Over the next few months, guest blogger Susan Mollohan of Derry, New Hampshire will share her experience with deep brain stimulation surgery (DBS). In this first post, Susan discusses how she came to the decision to receive DBS. We’ll post updates on Susan’s story to the FoxFeed blog as her medical journey continues.
Please note: While a powerful treatment for many people living with Parkinson’s, this therapy does not treat all symptoms and isn’t suitable for all patients. Read more about deep brain stimulation.
A year ago, my neurologist at the Lahey Clinic in Burlington, Massachusetts broached the topic of DBS. I was diagnosed with Parkinson’s in 2009 at the age of 55, and since that time my medications have become less effective. Three years ago I was taking one Sinemet (carbidopa-levodopa) pill a day, but now I’m up to five. Two hours after my last dose has passed, my meds are already wearing off.
I was interested in DBS, but wanted to learn more about the procedure and how it could help manage my symptoms. A surgery of this magnitude requires careful consideration, and before I made a decision, I needed to do my research.
In DBS, thin wires called electrodes are implanted into one or both sides of the brain in the areas that control movement. The wires are then connected to a small device (much like a pacemaker), which sends electrical signals through the wires into the brain. These signals stimulate a small brain region and block the signals that cause some Parkinson's symptoms.
I sought the advice of a second neurologist from Massachusetts General Hospital, who said I was the perfect candidate for DBS because my medications have become less effective.
After these meetings, I began to seriously consider DBS. I learned that the ideal candidate is under 70 years old and is in good health. I fit both those criteria, but my decision was far from made.
I researched, read and gathered all the information I could. I spoke with others who had received the surgery and asked many questions. I discussed what I learned with my doctor to check that my information was accurate. My doctors also completed a formal evaluation and testing to determine if I was a proper candidate for the surgery, including an appointment with a neuropsychologist to ensure I was mentally and emotionally prepared for the procedure.
I’ve been asked how I know DBS is right for me, but the truth is, I don’t. When a person pays a dollar for a scratch ticket, they run the risk of losing that dollar or gaining thousands. This surgery is a risk, but I believe the pros outweigh the cons.
I’ve had Parkinson’s for seven years, and a lot of things have happened in that time. Seven years ago I was divorced, and now I'm happily remarried. Seven years ago I didn't have four step grandchildren and two more on the way. I want to be able to hold those children and not feel restricted because of my Parkinson’s. Seven years ago I could hike, but today I choose not to because of my symptoms. These are the things that make surgery worth it: time with my family and time to do the things I love.
One thing’s for certain — my disease is progressing. By choosing DBS, good things might happen. If I do nothing at all, my medicines will continue to become less effective and my symptoms will get worse.
I’m currently awaiting official confirmation from my surgeon that I’m eligible for the procedure. Once I’m cleared, we can proceed with the surgery. I’m scared, but I’m ready. I’ve done my research, I’ve made my choice and I’m ready to buy my lotto ticket.
Stay tuned as we post more on Susan’s journey with DBS in the coming weeks.