Deep Brain Stimulation: Sam's Story

FORT WORTH, Texas (Ivanhoe Newswire) -- It's a painful syndrome that robs children of their youth, distorting their muscles and making it difficult to walk. Now surgeons are going inside the brain to fix the problem. One boy armed with a video camera takes us inside his battle and victory. This is Sam's story.

"I've had dystonia for close to a year," Sam Gladen told Ivanhoe. "By March 2007, I couldn't walk."

One day, Gladen fell down and was never the same. He kept a video log of his crippling disease.

"To anybody who is watching this, just to watch it and doesn't know what it's like to have your childhood ripped away: It hurts," Gladen said.

Gladen has dystonia, a neurological disorder that causes muscle contractions, painful movements and abnormal postures.

"Don't think your life is over just because you have a leg brace and people stare," he said.

Gladen is one of the first dystonia patients to undergo deep brain stimulation to ease his pain.

"We like to call it the pacemaker for the brain," John Honeycutt, M.D., pediatric neurosurgeon at Cook Children's Medical Center in Fort Worth, Texas, said.

Dr. Honeycutt placed electrodes in Gladen's brain that deliver constant pulses.

"We're re-wiring the brain," Dr. Honeycutt explained.

The pulses help to keep Gladen's muscles relaxed. The surgery takes six hours and part of the surgery is done while the patient is awake.

"To see if the stimulation is doing what we want it to do and that there are no side effects," Dr. Honeycutt said.

Two years after surgery, Gladen and his little brother have traded in their video camera for something more age appropriate -- a football.

"I can walk around with my friends," Gladen explained. "It's just easier,"

He hopes his story will help others. "This part of your life is suckish and screwed up, but it gets so much better down the road," he added.

Gladen knows that firsthand.

Every five years Gladen will have to get the batteries in his brain pacemaker recharged. Deep brain stimulation does carry the risks of any brain surgery, which includes infections, stroke and brain damage, and patients usually need to continue taking medications. Current treatment for dystonia includes physical therapy, medications and Botox to relax the muscles.

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