FROM HOMEBOUND TO TRAVELING, BIKING, AND RUNNING
This story recounts the experience of one individual who is receiving Medtronic DBS Therapy to manage symptoms of 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 prevent significant tremors and spasms. And he had to remain lying down for his wedding ceremony.
Dystonia is a neurological movement disorder that causes involuntary muscle contractions. These contractions force certain parts of the body into abnormal, repetitive, twisting, and sometimes painful movements or postures.
The stress of law school intensified Peter's symptoms. He developed back and cervical problems from his compromised posture, and experienced significant pain in his arms, legs and hands. Classified as "homebound" by Medicare, Peter ate on the floor, lying on his side.
Initial Treatments
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.
How DBS Helped Peter
As part of his work with the Dystonia Medical Research Foundation, Peter met Dr. Mahlon DeLong of Emory University. After examining Peter, Dr. DeLong recommended DBS.
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 was implanted with a Medtronic DBS system. As a result, he has been able to travel again. He now walks through the airport and no longer requires a wheelchair. He can also drive and sit straight up on the exercise bike at the gym.
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.
Peter now has very few visible symptoms of dystonia. He and his wife Sindee have traveled in Europe and the United States with little restrictions caused by dystonia, often taking long walks. He has now taken up running. “I hope to complete my first race soon.”
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."
Placing the DBS system requires brain surgery, which could have serious and even fatal complications including coma, bleeding inside the brain, stroke, seizures, and infection. Once implanted, the system may become infected, parts may wear through the skin, and the lead and/or 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 symptoms to return or worsen, which may be life-threatening. Medtronic DBS Therapy may cause new or worsening neurological or psychiatric symptoms.
In patients receiving Medtronic DBS Therapy, depression, suicidal thoughts, and suicide have been reported.
For more information, go to Important Safety Information.
“It has helped me immensely.”
While the effectiveness of DBS for dystonia has not been established and results differ for each patient, Peter is pleased with his results. "DBS has helped me immensely," he says. "I hope to improve even further and do even more of the things I used to do."
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. A prescription is required.
Information on this site should not be used as a substitute for talking with your doctor. Always talk with your doctor about diagnosis and treatment information.
*
Humanitarian Device - Authorized by Federal Law as an aid in the management of chronic, intractable (drug refractory) primary dystonia, including generalized and/or segmental dystonia, hemidystonia, and cervical dystonia (torticollis), in patients seven years of age or above. The effectiveness of the devices for treating these conditions has not been demonstrated.