10-year-old boy's crippling pain eased by pacemaker in his brain

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10-year-old boy's crippling pain eased by pacemaker in his brain

Surgery helps him walk, sit erect and ride his bike again...

.... He had to drop out of regular classes last year because he could no

longer sit erect in his seat. Activity only added to the pain he lived with

from dystonia, a movement disorder that causes painful, contorted postures.

Dystonia affects 300,000 people in North America. There was no effective

treatment until now.

Now, Nolan is walking with the help of a walker, riding a bike and is back

in school -- accomplishments he's achieved since his May 2003 surgery to

implant what commonly is called a brain pacemaker.

Kashat, a sixth-grader at Warner Middle School in Farmington Hills, is

believed to be one of the youngest people -- and perhaps the youngest -- in

the United States to undergo a procedure called deep brain stimulation...

Much like a pacemaker to control an irregular heartbeat, deep brain

stimulation places electrodes in brain regions associated with specific

movements. The electrodes are controlled by a battery pack implanted in the

patient's chest.

The procedure more typically is used to treat Parkinson's disease and

tremor, the two most common movement disorders.

Patients with those conditions are lining up for the deep brain surgery.

Unsubstantiated media reports have claimed that actor J. Fox, a

Parkinson's patient, is considering the surgery.

Less known is whether the procedure benefits patients with dystonia...

Junn said dystonia patients might benefit more from deep brain stimulation

than those with Parkinson's disease. That's because Parkinson's patients

often have other brain-related problems, such as memory loss and depression,

that pacemakers can't help, he said.

Nolan's parents began to see signs of the disease when he was 5. They were

savvier than most people in recognizing symptoms because Nolan's older

sister, now 14, has a milder form of dystonia.

Typical signs include awkward hand positions and changes in writing.

Progressively, it affects arm movements, causes contorted postures and robs

a person of the ability to walk or sit.

There's a test to diagnose hereditary forms, but many people don't get it

because insurance plans don't cover it, Junn said.

The surgery, typically a three-hour procedure, often is performed while the

patient is awake. Doctors place electrodes into brain regions to see which

functions the area regulates. Because of Nolan's age, they used general

anesthesia during the operation.

The surgery carries risks: One in 100 patients develop brain hemorrhages,

Junn said. It costs $50,000-$60,000 and sometimes is covered by insurance.

" We felt we had no other choice, " said Ayad Kashat, a Chaldean who came to

metro Detroit 22 years ago. He described his family's life before the

surgery as miserable...

For more information, call the Henry Ford program at or

Beaumont Hospital at .

Contact PATRICIA ANSTETT at or anstett@....

Copyright © 2004 Detroit Free Press Inc.