So how has it been? Initially, I would say very good. I believe it is the sole reason I have been able to continue working at my job. The initial tweaks removed the dystonia and painful cramping in my hand and eliminated my tremors. DBS does those things very well. However, as my symptoms fluctuate and constantly progress the system is having a harder time compensating or keeping up, as it were. Each probe has so many adjustments that the tweaking could be endless, but, that's a good thing. More, finer adjustments means longer adjustment appointments, however it gives the neurologist the ability to find the 'sweet-spot" with less side effects. My problem with the programming adjustments is that for some reason, I am always at my best when I see the Neurologist. She makes these adjustments and asks how I feel. "Great" always seems to be the answer but then I came in feeling great too. Just once I like to be seen at my worst - "There, adjust me now!"
One of the drawbacks to the surgery is the area they need to simulate is very near other important areas in the brain. Not much room in there. If my settings get adjusted too high, I get what can best be described as "leakage" into a nearby area. In my case leakage into the area controlling facial muscles. This causes a noticeable slur of my words which when I'm "on" is fine and hardly noticeable. But, when I'm sliding down to "off- state" I am very difficult to understand and frankly get so frustrated I just make it worse. My Parkinson's symptoms tend to fluctuate day-to-day as well as throughout the day. So expecting a device that sends out a distinct and constant pulse to keep up with all the changes is not something I would expect it to be able to do. But, that said, when my meds are working, the DBS unit does a remarkable job.
So the big question remains "was it worth it?" Absolutely. The main reason I had the surgery was an almost useless left hand. The tremor control was a bonus. In some ways, now that my symptoms have progressed to both sides of my body, my left hand is more useful than my right. I will have to work on that with at my next adjustment appointment.
Next up: Some of the negatives of the Surgery
