The following is one patient's experience with Activa® DBS Therapy to manage some of the movement-related symptoms of primary dystonia. Results vary, and not every response is the same. Please refer to the Important Safety Information and the Risks and Side Effects for additional information.
Activa DBS 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.
Peter Cohen 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. And he had to remain lying down for his wedding ceremony a few years ago.
Living with Dystonia
Dystonia is a neurological movement disorder that causes involuntary muscle contractions. These contractions force certain parts of the body into abnormal, contorted, 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 he developed tolerance to some, and was unable to tolerate the severe side effects of others.
How Activa DBS Helped Peter
As part of his work with the Dystonia Medical Research Foundation (DMRF), Peter met a physician familiar with Activa DBS Therapy. After examining Peter, the physician recommended Activa DBS.
Peter began using Activa DBS for Dystonia Therapy. 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.
Risks
The major risks of the Activa DBS procedure, paralysis, coma and/or death, bleeding inside the brain (stroke), 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 optimized. Please refer to the Risks and Side Effects for more information.
"It has helped me immensely."
While the effectiveness of Activa DBS has not been established and results may differ for each patient, Peter is pleased with his results. "Activa DBS has helped me immensely," he says. "I hope to improve even further and do even more of the things I used to do."
