Peter: Back on His Feet

This story recounts the experience of one patient who is receiving Medtronic DBS Therapy to reduce the symptoms associated with dystonia.* Please bear in mind that the experiences are specific to this particular person.

Living with Dystonia

Peter was diagnosed with generalized dystonia when he was a teenager, and progressive symptoms left him unable to walk or stand upright.

By the time Peter entered Carnegie Mellon University, where he earned his bachelor's and master's degrees, he had to sit on his right arm to minimize significant tremors and spasms. After graduate school, Peter worked for the governor of Pennsylvania before enrolling in law school.

The stress of law school intensified Peter's symptoms. He developed cervical and back problems from his compromised posture, and experienced significant pain in his arms, legs and hands. He worked as a litigator for seven years before being classified as "homebound" by Medicare. By that time, Peter could not stand, sit, or walk. He ate while lying on his side on the floor and spent most of his time on the couch.

Peter's physicians treated his condition with a variety of medications. But some medications became less effective, and he was unable to tolerate the severe side effects of others.

Discovering Medtronic DBS Therapy

As part of his work with the Dystonia Medical Research Foundation, Peter met a physician familiar with Medtronic DBS Therapy. After examining Peter, the physician recommended DBS Therapy.

Peter was implanted with a Medtronic DBS System. He experienced no complications during the procedure, except that he was unable to move one side of his body for a few minutes. Shortly thereafter, the situation resolved.

Peter had two neurostimulators implanted – one for each side of his body. He spent one night in the hospital when each one was placed. Since then, he has had the batteries replaced each year.

"To me, the battery replacements aren't a big deal," he says. "The benefits enormously outweigh any inconvenience."

Risks of the Procedure and Stimulation

Peter's speech is slightly impaired, and he believes it is related to DBS Therapy. "It is very minor," Peter explains. "Depending on my settings, I have some tongue issues that make it hard to say some words. The speech can sound slow sometimes."

DBS Therapy requires brain surgery. Risks of brain surgery 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. Stimulation parameters may be adjusted to minimize side effects and attain maximum symptom control. In patients receiving Medtronic DBS Therapy, depression, suicidal thoughts and suicide have been reported.

Celebrating Daily Victories

Peter is back to traveling, and most recently spent time exploring Europe. He now walks through the airport and no longer requires a wheelchair.

Peter is as physically fit as he has been in years. He can sit straight up on the exercise bike at the gym and is training for a running race. He even enjoys long hikes. When he is not traveling or working out, Peter enjoys volunteering with the Dystonia Medical Research Foundation.

"I couldn't do any of these things before because I couldn't stand, sit or walk," he says. "This is the most amazing thing that ever happened to me. I am enjoying my life and am so grateful for DBS Therapy."

"It has helped me immensely," he continues. "I have no visible signs of dystonia. I hope to improve even further and do even more of the things I used to do."

Next: Victory Gallery

*Medtronic DBS Therapy received a Humanitarian Device Exemption from the US Food and Drug Administration (FDA) in April 2003 for primary dystonia including generalized and segmental dystonia, hemidystonia, and cervical dystonia. It is indicated for individuals 7 years of age or older as an aid in the management of chronic dystonia when symptoms of the disease are not adequately controlled by medications. The effectiveness of this device for this use has not been demonstrated.

Medtronic invited this patient to share his story candidly. Not everyone who receives Medtronic DBS Therapy will receive the same results as the individual in this story; some people may experience significant symptom relief from DBS Therapy, and others may experience minimal symptom relief. Talk to your doctor to determine if Medtronic DBS Therapy is right for you.

This therapy is not for everyone. Please consult your physician. A prescription is required. For a complete list of adverse events that have been associated with the therapy, please refer to Important Safety Information.