My husband called and gave you a change of address and talked to someone about my surgery. She had mentioned that it would be helpful for other people with dystonia if I would write about my experience with DBS surgery.
The sudden jerking of my head caught me by surprise as I was working as a volunteer in the thrift shop. As time went on, the involuntary movements were more frequent. This was the beginning of my journey with dystonia. In September of 1995 my family doctor sent me to a neurologist who sent me to a clinic for 2 MRI’s. My head was jerking too much for a successful MRI. I was then sent to Barnes-Jewish Hospital in St. Louis where I was diagnosed with Cervical Dystonia. By this time, I also had Oromandibular Dystonia, which was causing involuntary movement of my mouth & jaw. I was given botox injections, which I became resistant to in less than a year. After FDA approved myobloc, I tried it, but without success. I also tried medications such as Artane, Baclofen, Valium, Primidone, Ativan, Sinemet, and Klonopin.
When I heard that ST/DYSTONIA was having a speaker on DBS at the symposium in San Antonio in 2001, I had to hear her. She had her surgery at Tulane Med. Center in New Orleans in 1999 and her head was not jerking – WOW! There were only a few doctors who were certified to do this surgery at this time. It would mean a 600 mile trip each way, but my husband was willing to go. My surgery was scheduled for February 6, 2002. The surgery took about 12 hours from beginning to end. I was awake during the surgery except at the end when they implanted the pulse generators and put the wires from the generators to the brain implants. I must admit, I was disappointed when I awoke from the surgery.
I still had all the involuntary movements. I did not realize that the surgery was only to implant the electrodes in the basil ganglia of my brain and that improvement would come with the adjustments. The adjustments are a drawback when you live 600 miles from the doctor and have to be adjusted every 6 to 8 weeks. Another drawback, which I have to deal with, is the batteries in the pulse generators. I was told that the batteries should last for 3 to 5 years. I have had surgery to replace the pulse generators 3 times in the last 3 years. The first one lasted about 18 months, the second one lasted 9 months, and the third one lasted 6 months. I understand that the generators are set using a lot of power and the pulsation is set fast and this is causing the batteries to run down rapidly. Medtronic, the company which makes the units, is working on a rechargeable battery, which may be out by late spring of this year.
The DBS surgery has helped more than any of the medicines – and botox was very short term for me. Even with the battery problem and the frequent adjustments DBS has helped more with my day to day coping with dystonia. I also take 4 benadryl most every day to help. I also take a Trazodone 100mg. before going to bed.
I was told many years ago that dystonia is a very individual disease. We all react differently and are affected differently. Very few doctors address the emotional aspect of dystonia – the anxiety of dealing with the anxiety that comes from dealing with dystonia. My friends and family, my husband especially, has been very supportive. I don’t know that I would have been as patient if the tables were turned. Take one day at a time and the Lord will see you thru.
UPDATE (August 10, 2007):
Many things have come to pass in the last 2 years.
After going to the University of Florida for testing, Dr Okun and staff found that the leads on both sides were placed wrong. The original operation had been done at Tulane. He suggested that in order to correct the problem that I should have another operation to correct the placement of the wires. The power was up so high on the pulse generators that the batteries would run down in about 5 months. In September, 2006 at the University of Florida, Dr. Foote and Dr Okun performed another DBS surgery on me. It only took about 6 hours (the 1st one took 12 hours), they were able to do both sides during this operation. The new placement has worked very well; my movement has been minimal. It seems to hold pretty well for about 6 months with only small adjustments. The power is low enough that the batteries should last around 2 years.
It was quite trying to go through the surgery again but the end results have been well worth it.
Some of the problems associated with the surgery and programming that I have experienced, it seems, when programming, if too many changes are made rapidly, the monster (as one Technician called it) really acts up. My head would jerk and pull bad and, the more adjustments that would be made, just made it worse. It would take overnight or sometimes the next day before it would settle down even when a setting used before was used. This usually caused a very restless and unpleasant night. I would go back in 2 days after one of these sessions and hope she would go slower. Many of my adjustment sessions at Tulane went this way. It seems at the University of Florida they go slower which doesn’t stir up the monster but then, on the other hand, new adjustment perimeters are not checked out to try to get better results or to get it to hold longer with the adjustments. I guess as more is learned about the DBS surgery and adjustment we must be patient and content with the progress that has been made.
I don’t know if you are interested or not but I’m sending a copy of the different medicines that I tried and also the operations. If you can use it ok, otherwise pitch it.
Botox A Shots 1996 at W U St. Louis, Mo.
March, May, July, September
8 Week intervals
Nov. 13, 1996, Dec. 11, Eyebrow Injection
July 29, 1998, Aug. 26, 1998, Eyebrow Injection
Tried Myobloc after it was approved, didn’t work
DBS Surgery Feb. 2002 at Tulane University, New Orleans
Had Pulse Generator’ s adjusted every 6 to 8 weeks at Tulane U
until Hurricane Katrina
Medications that have been tried
Primidone, Baclofen, Sinemet, Artane, Mexilitine, Klonopin, Valium, Ativan
Surgery for Battery Replacement
Oct. 2003, Aug. 2004, Mar. 2005 at Tulane
Oct. 2005 at Fayetteville, AR
Mar. 2006 at Springfield, MO
Aug 2006 at Springfield, MO
DBS Surgery Sept. 2006 at University of Florida, Gainesville, FL
1228 Persimmon Hill lane
Lampe, MO 65681
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