The initial “breaking in” period for programming after Deep Brain Stimulation (DBS) is often cited as a minimum of three months. During this period of uncertainty, patients who’ve elected to have DBS might drive their doctors and themselves crazy wondering if the procedure will eventually reduce or stop their tremors and other symptoms associated with Parkinson’s disease.
At the 2016 World Parkinson Congress in Portland, Oregon, Dr. Michael Okun addressed DBS success in a presentation describing the hazard of expecting too much from the procedure.
Eleven Weeks In
Eleven weeks have past since my second DBS surgery (going from unilateral to bilateral.) It is too early for me to evaluate my surgery, and I am now experiencing the meaning of Dr. Okun’s presentation, and what feels like to be challenged by expectation.
I was extraordinarily blessed with the outcome of my unilateral DBS procedure in 2013. I tried a few programs and found a winning setting for my Medtronic device without side effects within six weeks of my surgery date.
In my second DBS surgery, I’m sorry to say that I’m currently experiencing slurred speech. Specifically, I feel like I am having trouble initiating enunciation.
Tremor that Doesn’t Quit
The tremor on my right hand has not stopped.
My doctors at Kaiser Permanente/Redwood City have explained that programming the second side can take longer to accomplish than programming unilateral (one-sided) DBS.
Bilateral DBS Increases Risks
UC Davis Health System writes that “Speech can get worse after bilateral DBS.” They say “The reason is not clear, but it is due to DBS. The voice may be softer. Speech may be slightly slurred or stuttering may occur.”
I am told the slur will disappear immediately if I turn off the DBS on the problematic side, but then the shake will return. Meanwhile, I’ve made an appointment with a speech therapist to see if there’s anything I can do by way of speech exercise to curb my enunciation problem.
The possible miniscule overlap of the stimulation fields for the right and left side of the brain create a target of concern, like a hot spot on the map for successful DBS.
My neurosurgeon at Kaiser Permanente/Redwood City Dr. Mark Sedrak has been studying the targeted area by looking at milliVolt potentials on second side surgeries by recording the opposite side. He has found that patients can have 0.2-1mV overlap on the opposite side of brain. One theory is the summative effect of the ipsilateral stimulation plus the opposite side create an even higher field of tissue affected. Another hypothesis is that those areas of the brain that control speech in the STN (or other targets) can no longer compensate when the opposite side of coverage is added.
I’m trying out a new advanced DBS programming that includes an approach called interleaving, a rhythmic automatic switching of current between two groups of electrical charge that improves the stimulation effect when other programming options failed (suboptimal benefit or intolerable side effects.)
The trade off with interleaving, according to Colorado researcher Sierra Farris in an interleaving study “is that it requires a rapid power drain that may double or triple rate of battery depletion shortening battery and increasing replacement surgery.”
I’m not a fan of an increase in surgery visits so I may not stick with this mode of programming for long. I plan to work more with my movement disorder specialist Dr. Rima Ash at Kaiser Permanente/San Francisco. As Dr. Sedrak says, “More trials of programming are worth it to try and find the right balance.”
At Moving Day, San Jose, I walked the route with my friend CC, who also recently had bilateral DBS at UCSF. She explained that her DBS took nine months of adjustments to get just the right programming. She is relieved that her DBS is successful. She said, “Few things will test your patience like DBS programming can. For me, it was important to keep trying different modes for fairly long periods each, changing one variable at a time and even retracing my steps to try some settings again. Lots of patience & persistence can pay off big time!”
It’s a relief for me to be assured by my friend, and fellow DBS patient that I have months of possibility ahead of me. All that’s needed is wise advice from my doctors, time, trial and error, realistic expectation, and good luck.