Surgery Offers Hope to Dystonia Victims

Twelve-year-old Josh Gaskin walks to the front door and shakes a visitor’s hand. While this gesture would seem routine for most adolescents, two years ago it would have been impossible for Josh.

By the time he had reached the fourth grade, Josh’s dystonia caused his right hand to involuntarily clench into a fist so tight that he could only open it by force. His feet turned inward, requiring him to wear braces. The symptoms had forced Josh to quit his baseball and basketball teams after six years of playing, leaving him depressed and angry.

Josh’s mother, Andrea, had read about an unusual procedure that might hold hope for her son. Deep brain stimulation (DBS) involves placing tiny electrodes deep in the brain. The electrodes are connected by wires running internally down each side of the neck to small pulse generators implanted under the skin of the chest.

The electrical pulses disrupt the brain signals that cause involuntary movement. The procedure had been used extensively to relieve Parkinson’s disease symptoms, and had recently been found to help some dystonia patients.

Andrea was intrigued. Still, DBS involves multiple surgical procedures. At the time, few procedures had been done for dystonia patients, and only a handful of them had involved children.

“Deep inside, I knew that this was going to be for us,” she said. “My husband was more hesitant…. You’re dealing with the brain and things can happen.”

But Andrea felt strongly. “The way I looked at it, why let it get worse before I make him better. The more your body starts twisting, the harder you have to work to put it back to what it was,” she said. “I didn’t want him go through any more suffering.”

In April 2004, Josh underwent DBS surgery at Mount Sinai Medical Center in New York. During the procedure, a metal halo was screwed into his skull to assure no movement. The doctor drilled a small hole in Josh’s skull and inserted the electrodes.

Josh was a awake for much of the six-hour surgery, because his doctors needed to ask him questions in order to place the electrodes most effectively. Two days after his surgery, Josh’s doctors inserted batteries into the device.

By the following day, Josh was able to play video games with his father at Times Square’s ESPN Zone. Within a month, he could walk without the foot braces. He began shooting hoops and hitting baseballs.

“I had forgotten how it felt to open my arms,” Josh said. “It felt good to go back to normal.”

Josh suffered a setback last June, when one of the leads caused a leakage of brain fluid, and the apparatus on one side of his body had to be removed. Within six months, his walking was worse than it had been before the surgery.

Last March, he returned to New York to have the device re-implanted, and has been slowly improving ever since. He can write again. He plays basketball and runs track at school. He hopes to re-join a sports league, and is practicing his skills. His speech remains slurred as it was prior to the surgery, but he hopes that it, too, will slowly improve.

Each month, Josh must visit the doctor to have his electrical settings fine tuned. He will need surgery to have his batteries replaced every three to four years.

Nevertheless, neither Josh nor his mother have any regrets. “It’s not for everybody, but for us, this surgery has been a blessing,” Andrea said. “We’ve seen a big improvement.”

Before the procedure, “I was angry, mad and sad. I didn’t know why I had [dystonia],” Josh said. “Now, I have a better outlook.”

As he recounted his story, Josh was asked about scabs on both his knees. They weren’t from surgery. He had been fooling around on his parent’s treadmill, put it on maximum and fell. Just like any other normal 12-year-old kid. — NSS