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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.
Peter was diagnosed with generalised 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.
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.
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.
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 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.”
The major risks of the DBS procedure include paralysis, coma and/or death, bleeding inside the brain (intracranial hemorrhage), leakage of fluid surrounding the brain, and seizures.
Side effects of brain stimulation include tingling sensation, and temporary worsening of the patient's disease symptoms, speech problems like whispering and trouble forming words and vision problems.
Peter initially experienced some involuntary pulling in his hand and arm before his stimulation parameters were adjusted. For more information, go to Important Safety Information.
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."
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.