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The letters O-C-D have become a punch line to describe people who make lists or wash their hands a lot. But for some people with obsessive-compulsive disorder, the intrusive thoughts and rituals are severely disabling and don't respond to drugs or behavioral therapies.
So doctors have been trying a new treatment for OCD: deep brain stimulation.
Deep brain stimulation is best known as a way to reduce the tremors of Parkinson's disease. A surgeon places wires deep in the brain that carry electrical impulses from an implanted device a bit like a pacemaker.
In 2009, the FDA approved the treatment for some adults with really bad OCD. Since then, about 50 OCD patients have been treated. One of them is "Mike," a man in his late 40s who agreed to talk if his real name wasn't used.
A lot of Mike's compulsions involve cars. Before he gets in one, he says, he feels compelled to check the doors, the brakes, the tires — sometimes more than once. And once he's on the road, Mike says every bump can make him wonder if he's just hit something.
One night, Mike's OCD actually made it impossible for him to drive through a quiet neighborhood.
"I was driving around for 30 minutes to 45 minutes," he says. "I'd go back where I thought I'd hit something. Go check it. And I'd have to do that until it felt just right. And then sometimes when I was rolling around to go back and check again, I would roll over something else. So now I have two things to check."
The police stopped him twice that night to ask if he was casing the area.
For nearly three decades, Mike tried the usual treatments: prescription drugs for depression and anxiety, and a type of behavioral therapy called exposure response prevention. But he was still constantly checking faucets so the house wouldn't flood, and light switches so there wouldn't be a fire. He couldn't hold a job. He was living with his parents.
"A couple of years ago I was, like, just kind of alone, no friends — and just wracked with this stuff day in and day out and, you know, was just miserable," he says.
So Mike began considering extreme measures. He knew that his symptoms might get better if surgeons removed a small part of his brain or if some brain tissue was destroyed using high-intensity radiation.
But another option came from Mike's doctor, Ben Greenberg, a psychiatrist at Brown University Medical School and a researcher at Butler Hospital in Providence, R.I.
'My Mind Was Free'
Greenberg offered Mike a chance to take part in a study of deep brain stimulation — something that's been tried on only about 50 OCD patients in the U.S.
Stimulation has the advantage of being reversible, Greenberg says. "But it does involve holes in the skull, and indefinitely having devices in you, and being tied to a center that can program these devices."
Stimulation helps about half the people who get it, probably because it's altering brain circuits involved in mood and behavior, Greenberg says.
It does not make people's symptoms disappear, though, he says. "What they get is a lot more hours in their day and a lot more ability to function, because the hours are not consumed by these intrusive obsessions and these irresistible compulsions."
Deep brain stimulation is a good option for people who've run out of other options, says Jeff Szymanski, executive director of the International OCD Foundation.
After years of unsuccessful therapy, Szymanski says, people begin to feel "not only very debilitated, but very demoralized and very desperate." He says some become unable to leave their houses or take care of themselves.
And in many cases, deep brain stimulation can help.
Mike is one of the success stories. But he didn't find out until recently. Because he was part of a study, he spent three months not knowing whether his device was on or off. And he wasn't feeling any better.
Then he made a fateful visit to Dr. Greenberg.
"He turned it on probably a little less than two months ago, and I could feel immediately a big difference," Mike says. "I knew at that point that it wasn't on the first three months."
Mike says the treatment has greatly reduced his OCD symptoms. "It was really like my mind was free of this stuff that had been in there for years, and it was easier for my brain to turn it off a little bit," he says.
He says he still checks on things when he's driving a car, but "just a little bit." Mike says behavioral therapy is working for him now, and he is optimistic about getting a good job and living on his own.
He's also feeling confident enough to fly to the West Coast this week. Mike will be one about 1,100 people attending the International OCD Foundation conference, which starts Friday in San Diego.