Over the last few months, guest blogger Susan Mollohan of Derry, New Hampshire shared her experience with deep brain stimulation surgery (DBS). This is her third and final post, highlighting her procedure and recovery. Read about Susan's decision to get DBS and how she prepared for the surgery.
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.
After one and a half years of consideration and preparation, my DBS procedure is finally complete. I'm happy to say I'm doing well. On June 30 I had my first surgery in which wires called electrodes were placed in my brain in the areas that control movement. I remained partially awake in a "twilight sleep" to ensure the surgeon positioned the electrodes in the right place. I was extremely anxious, but through it all my humor remained intact.
While starting to go into the twilight sleep, I heard someone in the operating room say, "I've never done one of these procedures."
My eyes shot open as I said, "You're not going to do this one!"
I quickly learned from a hysterical nurse that this was spoken by an observing intern. I was safely under the care of my trained surgeon!
The doctors placed the electrodes in various places in my brain to see how my body would react. At one point they hit a spot, and my tremors started going 90 miles an hour. Other spots made me lose my speech and made my voice sound unfamiliar and slow. The doctors placed the electrodes in an area of the brain that controls movement, and I became emotional when I saw that my right hand, where I experience tremor, was able to open and close almost as fast and freely as my left. It's been eight years since I've been able to do that.
I spent a day and a half in the hospital and was sent home with instructions to rest. Each day I got stronger, and the "fuzzy" feeling in my head became less pronounced.
On July 14 I returned to the hospital for the second stage of my DBS procedure in which a small battery-powered device called a pulse generator (much like a pacemaker) was implanted in my chest. A second incision was made in my head and the wires from my electrodes were strung through my neck to connect to the generator, which can be adjusted over time to settings that work best for me.
Leading up to the procedure, I focused a great deal on the actual surgery and hadn't really thought about my recovery. The incisions were tender and the wires hurt the side of my head and neck. It was more than I had anticipated, but each day I felt a little better and stronger. My laptop was my saving grace as I busied myself preparing for an upcoming Team Fox fundraiser to benefit the New England Parkinson's Ride and The Michael J. Fox Foundation.
Last week I met with my doctor to discuss the settings on my pulse generator. I'm pleased to say it's working well -- I've not had one tremor, and my toes no longer curl. In the past I was taking five Sinemet (levodopa-carbidopa) a day, and I'm now taking only two. I'm back on my bike preparing for the New England Parkinson's Ride on September 10. No, I won't do my usual 50-mile ride; 30 will be ok this year. But I can truly and sincerely say the DBS surgery was worth it.