For nearly all of his 31 years, Jeff Matovic lived his life in a body out of control.
Talking was often painfully difficult for him, and simple movements nearly impossible. His greatest wish was a simple one.
"It would just be really nice to be still for, you know, a period of time," Matovic said.
The quiet peace of sitting still was an unknown dream for Matovic, who has Tourette syndrome, a disorder that affects 100,000 Americans, according to the National Tourette Syndrome Association.
Many people think of Tourette patients as people who uncontrollably sputter out obscene language. But that particular symptom of the disease, known as coprolalia, only affects 15 percent of Tourette patients, and Matovic is not among them.
"Tourette syndrome is a disorder of tics," said Dr. Brian Maddux, a neurologist from the University Hospitals of Cleveland. "There's usually several such movements — including the production of sound — so somebody may grunt, or cough or sniff, sometimes actually say words."
For Matovic, just trying to say the simple sentence, "It's a sunny day in Cleveland, Ohio," would send him into a fit of flailing and grunting in an effort to get the words out. When he was asked to put his arms out in front of him, it seemed an impossible task. But that was before.
Under Control
Thanks to an experimental surgery, Matovic's once uncontrollable body is now controlled to the point that he can operate a computer, play video games and even challenge his stepchildren to a game of basketball at their home in Lyndhurst, a suburb of Cleveland.
"My outlook on life in general is truly — the sky's the limit now," said Matovic, who, along with his doctors, spoke exclusively to Good Morning America.
Jeff Matovic first showed symptoms of Tourette syndrome when he was just 3 years old. Pictures showing the little boy smiling belie the fact that his childhood was often frustrating and lonely. "I wondered, why do I have to be home ticking, lying in bed, trying to calm myself when everyone else is out having fun?"
Having fun wasn't his only challenge. Matovic's tics made finishing high school and college relentlessly difficult.
"I mean, can you imagine trying to read something and you're constantly doing this?" he said, arms moving. "And your eyes are fluttering and you're losing your place every two seconds."
Much Trial and Error
He tried medication after medication, and they all helped control his movements — but only for a while.
His wife, Debra, says she watched her husband's abilities to move and accomplish day-to-day activities disintegrate.
"Over the past year, when the medication stopped working — Jeff, he just stopped being able to do almost anything," she said.
By last year, no pill was working. Jeff Matovic could not hold a glass without breaking it, he couldn't work, he couldn't play with his stepchildren and he described every day as sheer torture.
"And when it came to the kids — oh, man — it tore my heart out, because it couldn't be," Debra said, starting to cry. "He couldn't go out and play basketball. He couldn't."
With no options left, Matovic began doing research on a procedure called deep brain stimulation, or DBS.
It involves having two electrodes placed in the brain and attached to a sort of pacemaker for several years. The procedure has been used to control the symptoms of patients with tremors, Parkinson's disease and other movement disorders.
So Matovic approached doctors at the University Hospitals. The only problem was that deep brain stimulation had never been used before on a Tourette patient in the United States. "When Jeff came to see us for the first time — it wasn't clear really that we knew what the target should be for Tourette," Maddux said.
"We pored over what we could do, what we couldn't do — what I could promise and what I couldn't promise," said Dr. Robert Maciunas, a neurosurgeon at the hospital.
A Groundbreaking Experiment
The team in Cleveland agreed to try this groundbreaking experiment on Matovic, knowing there were no guarantees. This past February, using a sophisticated system for mapping the brain, surgeons precisely inserted the electrodes, and later attached them to the pacemakers, hoping it would fix the impulses causing his tics.
But the big question was — would it work? It did. Matovic can walk easily down a hallway, and the sentence, "It's a sunny day in Cleveland," is no longer a problem for him to say. The arm motions are under control. Even his doctors were stunned at the operation's success.
"We were basically dragging our jaws on the floor," Maddux said.
The procedure had been tried three times in Cleveland, and the results have been good, but those surgeries were only done a few years ago, so no one really knows how effective it is over the long term. Still, doctors in Cleveland are hopeful because of the success of DBS in treating other movement disorders.
In addition to the surprise over the operation's success, there were plenty of tears.
"We were all just crying — everyone's mouth dropped — Dr. Maddox's mouth just hit the floor," Jeff Matovic said. "Nobody expected this result, especially this quickly."
"I was like, 'This isn't real, I'm dreaming, this isn't real,' and he came up and put a big old hug around me and it was real," Debra Matovic said. "I didn't feel him shaking or quivering or anything like that." Hands that once couldn't hold a glass will be holding a brand new baby in eight months. Debra just found out she is pregnant.
"I'm looking forward to this with open arms and open heart — to be able to bring a child into this world and really just be a part of it like I've always envisioned," Matovic said.
Unlike Matovic, whose problems are primarily physical, many Tourette patients suffer physical, neurological and psychological problems as well. The Cleveland team said the procedure would only work for that segment of Tourette patients who have primarily physical symptoms — but that could still offer hope to many thousands of people. And although he is the country's first Tourette patient to get this procedure, Matovic is hoping he won't be the last.
"There is hope," he said. "The results that I have seen — the feelings that I have felt — they're out there for other people too."
For more on the University Hospitals of Cleveland, go to www.uhhs.com.To find out more about Tourette syndrome, go to the National Tourette Syndrome Association's web site at www.tsa-usa.org/.
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