At a time he should have been enjoying his last couple of years of high school, Ed Cwalinski spent most of it bedridden, wracked by painful, debilitating muscular contractions caused by the neurological disorder dystonia.
I was curled up in a ball for two years, recalled Cwalinski, now 28. I was home-schooled. I couldnt bathe. I couldnt use the bathroom. You name it, I probably couldnt do it.
Medications provided no significant relief. His doctors say now that the disorder, which melted his 6-foot-3 frame down to about 160 pounds, was killing him.
Then, he and his parents heard about a procedure called deep brain stimulation that neurosurgeon Donald Whiting had done at Allegheny General Hospital in Pittsburgh for people with tremors of a limb.
Though not yet approved for dystonia by the Food and Drug Administration (its now approved under a humanitarian device exemption), it had been used for more than 20 other dystonia patients in North America.
In the surgery, an electrode powered by a battery in the chest is implanted in the brain and the electric signals are used to slow down overactive neural impulses to the muscles, Whiting explained.
Cwalinski wanted the surgery, even though Whiting told him back then that there was only a 50-50 chance of it helping his symptoms.
In March 2000, Cwalinski became, at age 18, the youngest person in the United States to get deep brain stimulation when an electrode was implanted in the left side of his brain. He was awake but under local anesthesia.
Improvement was virtually instantaneous, though he had symptoms such as a left-hand tremor and his head tilted to one side. He returned to school and graduated with his class. Another electrode was put in the right side of the brain five months later, and most of his remaining symptoms were alleviated.
Today, Cwalinski is the subject of a 10-year follow-up printed this month in Neurosurgical Focus, the journal of the American Association of Neurological Surgeons. Lead author is Whiting, who has over the past 13 years done DBS on about 400 patients.
The only visible signs of his disease are that he stands a little more upright than most of us and has a slight speech impediment.
He must undergo surgical replacements of his batteries periodically, but one will be replaced with a rechargeable version with a nine-year shelf life this fall.
He also takes small, daily doses of Klonopin, an anticonvulsant, and Artane, which is for tremors.