What you’re ‘Meant to be’?
The 50’s are everything you’re ‘Meant to be’! At least that’s what Oprah Winfrey claims, but not true for someone suffering from ST. Here I was, in my early 50’s and feeling like my life was not worth anything. My head was tilting, my neck was in constant pain and the head tremors made life almost unbearable. Simple daily tasks were no longer just nagging chores, but instead had become difficult and depressing activities. How can you drink a glass of water, put on make-up or read your email when your head is shaking a mile a minute?
Listening to ten years of “It’s all in your head” or “There isn’t anything physically wrong with you” is more than enough to depress anyone. Sure, there were days when my optimistic side would persevere, but most of the time all I could do is hide in my house, finding relief only in sleep or an occasional drink (or two). But I was determined to find that elusive answer.. “What is wrong with me?”
Finally that answer came during a visit with my neurologist. No longer was my diagnosis a possible chemical imbalance in my brain, but something I had never heard of, Spasmodic Torticollis. It was a relief to hear a diagnosis that I could get my arms around, but what is this ST thing? And now that we know what it was called, how do we fix it?
That answer continued to elude me through yet another year of trying prescription medication after prescription medication, some of which helped my tremors and neck pain, but they came with a high cost. Many of the medications left me tired, listless and dazed beyond belief. This just wasn’t how life was meant to be. Then came the promise of Botox. My neurologist had referred me to a specialist at the Marshfield Clinic to see if I was a candidate for Botox injections. As it turned out, Botox was an option for me. What I didn’t realize was just what that meant.
I remember seeing that huge needle for the first time and the awful sound of the EMG machine as the doctor hunted for my offending muscles in my neck. But rather than being scared, I was exhilarated. What if this really worked! What if my neck pains and tremors would go away! I’d be able to regain control of my life once again. That though, more than anything, made everything worthwhile, the long drive to the clinic, and the pain of the injection. Everything was secondary to the chance at regaining my life.
The whole first visit seemed so surreal, at least until the Botox began to do its duty. You see that first series of injections were . let’s say, just a bit off the spot. Suddenly, lifting my head and swallowing became not just a challenge but a nightmare. Scared and getting more depressed, I felt this wasn’t a course of treatment that was going to renew my life. This just can’t be happening!
My saving grace came to me in the form of a pamphlet I had picked up at the doctor’s office. That pamphlet outlined a support group called ST/Dystona Inc. and a place to find just what I needed, other people just like me. I think I spent that first month glued to my computer screen, reading every message posted on the web-site and marveling at the fact that I was not alone in this fight.
With the support of a bunch of wonderful people who understood just how I felt, I began the road to regaining my life. The Botox was beginning to deliver what it promised. My neck began to straighten out, and for but a small portion of the time between the treatments, my neck pain was mostly under control.
Every three months for four years I made that dreaded trip to the doctor’s office to receive my 300 units of Botox. While those visits helped to keep my neck somewhat straight, I still had some pain and those madding tremors were getting worse. I do believe I could endure almost any amount of pain, but the humiliation and frustration of the tremors were keeping that quality of life I needed just out of reach. Obviously, Botox wasn’t the final answer I was looking for.
It was during the San Antonio symposium that I first heard about the DBS (Deep Brain Stimulation) procedure. Brain surgery, something that should have scared me beyond belief, yet I was not only excited but also determined to find out more. I quickly began to network with individuals that had successfully had the surgery, asking questions, finding out the facts. The Internet quickly became my best friend once again, researching everything I could find about DBS. After more questions then my doctor could handle, he recommended that I visit the Neurology specialist at the University of Wisconsin hospital, where the operation was being done for Parkinson’s patients.
While the doctors at UW were not convinced that I was a good candidate for DBS, I was now determined this was the right direction for me. If this procedure could make my neck straight, alleviate my neck pain and help, even the littlest bit with my tremors, then I was all for it. Of course, our insurance company wasn’t as convinced as I was about the surgery. They denied my initial request with the speed and efficiency of a well oil system.
Now, I not only had to become well educated about my affliction, I needed to become a specialist on how to maneuver through a system designed with roadblocks and traps at every turn. It was about the time of my second denial that the Federal Government actually came to my rescue. Yes, the FDA saved the day by approving DBS surgery for Dystonia on a humanitarian basis. Armed with my new FDA reports and letters from my doctors I marched down to the insurance company’s office and demanded that they once again review my case. A couple days later the call that I thought would never come, actually came. I could get the surgery.
The first surgery happened on a beautiful June Thursday in 2003. Scared but excited I arrived at the hospital at 5am. Before I knew it, my head was shaved and I had this strange contraption bolted to my head. After a quick trip through the MRI, the doctors had what they needed, a complete map of my brain. Soon, I found myself in the operating room. I couldn’t see much as the halo attached to my head was securely bolted to the operating table. Everyone in the room was so nice, trying to make sure I felt as comfortable as possible. After all you don’t get to sleep with this type of surgery. As with most brain surgeries, they need you awake to make sure everything is going well. While several parts of the surgery are a blur, one thing that clearly sticks in my memory is the sound of the drill as the surgeon began to make his way to my brain. The sound of a dentist drill in no way prepares you for this sound. As the surgeon began to place the probes into my brain, the staff kept asking me how I was feeling or if my vision was being affected. After the successful placement of the probes and a little testing from the staff, they began to seal the new holes in my head. I remember the smell was similar to the glue my son used to build model airplanes.
After a day of recovering in the hospital, the doctor released me into the care of my loving family. My mother in-law became my nurse for the next week. While there wasn’t a lot of pain in the area of the surgery, I did have tremendous headaches. After eight days, it was time to head back for the next surgery. During that first surgery the surgeons had placed the probes and ran the cord under my skin just behind my ears. Now it was time to receive the heart of the DBS system, the pulse generators. These small hockey pucks were to be placed just under the skin on my chest, with the wire fished down from behind my ears. Thankfully, I got to sleep through this surgery.
The moment of truth came the next day, the time when my new equipment would be turned on for the first time. While the doctors had told me not to expect immediate results, my anticipation was at a peak. The first step was to determine how my body would react to the various levels of voltages and pulse widths. I have experienced strange things in my life, but nothing could prepare me for this type of experience! Through a trial and error type process they tried various settings on my new generators to find out just what my tolerance levels were. It is difficult to explain the experience of having your body react to this type of stimulation. After an hour of testing, the doctor set the generators at the level he expected to see results and set me on my way.
Three months later I was back at the UW Clinic, for what I have come to call my ‘Tweaking Session’. That first visit was fantastic, my head was straight, I only had a little pain, but, most importantly, those dreaded tremors were under control. I still have occasional tremors; the doctor refers to them as ‘break-out’ tremors, my body’s reactions to a stressful or exciting situation, but as soon as I calm down they are gone.
As I look back on all the decisions and all the options, I feel DBS was the correct option for me. As much as I’d like to say my Dystonia is cured, I realize it will always be with me. With DBS, my Dystonia no longer controls me..I control it!
My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews