My name is Mary Gerber and I live in Cheyenne, WY. I spoke to you sometime ago about the fact that I have Spasmodic Torticollis and had had DBS surgery. You wanted me to write then and I just couldn’t and it’s a good thing as so much has changed in my life. Spasmodic Torticollis became an issue for me approximately 10 years ago. I had to retire almost immediately and only had to apply once to Social Security to receive disability benefits. The ST also cost me a couple of my dear “friends” as they found it difficult to accept the “new me” and my limitations. But, on the upside, I gained some new friends who have accepted me for who I am and now I know the difference between people who profess to be friends and those who really are. An important lesson for anyone!
Believe it or not, a physical therapist diagnosed my problem and then came the situation of finding a physician to care for me. Lucky for me my PCP is a wonderful woman, Carol Fischer M.D., who read everything I brought her from the internet and then she researched it on her own. I think we know more about ST than most of the doctors here in Cheyenne. She referred me to a friend of mine, a neurologist, Roy Kanter, M.D., who knew enough to refer me to a specialist in Denver.
So, that year began many trips to Denver from Cheyenne. I received Botox injections which helped at first and then I developed antibodies. By then myobloc came on the scene. I started seeing another neurologist, Chris O’Brien, M.D. at Swedish Medical Center and the Colorado Neurological Institute. He told me I had had ST all of my life. Also, he said that DBS was on the horizon for ST patients. It was a good thing as I also developed antibodies against the myobloc injections. My right arm was twisted under my chin and my head was lying where my shoulder should have been. The pain was excruciating.
Dr. O’Brien left the practice and he placed me in the most capable care of another neurologist, Dr. Kumar, his nurse Kim Martin and the neurosurgeon, John McVicker, M.D. They were part of a wonderful team and gave me hope when I was about to give up on myself.
I had my first DBS surgery in August of 2003. No matter how hard he tried, Dr. Kumar couldn’t get it adjusted the way he would have liked it so, after several months, we decided to go in again and move the electrode back the width of 3 dimes. Now that doesn’t sound like much, but it made the world of difference for me. Finally, my ST was quiet and I was without pain after several years.
Several months later, my head started pulling to the right again. It became necessary to have DBS on the right side of my brain. In May of 2004 I made my third trip into surgery for DBS surgery. However, was the DBS ever worth it! My head was still!!
I really thought I had ST whipped with the help of the neurologist, the neurosurgeon and the whole team. The down side to this, and why does there always seem to be one, is that I now have writer’s cramp in my right hand and can no longer write legibly and also have spasmodic dysphonia and blepharospasm in both my eyes. An eye doctor in Cheyenne is treating my eyes and I have been going to a speech therapist for the dysphonia.. Both seem to be helping me; however, my life will never be the same. But, I have learned that, as a person, I am no longer defined by Dystonia in any form.
The person who deserves the most credit, besides the team at Colorado Neurological Institute, is my caretaker, my husband, my friend, Ron. He has been right besides me through it all. I truly don’t know where I would be without him. We had our 40th wedding anniversary in June, 2004. We have been through a lot together. Dystonia has just been another chapter in our lives, one that will never close but one which has brought us closer together. It most certainly has shown us both how sacred life is and how we both look forward to another day.
I realize that this is way too long, Howard; however; I wanted to tell you the whole story. Ron and I are planning on going to Albuquerque in September. Finally, a symposium close to us!!
Mary V. Gerber
1851 Milton Dr.
Cheyenne, WY 82001
P. S. My e-mail is youwhack @ bresnan.net if anyone would like to contact me regarding DBS or anything relating to my experiences, etc.
I am more than happy to write a follow-up letter regarding my DBS surgery. Do not remember where I left off, but in April, 2005, had my batteries replaced. That is a simple procedure. In and out on the same day, very little pain and discomfort. The one thing that we face with DBS that Parkinson’s patients don’t is that we are “on” 24/7 and usually at a higher voltage level. That is why the shortened battery life; however, I am still going on with the “newer” batteries and will be checked again next week. I was the first Dystonia patient to have DBS in the Rocky Mountain area. I live in Wyoming and my physicians are at Swedish Hospital in Englewood, CO.
My DBS surgery continues to be wonderful for me. The pain and discomfort is minimal and I continue to function very well. One bad outcome is my voice, have pretty much lost my voice. The electrodes run closely alongside my vocal cords and the impulses from the electrodes interfere with my speech. Also, my right hand doesn’t like to write very well. Have learned to talk slowly (very) and print, neither of which is difficult for me to do, just a little inconvenient.
I have found the people I work with at the Colorado Neurological Institute are great at programming and they have found a good level for me. I stay on that level and when it starts downhill, time for new batteries. If I had the choice again, I would have the surgery again and again. It gave me back my life. I pray that the doctors don’t stop dealing with dystonia patients, not only for me but for the many others out there who would benefit from the surgery.
I haven’t run into the Parkinson situation at all. I am treated with dignity and respect as are they. In fact, after sitting in the waiting room, some of us have formed friendships. We are cheering each other on and our caregivers. Never forget the caregivers! The worst case I saw was a lovely lady who had dystonia and Parkinson’s. So, whenever I feel sorry for myself, I think of her.
I feel that I have gotten way off track from what you want. The initial surgery was scary. I was met at the hospital doors by a team all there for me. Someone shaved my head on the spot where they would place the electrode while someone else hot the halo ready to place on my head. Believe me, even with a halo, I didn’t look much like an angel. The halo is necessary to hold your head still as you are awake for a good part of the surgery. When the doctors ask you to do things, you have to be alert enough to respond to them. The beat part was being put to sleep when they were done placing the electrode. My surgery was done on a humanitarian basis. At the time of my surgery, DBS was an experimental basis for dystonia and had to be approved on a case by case basis. My head lay over my right side where my shoulder should have been and my shoulder was directly under my chin. Must have looked like a pretzel. The programming was difficult at first as the doctor couldn’t get it just right. At the point where we had spent several months working on the programming, he decided to do another surgery and reposition the electrode. That did the job for that side. Then the other side began acting up; back to surgery and more programming. So, happy as I am with the results, it took awhile to get here. The medications didn’t do any good and I developed antibodies to botox and myobloc. I am very much an advocate for the DBS surgery. Before the surgery I sat in a chair, look out the window and watched life go by; now I am part of life. I can drive so I can be a grandma to my grandkids. My wonderful husband has been relieved of many of his concerns like laundry, grocery shopping, taking me everywhere and now he is my voice. Where would I be without him? There are things I can’t manage like cleaning the house and cooking.
I hope this helps you, Howard. Cut where you will, do whatever you want with this letter. I’ve done some good if this helps someone trying to make the decision for DBS or not. Let me be clear about the surgery, it is no walk in the park. A person wants to be prepared for the programming, which can be long and arduous. PATIENCE is the key word I think.
Mary V. Gerber (Ronnie)
1851 Milton Dr.
Cheyenne, WY 82001
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