The right time to have DBS is when you are ready. That point is deeply personal and reflect any number of factors from balancing risk, the need to work, and yes fear.
I’ve had DBS done twice. The first time was 2018. I was originally reluctant because my main concern was the ability to work. I was getting by using speech recognition software. I was worried that the surgery would impact my ability to speak. Since the tremors weren’t preventing me from working and a complication from DBS could, I decided to hold off. What finally changed my mind was the promise of reducing my medication. The Sinemet made me tired which did make work harder. Also, my tremors were getting severe enough that the scales were tipped.
I was awake during the surgery, and I found it fascinating. It was interesting to hear the doctors and nurses chat and give instructions. It’s a lot different from Grey’s Anatomy. The main thing I remember is the sounds. The sound of scraping a scalpel on my skull and especially the sound of the drill. This didn’t really bother me that much though and it makes for a good story.
At the time they asked if I wanted to do both sides and I said ‘no.’ My left side was rock solid at that point, and I retained a hope that it wouldn’t become bilateral. I still think that was the right decision even though it meant going through the surgery again five years later.
The results were great. But it takes time to get the programming right. What was particularly frustrating was that I would leave the office with no tremors, but they would sneak back over the course of the next few weeks. After about my third session my MDS left it at a high enough current that it stayed stable. For a while there it was almost like I didn’t have Parkinson’s. I was able to reduce my meds and had a new lease on life.
Alas time stops for no one, and the disease did progress. I had more problems with dystonia, I had trouble concentrating, and the dreaded apathy got worse. This led to me leaving work for the pastures of disability two years after the surgery.
When my left started to tremor five years later, I didn’t hesitate and said that I wanted DBS on the other side. I sought out the same surgeon to do the procedure even though he had switched hospitals. There were a surprising number of differences in the procedures. He said that this time he used robots, but I never saw them. The main difference was how much I was awake. They only woke me up for the lead placement. I was asleep for all of the drilling and even the closing. If I had a choice, I would have done the ‘more awake’ version. I was groggy and out of sorts when they woke me, and I don’t think the feedback I gave was quite as good. I suspect I would have been tremoring a lot more if I was awake more and dialing in the placement would have been more dramatic. They also didn’t give me a catheter like they did the first time. I much preferred this even though it meant requesting a urinal before I went under.
I had good results with the left as well, although it’s not as well controlled as the right. I think I’m going to have to live with the differences. The current is about half a milliamp higher on the left side than the right even though it’s more recent.
I have the Abbott system. At the time of my first placement the hospital had not yet approved Boston Scientific and the Abbott had more control options than the Medtronic. I think it can direct current into four different depths of the lead with three different directions. I have a dedicated iPhone with an app I can use to increase/decrease the current within the parameters set by the programmer. I think if I were starting from scratch, I would lean towards the Boston Scientific. At least my programmer really likes the apps for Boston Scientific because they include actual imaging so you can see the parts of the brain you are stimulating. It’s not rechargeable. The procedure for changing the battery is a quick surgery. My battery for the first side was still good when I had my left side done so it lasts more than five years with unilateral DBS. Now that both sides are going, I suspect I’ll end up changing in five years. I’ll re-evaluate when the battery dies, and I may move to rechargeable.
