"It would just really be nice to be still for, you know, any given period of time," says 31-year-old Jeff Matovic.
Imagine having a disorder so severe, so debilitating, that you would ask doctors to conduct a surgical experiment on your brain. Matovic was a man at war with his own body 24 hours a day and he did just that.
Watch the story on "Primetime Medical Mysteries" Wednesday at 10 p.m. EDT
Matovic suffers from the uncontrollable, repetitive tics of Tourette's syndrome, an inherited brain disorder that doctors still don't completely understand. For most patients, Tourette's disappears after childhood, but one in 10,000 is like Matovic. (CLICK HERE for more information about Tourette's syndrome.)
"It's like a pressure cooker with steam," he said. "That's how it always feels. I just reach a point. … It doesn't matter what's going on, it just, it's just got to go."
It began at age 3 with small tics and his doctors said it was nothing to worry about. But by the time he was 10, Matovic was having full dramatic body shudders. As a teenager, he missed days of school as he tried different doses of medications, and team sports became more and more difficult. By the time he got to college, he had so much trouble holding a textbook that a roommate had to read the words into a tape recorder. Matovic graduated, but unable to hold a job, he planned his suicide as life became unbearable.
"There were times when my bargain with God was, you know what, you let me down again. There's no reason to live," he said.
"These people are the tragedy of this disease as they become more and more disabled by these all-consuming tics that prevent them from living a useful life or even a life of dignity," said Dr. Robert Maciunas, from University Hospitals of Cleveland.
Matovic heard about a radical procedure called deep brain stimulation — or DBS — used to treat Parkinson's disease and others with debilitating tremors. It had never been tried on a Tourette's patient in the United States.
After doctors told Matovic that nothing more could be done for him, he took an amazing gamble: He called the University Hospitals of Cleveland and begged doctors to perform deep brain surgery on him. A willing guinea pig, he would be their first Tourette's patient, but not their last.
"He wanted to take that risk and we thought … that it was reasonable and right to proceed, really out of compassion for him," said Maciunas.
"I went in and said look, I'm desperate," Matovic said.
Doctors believe that Tourette's syndrome may be caused when a cluster of cells deep within the brain continuously misfire. During DBS, with the patient awake and conscious, doctors open the brain to implant tiny electrical stimulators into the basal ganglia, the center of the brain where these cells are found. The tissue in the brain does not sense pain and Matovic needed to stay awake so doctors could test where the stimulation was working.
"I'm hearing all the sounds of the operating room … the drilling and all that," said Jeff, "Just thinking to myself … they're inside my brain."