Burak Pekin, of Ankara has been battling the vocal and motor tics caused by Tourette's syndrome, a neurological disorder characterized by repeated involuntary movements and uncontrollable vocal tics, since he was a boy. His tics consisted of stomping "most of the time," sticking out his tongue and involuntary neck and arm movements. These movements became progressively worse and more difficult to control as he got older. By his third year in college, he was no longer able to suppress his motor or vocal tics, which included abrupt cursing and yelling, either in public or at home.
When Burak was 20, a psychiatrist in Istanbul diagnosed him with Tourette's syndrome and prescribed haloperidol. Describing the medication's side effects as "intolerable," Burak quit taking it and continued with psychotherapy during his two-year post-college service in the Turkish Army. By the time he finished his mandatory service, he had slipped into a deep depression - Tourette's was getting the best of him, even causing him to injure himself.
"I was very miserable," Burak says of that time in his life. "I was not able to work. I was not able to do anything."
Burak moved back in with his parents and rarely left the house for the next seven years. He said he had a hard time going out in public because "most people don't understand (Tourette's syndrome)." His mother, Nevin, was saddened but said she never lost hope that medical advancements would become available to help her son.
Then it happened. One day while flipping through the newspaper, Burak came across an article on a U.S. hospital's investigational use of Deep Brain Stimulation (DBS) for the treatment of Tourette's syndrome. Through DBS, the electrical activity in the brain is altered, allowing relief from symptoms interfering with normal daily functioning. Burak called a friend of the family who was a doctor. The doctor referred him to Cleveland Clinic.
Burak was put in touch with Ali Rezai, M.D., Chairman of the Center for Neurological Restoration (CNR) and Surgical Director of the Psychiatric Neuromodulation Center. In December 2004, Burak came to Cleveland for a month-long series of evaluations, consultations and testing. He flew back to Turkey and waited for approval for the surgery. In April 2005, Burak came back to Cleveland for the DBS.
Six months after his surgery, Burak was 90 percent tic-free and improving and the depression was gone. The surgery was not an immediate fix, however. The improvements happened slowly while Burak's stimulation devices and medication were tweaked and adjusted. But, he said, he knew not to expect a miracle from the surgery. "Dr. Rezai never promised 100 percent treatment," he says. "He was very honest and straightforward about what I could expect."
With his Tourette's under control, Burak has reclaimed his life and is now able to enjoy such things as concerts and movies with friends. "Life is good now - better," he says.
Note: The use of DBS for Tourette's syndrome is still investigational. The Cleveland Clinic CNR is enrolling patients in an investigational study on using DBS for severe and medication-intractable Tourette's syndrome. Patients must be referred by a physician.
