My DBS Journey: In Search of “Quality of Life”
I was first diagnosed with Cervical Dystonia in 1998, but I did not learn about Deep Brain Stimulation (DBS) until the summer 2001 after moving from Houston, Texas, to Ocean Springs, Mississippi. My backdoor neighbor Linda noticed my head tremor, and immediately we found we had something in common – Dystonia. We started comparing notes and the treatment history. Linda and I quickly became friends and it was she who introduced me to Howard and ST/Dystonia.
From 2001 through the summer of 2006, I was under the care of a neurologist in Houston who was treating me with Botox and oral medications to control my head tremor. He did not consider me to be a legitimate candidate for DBS when I asked him about it. By 2005 my symptoms were still limited to head tremor which was not severe although it was gradually escalating. Botox (and later Myobloc) did not help me a lot because the tremor was complicated with no-no and yes-yes movements along with pulling in different directions. As the dosage was eventually increased to 400 units, the side effects more than offset the benefits. Drooping of the head for several weeks following the injection was sometimes accompanied by intense neck pain.
In September 2005, for the first time, my husband and I participated in the ST/Dystonia Symposium in Albuquerque, New Mexico. All of the presenters were great, and we learned from each of them as well as from other individual participants. It was a great experience overall and comforting to learn how others cope with Dystonia. I highly recommend these symposia.
One of the presenters was Dr. Erwin Montgomery. He spoke about DBS specifically for Dystonia patients. During the speech, he said that only the patient can assess the “quality of life”. That statement struck me and marked the real beginning of my DBS journey. By 2008, I had been told by several physicians that DBS would be my best remedy to control my tremors. However, many of these doctors also advised me that DBS may not be as effective as for those with Parkinson’s and that probably the best I could expect would be 60-70% improvement. The one who really gave me a wake-up call was my neurologist in Austin Dr. Joohi Jimenez-Shahed, who is now with Baylor College of Medicine in Houston. She said “You are a good candidate now; but in the future, if you develop other general health problems, you may no longer be able to have DBS.” I asked myself, “Should I choose the treatment that might help me greatly? Should I not be thankful that I am living in a time of such medical wonders and take the plunge, even though the result might be less than what the doctors projected. Or , do I want to live the rest of my life in the future regretting not having taken advantage of this opportunity?”
Considering the risks associated with DBS, perhaps many patients with similar symptoms as mine may not opt for the surgery. Only the patient can determine what is important in this regard. During the next couple years I thought long and hard about the risks of proceeding with DBS and eventually made an appointment with Dr. Montgomery. While there are many good neurologists and surgeons who perform DBS, my husband and I were convinced that Dr. Montgomery, who was then practicing in Madison, Wisconsin, would be the one to do my DBS based on his experience in working with the number of Dystonia patients as well as his personality and bedside manner. While I pondered and vacillated, Dr. Montgomery saw the “light“ [Smile] and moved South to Birmingham, Alabama, and the University of Alabama at Birmingham Health System. We scheduled surgery for May 19, 2010.
Before the doctors agreed to take my case, I had to convince them that I still have a reasonably sound mind by completing a pre-operative neuro-psychological evaluation. The test was to thoroughly check my memory and information-processing capabilities and was quite lengthy and involved. After completing the test, I was sure I flunked, but I didn’t! If I could pass it, you would have no problem.
A couple of days before the scheduled DBS, we checked into a hotel near the hospital. We were favorably impressed with everything about UABH as well as the city of Birmingham. As many of you know, Birmingham was once an iron- and steel-production center. That industry is essentially gone and, it is now a bustling leading-edge medical center. The area around the sprawling hospital complex has a wide variety of very good restaurants. Within a short driving distance is a major shopping center and everything is easy to get to. The natives are friendly as well. Our only minor complaint was about grocery prices. Surprisingly, they were markedly higher than in Central Texas.
DBS is done in two stages. The first is to implant electrodes in the brain and the second is to place a pacemaker like device; i.e., patient programmer, or neurostimulator (In my case, Activa PC by Medtronics) in the upper chest a week to ten days later, after the first surgery has healed. Like many other Dystonia patients, I needed a bilateral placement of electrodes in the brain. I elected to have both electrodes placed at the same time. Some elect to have two separate surgeries for placing them.
Implanting the electrodes typically takes 5-8 hours. Dr. Bart Guthrie was the surgeon. It was not comfortable having my head in a metal halo which also enclosed my face in a basket-shaped mask. There are two types of halos—plastic and metal. Some surgeons use a plastic one; and, if I remember correctly, the plastic one may offer more comfort to patients, but it may make targeting the exact position for the electrodes more ‘challenging” to surgeons. My surgery took a bit less than five hours, which was probably the shortest time that a patient could hope for a DBS operation. However, I was getting tired and I thought I could not stand another ½ hour of being attached to the bed frame. I was awake or semi-awake throughout. I can remember clearly hearing an electric drill on top of my skull. When the drilling noise stopped, I heard something hitting the table above my head, which I thought sounded like a piece of skull bone. I also remember toward the end of the operation, when testing the implanted electrodes, Dr. Montgomery asked me every time he upped the amperage if I felt anything or saw anything. At this stage, he had a few other physicians and scientists as well as a representative from Medtronic in the operating room to record the result for their case study. [I should have charged admission.] My answer was always no, and I was afraid at the time that I was going through all of this for nothing and that the procedure wasn’t working on me.
Although I had always been proud of my cast iron stomach, after the surgery I was nauseous for two full days. I could hold down nothing. Yuck! After that, I quickly regained my healthy appetite.
The procedure to implant the neurostimulator (Activa) was not nearly as involved. It was done on an outpatient basis 7 days later on May 26, 2010. I had a choice of placing it on my left or right side. Since I am right-handed, I chose to have it implanted on my left. What I did not consider was that a seatbelt would be directly over the stimulator when driving, and even eight months later, I still feel discomfort from that. The front part of my head had been shaved for the first surgery. Unknown to me, more of my head was shaved under general anesthesia. It was rather shocking to see the strange figure with the unevenly shaved head in the mirror in the semi-dark bathroom that night following the surgery. Yikes!
The recovery from the two surgeries was amazingly rapid. I was working on my laptop even before the second surgery. I was afraid that certain activities might be prohibited for a while, but there were no restrictions. I became attached for the next several months to my fashionable wide-brim straw hats and scarfs.
My Activa was initially powered up on June 1. I felt a slight jolt when the doctor turned up the amperage. He said that I was tolerating a high level of amperage and that was good because it gives doctors a wide span of choices/options when programming and reprogramming the device.
On June 2, I returned to Austin. There is no place like home! Dr. Shahed, my neurologist, removed the sutures and took some base-line readings. Afterwards I saw her at 6-week intervals (later extended to 6-month) to make changes in the programming as needed. It takes about 7-10 days for my brain to react to new programming of the neurostimulator. The long reaction time is somewhat typical for patients who have DBS deep into the globus pallidus. Dr. Shahed and I have agreed to allow several weeks between programming adjustments to ascertain whether and to what extent the new programming is effective to control my tremors. As you may already know, neurostimulator programming is done basically on four parameters— active electrodes, voltage, pulse width, and frequency/rate. Doctors and patients are challenged to find optimal stimulation parameters. [I am beginning to sound as though I know what I am talking about, huh?] Another challenge, particularly for patients, is the dynamic nature of Dystonia. It changes from time to time and requires that different level of stimulation be established accordingly. Activa can be programmed by patients; however, in the case of Dystonia patients, Dr. Shahed does not recommend self-programming; or at least that I not program it myself at this stage.
You will need to be prepared for certain possible side effects of DBS although many of them can be corrected or lessened. These may be downers to you, but I think you need to consider them. These side effects vary by individual. One was that I noticed when applying facial cream, the movement of my left hand was different from my right. My right hand was moving in circular motions, and my left moved almost up and down. My husband noticed I was shuffling my feet when I walked, and I was experiencing balance problems more than before. I lost some muscle strength, and I have been having trouble getting in and out of cars, dragging my left foot in particular. The biggest surprise and shock to me was when I went back to swimming, I found that I have lost some body coordination. I almost had to retrain myself to swim.
On June 30, 2010, I had an auto accident. Perhaps I will never know whether or not the accident was somehow related to my continuing problem of muscle weakness. A doctor of physical medicine sent me to physical therapy sessions for 3 months. I did not gain a 100% satisfaction from that and discontinued the sessions after Christmas. The physiatrist is still working with me to correct my gait problem, particularly my walking with my left foot turned in and also to regain muscle strength in my left leg. This may very well be something I will have to live with. I have some other minor problems that started after DBS; i.e., cramping of legs and hands. The problems may or may not be related the surgery.
Before the surgery, I was told by my DBS peers that the surgery is just the beginning and perfecting one’s own DBS is a life-long journey. I now understand and am experiencing just what that means. Overall I have approximately 75-80% improvement i n controlling my head tremor. In time I hope this will be even better. Although I seem to have several problems that started after the DBS, I have not regretted for one moment that I opted to have the surgery; and all my friends say that I look very healthy and happy. Ask yourself the same questions that I asked over a year ago, and decide what’s best for you. Only you can assess the alternatives. At the end, I want to thank my DBS peers in ST/Dystonia Inc. who freely shared their experiences and especially Howard Thiel who patiently answered my questions and helped me to find help and advice.
Kazuko “K.” White
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