Paula's Story

DBS received CE Mark in 2003 for primary dystonia including generalised 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.

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 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 travelling.

Initial Treatments

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 stabilise her symptoms, but her situation had gotten "out of control," as she recalls.

How DBS Helped Paula

On the advice of her neurologist, Paula underwent surgery for Medtronic 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, my body did whatever it wanted. I had no control over it."

Risks of the Procedure and Stimulation

The major risks of the DBS procedure include paralysis, coma and/or death, bleeding inside the brain (intracranial haemorrhage), 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.

For more information, go to Benefits and Risks.

"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.

This story reflects one person's experience. Not every person will receive the same results. Talk to your doctor about your treatment options.

Last updated: 22 Sep 2010

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