August 13, 2013 | by Darcy Blake | “90 percent of them do improve,” I read in one of the few articles I found on the success of DBS for Parkinson’s Disease patients. Having met a glitch in my post-surgery outcome, I was looking specifically for stories on patients whose tremor relief stops suddenly. I am disappointed to say that I am one of the suddenly-stopped ones. 90% is my line in the sand for triumph and I hope I’m one of them.
I went away from the doctor’s office on August 6 thinking my tremor was over thanks to DBS, and it was for four glorious days during which time I even posted a video to illustrate the victory of my surgical outcome. Then, at 12:45am on August 10, I was awakened by a shaking hand that was as annoying as before the stimulator was activated. I realized that my respite in the land of the still was over, at least for a while.
What happened? How is it that the DBS controlling my hand so magnificently, stopped cold-turkey? My doctor, Dr. Rima Ash says it is still very early in programming, so she is not surprised that the tremor is not consistently improved as of yet. It may take a few weeks until the stimulator is adjusted before adequate symptom relief is had. I’m doing it without additional medications, adding to the challenge. You are supposed to give the surgery six months before you judge its success.
My neurosurgeon Dr. Mark Sendrak said, “Be patient with the programming and effects. Most studies suggest that the effects of programming and changes in the brain can take up to 6 months. There are both immediate and delayed effects of DBS, so the re-emergence of symptoms may indicate some changes. These are factors in addition to hundreds of thousands of possible combinations in programming. Time is the biggest factor here.” He says that the possibility that something broke in the device is very unlikely. In any case, Dr. Ash will be able to know that when she sees me at the next appointment. I am very lucky to have a responsive medical team.
When you look online, there is a small and varied range of publications on DBS problems. A blog titled, Why Doesn’t Deep Brain Stimulation Surgery Always Work? published in 2007, describes the work of Michael S. Okun, M.D., of the University of Florida Movement Disorders Center, Gainesville, Fla., and colleagues who evaluated 41 consecutive patients who came to one of two specialty movement disorder centers over a two year period complaining of unsatisfactory results from deep brain stimulation surgery performed elsewhere.
“Each patient was evaluated by a movement disorders neurologist; the patient’s medical record was reviewed; the DBS device was examined and properly programmed; and postoperative imaging studies were evaluated whenever possible. Ultimately, with diligent reprogramming, medication adjustments, and in some cases electrode replacement, 21 (51 percent) of the 41 DBS failures in our study were successfully salvaged,” the authors conclude. They went on to say that, “As the prevalence of DBS therapy increases, implanting centers are becoming more experienced. We are hopeful that this experience, along with ongoing efforts to educate DBS practitioners regarding effective practices, will result in global improvement in the outcomes of DBS surgery.”
At University of Colorado Hospital, neurologist Olga Klepitskaya carefully tells patients, “I say, ‘It can work like a miracle, but it doesn’t all the time. Be realistic.” (2008). http://www.denverpost.com/aurora/ci_9397132
In What is DBS Therapy, on Healthcentral.com (2009), the authors wrote that, “In one study, 99 percent of serious adverse events associated with Medtronic DBS Therapy were resolved by 6 months.* They also wrote, “Risks of brain surgery may include serious complications such as coma, bleeding inside the brain, seizures, and infection. Medtronic DBS Therapy could stop suddenly because of mechanical or electrical problems. Any of these situations may require additional surgery or cause your symptoms to return.”
*Weaver FM, Follett KA, Stern M, et al. Bilateral Deep Brain Stimulation vs Best Medical Therapy for Patients with Advanced Parkinson Disease. JAMA. 2009;301(1):63-73.
The Northwestern Medical Faculty Foundation said in 2009, “During this time, it is very important to remember that this is truly a process and that patients are not immediately at their final level of improvement once the stimulators are first activated. Some of the beneficial effects of stimulation may take hours or even a few days to become fully apparent. Along the way there may be side effects from either the stimulation or the medication (or the balance between them) that can cause the patient inconvenience until they are smoothed out. While these episodes can become disappointing at times, especially because of the hopes that surgery will lead to great improvements and the great frustration that patients with advanced PD endure, the final outcome is usually excellent.“ http://www.parkinsons.northwestern.edu/pdf/Patient_guide_to_PD_DBS_Sept09.pdf
Comforting, and admirable as technology progresses, what does that mean for me, a recent DBS patient? It is possible that DBS therapy will not help?
“It can take months to fine-tune settings on the battery pack and adjust medications to give patients optimal movement control,” reported the Wall Street Journal in a 2012 article, “Wiring the Brain, Literally, to Treat Stubborn Disorders.” “But in rare cases, the surgery alone seems to reset the brain circuits. Tom Rogers, a former truck driver who could no longer drive, write or drink from a glass due to severe tremor, had the electrodes implanted and his shaking stopped immediately—even though the electricity has never been turned on. “My hand is steady as a rock,” marvels the 66-year-old Oswego, Ill., resident.” http://online.wsj.com/article/SB10001424052970204555904577164813955136748.html
I’d like that euphoria, “steady as a rock,” that I had for four days to return. I’m back to square one, but I’m counting on being rock steady again soon. All I can do is stay positive, work with my movement disorder specialist, don’t freak out, and trust that in six months time, it will sort itself out.
For a good detailed explanation of Deep Brain Stimulation, check out this link: http://www3.parkinson.org/site/DocServer/Guide_to_DBS_Stimulation_Therapy.pdf