Obsessive-Compulsive Disorder: Serious Business

Obsessive-compulsive disorder isn't TV's eccentric Detective Monk counting chandelier bulbs at a crime scene -- it's a serious condition that, at its worst, disrupts people's ability to function day to day. For most people, a specific type of behavior therapy is enough, alone or with medication. For some, the disorder requires intensive, daily treatment. And for the minority who still aren't helped, brain surgery may become an option.

Experts talked to U.S. News about treatment choices for people struggling with severe or extreme OCD.

"Taken Out" by OCD

Gerry Radano of Westchester County, New York, is an outspoken advocate for OCD patients, and she describes the Gamma Knife radiosurgery she went through 15 years ago as a life-changer.

Until she was about 40, Radano enjoyed a "big, tremendous life" as a flight attendant, real-estate business owner, wife and mother. Then, she says, "I was taken out by OCD." She believes extreme stress -- her mother's terminal cancer combined with her own difficult pregnancy -- triggered the onset of her symptoms.

Radano grew terrified of germs. "I was washing my hands over 200 times a day," she says. "I was changing my clothes about eight times a day. I was taking every kind of medication under the sun. I sprayed a giant can of Lysol every day."

Over the next decade, she had a few stays in psychiatric hospitals, one lasting four months. While hospitalization helped at the time, she says, "When I went home, I was back to ground zero."

Disruptive, Unwanted Thoughts

Affecting about 2.5 percent of the population at some point, obsessive-compulsive disorder is the fourth-most common psychiatric problem in the United States, says Bradley Riemann, clinical director of the OCD Center at Rogers Memorial Hospital in Wisconsin.

"Obsession is an unwanted thought or image that generates a high level of anxiety," Riemann says. That's not the same, for instance, as Johnny being wrapped up in video games because he enjoys them.

The most common obsessions are contamination, losing control, causing harm and excessive concerns related to perfectionism or religion, according to the International OCD Foundation.

Compulsions are repetitive behaviors used to escape obsessive thoughts. Washing and cleaning, checking, repeating activities and mental compulsions such as excessive praying or counting are common compulsions.

With OCD, Riemann says, people are so wrapped up in repetitive thoughts and behaviors that it interferes with their lives "either occupationally, academically, socially or in their relationships."

More than half of those with OCD develop it by age 18, he says. It escalates during adolescence and early adulthood, when it tends to plateau for most people. "Unfortunately, for about 15 percent, it continues to get worse throughout the life span."

Intensive Treatment

Exposure and ritual prevention, or ERP ­­-- a type of cognitive behavioral therapy -- is the treatment of choice for OCD.

"It's a very structured and systematic way of exposing people to their feared situations and situations that will produce the unwanted obsessional thoughts," Riemann says. "And then ritual prevention basically asks them not to perform their typical rituals -- not to wash, not to count, not to pray and so forth."

Some patients respond to medications as well, especially SSRI antidepressants such as Celexa, Lexapro and Paxil.

People with moderate OCD usually undergo ERP as outpatients. If conditions worsen, they may need intensive outpatient or day-treatment programs.

For really severe cases, residential treatment may be best, but access is extremely limited. Rogers Memorial offers the only child residential program in the nation, Riemann says, and is one of two centers offering adolescent and adult residential treatment. (McLean Hospital, near Boston, is the other.)

On average, Riemann says, patients stay in his program about 60 days -- with many people who arrive with severe symptoms making a dramatic improvement into the "mild" category by discharge. At home, they can continue with therapy.

Surgery: When Nothing Else Helps

Despite comprehensive treatment, OCD remains disabling for a minority of patients.

"In our residential program, we probably refer one person a month, roughly, to be evaluated for some sort of neural procedure," Riemann says. "These are people who came to us, tried the most intensive treatment there is to offer -- and still, for whatever reason, didn't get better."

By the time someone see Dr. Sameer Sheth, a neurosurgeon at Columbia University, they've exhausted all other options for treating their OCD.

To be considered for brain surgery at Columbia University Medical Center/NewYork-Presbyterian Hospital, Sheth says, patients must have repetitively failed to respond to an array of other treatments, often over many years. That includes intensive behavioral therapy and SSRI antidepressants, usually at least three trials. And they must have also failed an "augmentation trial" -- treatment with a different class of drugs. Screening includes a patient's physical health and the presence of other mental illnesses. Depression doesn't rule patients out, Sheth notes -- it's not uncommon in people with OCD.

"These are patients who are severely disabled," Sheth says. "The OCD is so severe, they're unable to function. They're unable to get out of the house; they're unable to have a job or relationships."

Surgical Choices

These procedures have been used for patients with extreme, treatment-resistant OCD:

Cingulotomy is a procedure in which surgeons create tiny damaged areas, or "lesions," deep in the anterior cingulate cortex of the brain, one of the areas involved with OCD symptoms. That small area of brain tissue, part of the "circuit" believed to be overactive in OCD, is destroyed. Sheth's group performs cingulotomy using a recently developed laser procedure in which a heated laser tip creates precisely shaped and placed brain lesions in conjunction with real-time MRI images.

Gamma capsulotomy uses a device called a Gamma Knife to deliver precisely focused radiation beams to the anterior internal capsule, another brain region involved in OCD. These radiation beams create permanent lesions in the targeted tissue. While the procedure doesn't involve surgical incisions, it also creates irreversible changes in the brain, similar to cingulotomy.

Deep brain stimulation is a surgical procedure in which neurosurgeons implant thin electrodes into the brain's anterior internal capsule. The electrodes attach to a "pacemaker" implanted under the skin of the chest. This stimulator is programmed to send electrical pulses to the targeted brain region. The programing can be adjusted as needed over time (at a medical center) using a remote control device. Because there is no permanent brain lesion, DBS is adjustable and reversible, but the device requires periodic maintenance and programming adjustments.

The neurology team thoroughly discusses risks, benefits and outcomes of each procedure with patients, including potential side effects and complications. Sheth says patients should look for a center that offers experience in more than one procedure. The choice of procedure is personal, he says. "It's a discussion on an individual basis -- which one is right for that patient."

Not "Cured," But Much Better

Radano became one of the earliest patients to undergo the Gamma Knife procedure at Butler Providence Hospital in Rhode Island. Improvement after brain surgery for OCD can take months. "I call it climbing Mount Everest one inch a day,'" Radano says. "You feel a tiny bit less anxious, a tiny bit better." Compulsion and obsessions fade incrementally. "Instead of washing your hands 200 times a day, now you're only washing them 198 times a day," she says. "It's that small of a process."

Responding to brain surgery doesn't mean OCD goes away forever. Rather, most patients become well enough to respond to standard therapies. Radano says surgery gave her the ability to participate in behavioral treatment, while her desire to "get off the couch" and keep her family intact provided the motivation. She's since returned to college, earned her social work degree and taken on a new role as a biofeedback clinician.

Radano has a website that draws people struggling with OCD from all over the world. She believes procedures like radiosurgery should be far more widely available to people "living in quiet desperation" with severe OCD.

Lisa Esposito is a Patient Advice reporter at U.S. News. You can follow her on Twitter, connect with her on LinkedIn or email her at lesposito@usnews.com.