(NEW YORK) — Robbie Lettieri calls the decade he lived with Tourette syndrome a “nightmare.”
“I try not to think about it,” said Lettieri, who was diagnosed with the neurobiological disorder that brings on sudden uncontrollable motor tics at the age of 7.
Lettieri’s case was so severe — tics that would last for hours and sometimes ended in broken bones — that his neurologist recommended deep-brain stimulation, an experimental procedure that requires surgically implanting a device deep in the brain. With the switch of a button, the device emits electric impulses to specific parts of the brain that help to control the misfirings that could be causing the tremors.
While the procedure is often done while the patient is awake, Lettieri’s tics were so severe that, when he underwent the surgery at the age of 16, he had to be placed under anesthesia.
“Robbie’s tics were severe,” Dr. Alon Mogilner, his neurosurgeon at North Shore University Hospital on Long Island, said. “It’s the worst I’ve ever seen. There was no way we could do this procedure without him asleep.”
Lettieri and his parents, Debbie and Jay Lettieri, of Long Island, N.Y., saw changes immediately following the surgery. Today, three years later, he has only had a few small tics.
“I woke up and it was like, ‘Wow, I actually am in full control for the first time,’” Lettieri told ABC News’ chief medical editor, Dr. Richard Besser. “And I’m experiencing this whole world on my own and I do everything that a normal person can do.”
Lettieri is now a sophomore film student at the Pratt Institute with a 4.0 GPA. He’s also lost 120 pounds.
“It’s been the most challenging and most incredible three years of my life,” Lettieri said.
Lettieri’s parents, Debbie and Jay, who had to warn fellow moviegoers that their son had Tourette’s and had to manage the 42 prescriptions Lettieri was prescribed over a six-year period, say the whole family is reaping the benefits of the surgery.
“We all have our lives back,” said Jay. “To be able to watch him grow, move on with life, chase his dreams, and just go forward.”
“He’s incredibly happy and we’re incredibly happy,” said Lettieri’s mom, Debbie.
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