Paula: Thrilled to Have Her Life Back

This story recounts the experience of one patient who is receiving Medtronic DBS Therapy to reduce the symptoms associated with dystonia.* Please bear in mind that the experiences are specific to this particular person.

Living with Dystonia

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, vivacious woman they once knew and admired.

Paula's pain was so great that she couldn't sit down or walk for more than a few minutes at a time and she endured disfigurement – all the result of dystonia.

Eventually, Paula was forced to quit her job. Embarrassed by her appearance, Paula stopped venturing outside 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 she could to cope with the disease. She started regimens of oral medications and injection treatments. At one point, Paula received up to 20 injections of Botox¹ every few months. At first, these treatments helped stabilize her symptoms, but her situation had gotten "out of control," as she recalls.

Discovering Medtronic DBS Therapy

On the advice of her neurologist, Paula underwent surgery for DBS Therapy for dystonia.

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 Therapy, 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.

"I was nervous for my first battery replacement," she remembers. "I had finally found DBS Therapy and it was working so well for me. I was afraid that when they replaced the battery that it wouldn't work for me again. I was wrong! They replaced it, turned it on, and everything was fine."

After each replacement surgery, Paula has experienced some soreness and swelling at the incision site.

Risks of the Procedure and Stimulation

DBS Therapy requires brain surgery. Risks of brain surgery may include serious complications such as coma, bleeding inside the brain, seizures and infection. Some of these may be fatal. Once implanted, the system may become infected, parts may wear through your skin, and the lead or lead/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 your symptoms to return.

Medtronic DBS Therapy may cause worsening of some motor symptoms associated with your movement disorder, and may cause speech and language impairments. Stimulation parameters may be adjusted to minimize side effects and attain maximum symptom control. In patients receiving Medtronic DBS Therapy, depression, suicidal thoughts and suicide have been reported.

Celebrating Daily Victories

Today, Paula lives independently 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. She also volunteers with a national dystonia foundation.

"In my volunteer work I talk to people who are considering this treatment. Many of them have anxiety about the surgery and I can understand that. But I tell them it really is not bad."

Paula encourages those who are considering DBS Therapy to learn more and get answers to their questions, and she stresses that no question is silly.

"I was in constant, severe pain. Now I have none. The pulling and contractures in my muscles and joints is gone. Most people can't believe that I'm the same person. I'm just thrilled to have my life back."

1. Botox is a registered trademark of Allergan, Inc.

Next: Peter

*Medtronic DBS Therapy 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.

Medtronic invited this patient to share her story candidly. 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.

This therapy is not for everyone. Please consult your physician. A prescription is required. For a complete list of adverse events that have been associated with the therapy, please refer to Important Safety Information.