Paula's Story Deep Brain Stimulation for Dystonia
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.
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.
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 learned was 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, repetitive, twisting, 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 shots of Botox® every few months. At first, these treatments helped stabilize her symptoms, but her situation had gotten "out of control," as she recalls.
On the advice of her neurologist, Paula decided to have treatment with DBS 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 DBS, my body did whatever it wanted. I had no control over it."
It took time for Paula to get used to the neurostimulator that was placed under the skin in her upper chest area. "For about six months, when I would turn side to side, there was a slight delay in the movement of the device. Then, tissue settled in around it and now I don't feel it at all when I move."
Since her first surgery, Paula has had the neurostimulator battery replaced several times. After her most recent replacement, her stimulation settings were lowered. Now, her battery is lasting about 26 months as compared to 14 months at the higher settings.
After each replacement surgery, Paula has experienced some soreness and swelling at the incision site.
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.
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."
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.
BOTOX® is a registered trademark of Allergan, Inc.
*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.
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.