What is dystonia?

From the beginning of its Deep Brain Stimulation program in 2007, Cook Children’s has made treating young patients with dystonia a priority.

The second patient operated on was a dystonia patient and since then the majority of patients have had some form of this disabling and sometime painful condition.

“Dystonia can limit children in so many ways, impacting motor, cognitive and social development,” said Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’s. “The reduced independence experienced by these children also affects their entire family. Because medications have a limited effect on most forms of dystonia, we use DBS surgery as another tool to improve the lives of children affected by dystonia. Even small gains in motor function or reduced pain can be life changing for these children.”

Dystonia is a syndrome of intermittent or continuous sustained muscle contractions, frequently causing twisting and repetitive movements or abnormal postures of virtually any part of the body.

Here are some quick facts about dystonia:

• Dystonia patients are sometimes misdiagnosed with other muscular diseases or with claims that it’s purely psychological.

• It’s a symptom or sign of an inherited or acquired brain disease that usually involves the basil ganglia – a series of structures located deep in the brain responsible for motor movements.

• The goal of DBS surgery is to make significant improvements to the quality of life for patients. Patients may not see improvement for three to six months.

• Dystonia can affect multiple parts of the body or just one such as legs, arms, neck, face, eyes and vocal cords.

• A goal of DBS surgery is to prevent the progression of dystonia from spreading throughout other areas of the body.