14 years after being diagnosed with Young Onset Parkinson's Disease - 17 years after motor symptoms first were noticed - I had bilateral STN-DBS done in November 2010.
Unlike many people who choose to undergo this surgery, I didn't want to know all the facts about it. I knew that a successful DBS could turn back the clock on my symptoms to where they had been 10 years earlier. I knew that a successful DBS could allow me to function at a level I reached during the peak of my medications. I knew that my world was getting smaller and smaller due to limitations PD was forcing on me. My meds were maxed out and my response to them erratic with sudden "OFFs" and freezing when I would walk. I never planned to do anything before 2pm because by then I would have had enough doses of my meds to be sure - as sure as I could be! - that I would be "ON" for whatever I needed to do.
I also knew that it was brain surgery and that I would have to be awake during the surgery. I knew there was many risks associated with the surgery. So I didn't choose to have the surgery completely blind to what could go wrong, but I just chose to focus on the benefits rather than worry about the risks involved.
Timing of my surgery was a major factor for me. My sons were both in college, the youngest just a freshman, when I went in for surgery so I didn't have kids living at home to take care of. I also had to get over the mindset that DBS was the last hope - the silver bullet between me and advanced PD because surely at 50 years old, I couldn't be at the end! With the encouragement of my doctor and discussion about other alternatives available to me (ex/dopamine pump), I came to realize that DBS was was a way to improve the quality of my life NOW.
So I had the surgery done in three stages. I am someone who was fortunate enough to have a great response to DBS! Two weeks after the final surgery in which the stimulator(battery) was placed in my chest, my husband and I walked 1.5 miles uphill to have breakfast at 6am before walking home again! Before DBS, I couldn't have been "ON" to walk at 6am and I sure couldn't walk 1.5 miles each way! My handwriting returning to me was a real gift although a gift that has waned over time. My meds went down from 26 pills per day spread over 6 doses to 5 pills spread out in two doses. I dropped two PD meds altogether!
DBS has been a miracle for me. It's not a cure for PD, but it sure feels like one. Recently, I went off my meds to be filmed by my doctor for an educational film about DBS. I was first filmed off my meds but with the DBS stimulation on. That wasn't too bad - I still was very functional. But, I was then filmed off my meds and with the DBS system turned off. Full blown PD symptoms came back unabated and it was awful! That experience made me really grateful all over again that I had had DBS surgery.
Problems? None with the surgery itself. PD meds tend to keep blood pressure low so with the reduction of my PD meds, my blood pressure went up - a family genetic trait - so I'm now taking medicine to keep it down. Bladder urgency also became a problem, so I now take medicine for that. My speech becomes wispy at times too when the stimulation is turned up too high.
Benefits? A million and one small things that I can do now that I couldn't do or were hard to do before the surgery! My favorite benefit is the lessening of worry by those who love me - my family has been given a reprieve due to the improvement DBS has made in me. And if there were no other benefit than that, it is enough to have made DBS worth it for me.