess our foundation was not strong enough to handle such devastation. We tried counseling, I went to a counselor myself, and stayed with the marriage two more years. In July of 1995, I went out on my own. I was scared to death - I had a job, but here I was, almost 49 years old, and on my own for the first time in my life. No family, except for my daughters, who still lived in Illinois and our 16-year old son who was very rebellious - who could blame him - his home life had fallen apart. He has had a very difficult time since the death of his brother and the break up of the family.

A year of counseling made me realize that the marriage was definitely over and I could make a go of it alone. Money was tight, but I had taken my stand and felt right doing it. (It's been almost 9 years since then, and I know now it was the right choice).

It was that summer of 1995 – two years into our life in Virginia – and a few months into our separation, that I first felt a little twitch in the inner corner of my right eye. This was just a few months after I had left my husband. I decided to go to the Doctor for a physical. He told me I was under too much stress - he gave me antidepressants. I couldn't disagree with him. I felt like I was going through a nightmare. I had married at 18 and had never been on my own before. I found my new life difficult and scary. He told me to stay on antidepressants until one year after the divorce was final - which I did. He put me on Zoloft. Zoloft did help my depression, but the twitches did not let up. The twitches started to work down my cheek, and started to pull in my mouth area. People were starting to notice I kept going back to my GP. He put me on Tegredal, and increased the dosage with every visit. After a year or so, he referred me to the University of Virginia in Charlottesville, Virginia (USA). Up until this time, I had no idea what was wrong with me, and still thought it was stress.

I felt that I was trying to crawl back among the living at 50 years old. I had lost my son, my marriage was over, and I felt completely alone. I thought all of the stress came out through the twitches on my face. I continued two more years with the Doctor in Charlottesville - a resident who followed the same path as my GP. He increased the dosage. I would say maybe it helped, and maybe it didn't. Bottom line - it didn't. He tried other types of antispasmodic medication - I don't remember the names. I tried those medications for only a brief period.

During that time, my friend Donna told me about something she had seen on TV. She said she was watching 20/20, and they were talking about Botox® injections for wrinkles and they said they also use it for facial spasms. I asked my doctor about it during my next visit. He said, "you don't want to go there", so I didn't say any more. When I went to him again on my next scheduled visit, he told me that he had talked to his colleagues about Botox®. One of the Doctors at UVA does Botox® injections for facial spasms. He referred me to Dr. Madeline Harrison. She saw me the next three years or so and started the injections. It would be trial and error She did have a diagnosis – I later saw her notes - but I didn’t ask her at the time. I just thought I had facial twitches, caused by stress. I did ask her after a year or so if there was some type of surgery to stop all of the motion- possibly some type of surgery to block the motion. She said there was a surgery, but it was brain surgery. She told me it was much too invasive for this type of problem - the risk was too high - lots of dangers and definitely not recommended. Like a good girl - (I thought) - I kept on with the injections.

In the fall of 2001, I bought my first computer. By that time I had met Ed, a wonderful man. He is a good man and we are together today and planning to marry soon. I have baggage, though, and it has taken me some time to get to where I am today. Divorce didn't come easy for me. It has taken me some years to give myself permission to be happy again.

I remember when I got that computer; I typed in "facial tics" and got something back. I got, what I thought, was a response from a doctor. I told my whole life story, just like I am now. That man turned out to be Homer from Circle of Friends. He pointed me in the right direction and I finally realized I had HFS. I took it all in just like a sponge. I couldn't believe that I finally had a name for this twitch - which by then had gone down to my mouth - I was a mess. From there I found the HFSA.

I remember when I first found out about the MVD surgery. It looked scary, but I read Dr. Jannetta's statistics - very encouraging. I told Dr. Harrison about Dr. Jannetta and gave her the information about the surgical procedure. She agreed that the surgery had come a long way. She said that she had heard of Dr. Jannetta. She said that if I decided to go ahead with the surgery, I would be her pioneer - her first HFS patient that would go through with the surgery. I told her that if I decided to have with the surgery that I would be proud to be her pioneer. That was the beginning of it. That particular conversation was in June of 2002 and I received my last Botox® injection at that time. I knew that I was beginning to prepare myself for MVD surgery. I knew that I would have to wait a year, so I kept in close contact with HFSA, taking everything in, learning more every day.

I asked Dr. Harrison to write to my insurance company and refer me to Dr. Jannetta. I was determined that Dr. Jannetta would be the surgeon for me; his statistics were outstanding. She wrote the letter and I was denied. The insurance company told me there were other Doctors in my network that could do the surgery. I live in Virginia, and Dr. Jannetta, of course, lives in Pittsburgh, PA - nearly 4 1/2 hours by car. By then, I had met Darlene Frederick via HFSA and she was also going through her insurance woes. She, Jack and the gang kept telling me not to give up. I became stronger and started to fight. I truly felt this was my chance to recapture my life.

My job as a front desk hotel manager puts me face to face with the public every day. I was going on with my life, but HFS had taken its toll. I wanted to hide at times, but my job wouldn't let me, and neither would HFSA. I really believe it was nothing short of a miracle. I was beginning to take charge of my life and it felt good.

I wrote letters to each of the doctors that the insurance company had listed. I asked them to give me statistics. How many surgeries had they done? What was their success rate? How did they do the surgery? By now I was knowledgeable about the surgery. I knew about the intraoperative monitoring device, etc.

I wrote a second letter to the insurance company and that was also denied. By now I had only one more chance. The third letter came from one of my friends at work. She was in charge of our employment insurance and was also the Employee Relations Manager. I'd known her since I first starting working back in 1993, so she knew how I had been suffering. I told her about my requests and denials with the insurance company. She offered to write to them on my behalf. I had not thought of her before, but now that she brought it up, it made perfect sense. She wrote that letter and the insurance company decided to allow me one more appeal, either in person, or over the phone with a panel of physicians. I decided to do it over the phone, so I could have all of my paperwork in front of me to refer to just in case I got rattled with the questions.

When the day finally arrived I was very calm. I was in contact every day with the HFSA Group. I had their support - they were the strength that I needed to get this done. I was in control and the questions were direct. The phone conversation lasted only 15 minutes or so. I had given it my best shot. Would it have been better to go to Richmond, Virginia and sit face to face? I couldn’t second-guess myself – I had no more chances.

And wouldn't you know - the insurance company accepted my appeal. I was given permission to have the surgery out of my network. I first thanked God for the strength to get me to this point in my life. I never thought that I would have the strength or courage to fight like I did but here I was - now facing brain surgery. Brain Surgery! What was I about to do? What would happen to me if I couldn't work? I was very worried about my work. Not working was not an option for me. There was nothing to fall back on - I had to work. It was nearly 9 years since that little twitch began and now I was about to undergo brain surgery. Except for a ruptured colon due to diverticulitus a few years earlier, my health was good. I started exercising and watching my diet to make sure I was the best I could be for the surgery. I read other HFSA histories to get some idea what I was about to go through. I never had second thoughts. I blocked all of the “what ifs” out of my mind. I was ready to go.

HFSA gets all of the credit for directing me to Dr. Jannetta. I remember that first day that I dabbled with the computer about that "facial tic". From that day I got to this day. I knew this was the "plan" for my life. There was no explanation - good or bad - this was the plan.

My first visit with Dr. Jannetta was at the time of the HFSA conference. My daughter, Penny, went with me. She flew in from Chicago and we met in Pittsburgh. She was a bit skeptical. What kind of a group was this? "What are you doing, Mother, contemplating brain surgery from a Dr. that you found on the Internet?" After our visit with Dr. Jannetta and later, after the conference, she had become more comfortable with the idea. She wasn't totally convinced, but was better. It took her a little longer to get comfortable with the idea that her mother was about to have brain surgery. My mind was set - there was no stopping me at that point. The consultation went very well, and I guess you could say that Drs. Jannetta and Casey "had me at hello". I found them very caring, and human. From that point on, I had no fear. I was confident that I was doing right by me.

I had that surgery with Dr. Jannetta on 09/25/03 and I'm pleased to say that I am "SPASM FREE". I woke up from the surgery spasm free and I have not had a twitch since. I returned to work after two weeks. I am truly blessed. My life is back - I am on my feet and have the strength go through life's adventures. I am stronger because of my HFS.

The last nine years have been a challenge. My good friends at HFSA were supportive and gave me the tools to make the decision on my own to have the surgery. The surgery may not be for everyone, but it was right for me. To smile again - a miracle. I will never take my smile for granted again. I am in my 58th year of my life and I plan to smile for many, many years.

 

Permission granted the HFSA to post Personal HFS History on website.
Janice Karnes, May 12, 2004

 

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