Medtronic invited this patient to share his story candidly. Not everyone who receives Medtronic DBS Therapy will receive the same results as this individual. Some people may experience significant symptom relief from DBS Therapy, and others may experience minimal symptom relief. DBS Therapy is not for everyone, so it's important to talk with your doctor about the benefits and risks.
Rick, a biomechanical engineer who used to develop heart pumps, is right at home when it comes to implantable medical devices. So when his doctor recommended Medtronic DBS Therapy for Parkinson's, he was open to the idea — but wanted to know more.
"I had never heard of DBS, but I learned real fast," Rick said. "I wanted to make sure it was safe since it was a fairly new therapy at the time I was considering it. I checked the Food and Drug Administration database that lists adverse events involving medical devices, and at that time the only DBS failures I found were related to the lead wires, not the device itself," he said. "I felt that the risk of infection or some bleeding from the leads was minimal compared to the benefit of getting my life back."
In the 5 years since his diagnosis, Rick's symptoms had gotten worse. "My left hand was shaking a lot, and I was having trouble walking. I did what I call furniture walking — I'd grab furniture to steady myself as I crossed a room."
Rick tried a lot of medications, but nothing seemed to work. "I'd ramp up the dosage of a medicine until I experienced the side effects, and then I'd switch to a different medication."
"I was taking medication every 3 hours, but was only without symptoms for half an hour during that time. I knew I needed something beyond medication."
Rick was a little nervous about his DBS procedure, especially for lead placement when he'd be awake. "It's kind of freaky that you're awake during surgery," he said, "but as an engineer, I was intrigued by the whole process.
After the surgery, "the only surprise was that my face swelled up. My forehead was puffy and my eyes were closed, but the swelling only lasted 2 days."
Soon Rick was home. "I remember sitting on my patio, with tears streaming down my face. My mom, who was visiting, asked me what was wrong. I said it was nice to just sit and finally feel relaxed."
Implanting DBS Therapy carries the same risks associated with any other brain surgery. This may include serious complications such as coma, bleeding inside the brain, seizures, and infection. Some of these may be fatal. Once implanted, the system may become infected, parts may wear through your skin, and the lead or lead/extension connector may move. Medtronic DBS Therapy could stop suddenly because of mechanical or electrical problems. Any of these situations may require additional surgery or cause your symptoms to return.
Medtronic DBS Therapy may cause worsening of some motor symptoms associated with your movement disorder, and may cause speech and language impairments. The stimulation may be adjusted to minimize side effects and achieve maximum control of your symptoms. In patients receiving Medtronic DBS Therapy, depression, suicidal thoughts, and suicide have been reported. Occurrence of falls has also been reported in patients with Parkinson’s disease.
Rick tells people who have just started deep brain stimulation to be vocal about how their stimulation settings are working, especially within the first months.
"It took 12 weeks of trial and error before we found the right settings for me. It turned out I needed my stimulation turned up very high, which is unusual."
"You have to make noise if you’re not happy with your settings," he said. "Doctors will assume no news is good news."
Carol, Rick's wife, also had some advice. "Develop a relationship with your programmer, and get their direct phone number. We have Rick's programmer on speed dial," she joked.
"While you need to be in constant communication with your healthcare team, it's also good to have a support network of people who've been through it."
Rick is active in several support networks. He talks to people considering DBS through Medtronic Support Link®. He answers their questions and describes his experience.
Also through the Muhammad Ali Parkinson Center near his home in Phoenix, Arizona, he meets regularly with people who have DBS or who are thinking about getting it. And he moderates an online discussion group.
Rick is quick to tell people that his treatment hasn't always been smooth. Within the first week of his implant, he got an infection near his lead, and the lead had to be replaced. Nine years later, Rick noticed some skin erosion near his collarbone, where the battery was implanted, so his doctor decided to move the battery to his abdomen. Then he developed another lead infection and had it replaced.
But there was one extra surgery Rick welcomed — it was to receive a rechargeable Medtronic DBS system. "I jumped at the chance to get that. Since my stimulation level is high, I was churning through batteries. I'd need a new neurostimulator every 14 months. Now I just recharge my battery every other day for an hour."
Rick considers any complications he’s had just minor setbacks.
"While no one wants another surgery, DBS is giving me the luxury of enjoying my life and enjoying being with my 4-year-old son, so it's worth an occasional inconvenience. I'd do it again in a heartbeat."