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.
In 1988, Paula's physical pain started to affect her professional relationships and her career. Her colleagues at the radio station where she worked couldn't understand what was happening to the enthusiastic and vivacious woman they once knew and admired.
Living with Dystonia
Paula was in a great deal of pain. She couldn't sit down or walk for more than a few minutes at a time. She tried everything to cope with the disabling pain and disfigurement she later understood as the result of 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.
Eventually, Paula was forced to quit her job. Embarrassed by her appearance, Paula stopped venturing outside of her home. She became depressed, and worried that she would never again be able to do the things she loved, like playing with her nieces and nephews, working, and traveling.
Paula tried everything to cope with the disease. She started regimens of oral medications and injection treatments. At one point, Paula received up to 20 injections of Botox® every few months. At first, these treatments helped stabilize her symptoms, but her situation had gotten "out of control," as she recalls.
How Activa DBS Helped Paula
On the advice of her neurologist, Paula underwent surgery for Activa DBS for Dystonia Therapy.
After the procedure, Paula spent time reorienting herself to her own body. "I'm still amazed that I can actually pick up objects with my hands," she says. "Before Activa DBS, my body did whatever it wanted. I had no control over it."
Risks
The major risks of the Activa DBS procedure include 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. Please refer to the Risks and Side Effects for more information.
"I'm thrilled to have my life back.."
Today, Paula lives on her own and maintains an active lifestyle. She can cook, swim, exercise and meet friends for dinner—all activities she had to put on hold due to dystonia. "Most people can't believe that I'm the same person," says Paula. "I'm just thrilled to have my life back."
Botox is a registered trademark of Allergan, Inc.
