Searching for Stillness: Tourette's Patients Become Medical Pioneers

Sept. 17, 2007— -- "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

'No Reason to Live'

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.

Deep Brain Stimulation

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."

Breathtaking Results

After operating inside Matovic's brain, doctors implanted two small pacemakers below his collarbone, in effect those pacemakers are the "battery" to stimulate his faulty brain cells. When the pacemakers were turned on, it was almost like a magic wand. Matovic could hold his arms out perfectly straight and walk in a straight line, without his usual jerky convulsions.

"The results take my breath away," said Maciunas.

"Never did I dream that three years, almost three years later, that here I am," said Matovic. "We were so used to taking the elevator because all my life it was so much easier than trying to climb stairs with all my tics, and my dad just went to reach for the elevator button. I said 'Dad, let's take the stairs.'"

Matovic is married now and lives near Cleveland with his four children. It's a blissfully ordinary life.

"Just peace. I feel peace, see peace and I live peace," said Matovic.

Maciunas said, "It was a wonderful moment to realize that this young man who had risked everything with no guarantee of benefit was going to have a remarkable life-changing result from this operation."

'Can You Imagine Me Being Normal?'

But could the procedure be just as life-changing for other patients, like James Michael Veazey? Veazey and his family saw a report of Matovic's incredible story on ABC News.

"By the time it ended I was in tears," said Veazey's mother, Jill Veazey. "James Michael said, 'Can you imagine me being normal'? And it wasn't until that moment that I realized that he didn't feel like he was normal."

By the time Veazey was 13, it was clear that drugs to control his Tourette's were not working.

"I would lean over the desk and I would jump and like kick my legs up, like lift them up," he said, "and I would just constantly move my arms. … I couldn't really talk because my vocal tics were so bad."

Jill said, "They had originally told us that after puberty it would pretty much go away, and we'd hardly see any tics. Well, that didn't happen. … The tics were just getting worse and worse."

Veazey struggled through high school — because of his twitching, he was unable to hold a book to read, unable to sleep at night, unable to escape ridicule. "It was hard as a mother to watch him and watch the kids make fun of him," said Jill.

"I truly felt that he hadn't been happy for years," said his father, James Veazey. "As things got worse and worse there seemed to be no hope."

James also had feelings of guilt, because he learned that his own occasional grimaces were actually mild Tourette's.

"With me having Tourette's also and then knowing it's hereditary and all that, I mean I felt quite a bit responsible … thinking yeah, this is my fault," James said.

Sudden Stillness

The Veazeys called University Hospitals of Cleveland and learned there would be five patients in the second trial, and that the medical and travel expenses would cost about $75,000.

"I said you tell us when to be there and we're there," said Jill.

It seemed like all of southeast Texas sprang into action to raise the money. Local telethons and neighborhood businesses raised every penny. At the airport send-off, Veazey left Texas, hoping that when he returned he'd be a different man.

Maciunas, the same doctor who performed the life-changing surgery on Matovic, was ready to try again. The surgery took all day, again, the patient awake so they could find the problem area deep inside Veazey's brain. After the surgery, the pacemakers gradually adjusted to stimulate his brain at just the right frequency, and then came the moment everyone was waiting for.

"All of a sudden everything comes to a dead stop," said James.

Finally there was stillness. The young man whose hands shook uncontrollably was a regular teenager who could type text messages into his cell phone. Veazey said that his first reaction was to feel "relaxed."

"I can't really explain the feeling, it was just, not having to move," he said. "You just sit there and [are] able to sit there, just like we are today."

There's nothing that's gonna stop me," he added. "I love my life."