For Obsessive-Compulsive Disorder patients who have exhausted all other treatment options, surgery offers great potential and poses great risk. For doctors shepherding along the precarious surgical procedures, successfully balancing the possible risks and rewards for patients will likely determine the future course of the work.
Surgery has allowed some OCD sufferers to live a more normal life – to attend college, to travel, to rebuild relationships with family and friends. Yet for others, the side effects can be severe: memory deficits, edema, even seizure disorder. (In many cases, the side effects disappear in time).
“We go out of our way to make sure [patients] are aware of the risks,” says Darin Dougherty, M.D., director of the Division of Neurotherapeutics at Massachusetts General Hospital (MGH), where cingulotomies, which involve very precisely lesioning brain areas involved in OCD circuitry, have been done since 1965. “We invest a lot of time upfront.”
Most candidates, who have, in effect, lost years of their lives to the disorder, are willing to accept the risk – and in some cases, seem willing to take on even more risk, Dougherty says. “Many have been suffering for so long. They feel so desperate…which is another reason we’re careful.”
Doctors still don’t know exactly what goes wrong in OCD, but have homed in on what’s known as the corticostriatal circuitry, involving brain structures including the orbitofrontal cortex, caudate nucleus, pallidum, and thalamus. Most surgical procedures for OCD involve the careful lesioning of different areas of this circuitry in an effort to disrupt it.
A prospective study published in 2002 of 44 OCD patients who had one or more cingulotomies at MGH found around a third improved greatly following the surgery and an additional 14 percent showed some improvement. Butler Hospital in Providence, R.I., which offers deep brain stimulation and gamma knife surgery (which focuses thin beams on the OCD circuitry), reports that around 60 percent of patients are significantly improved after the latter procedure.
The screening process for OCD surgery is understandably rigorous. For surgery at either hospital, patients must have tried medication and behavioral therapy for specified lengths of time. Their functioning must be significantly impaired.
“They have to be pretty much non-functioning,” says Richard Marsland, R.N., who oversees screening at Butler Hospital. He recalls an early patient about whom others had advised to put in an institution and “forget about him.”
Candidates for the OCD procedures come from all over the world. At Butler, where roughly 50-100 people inquire about surgery for OCD each year, many, even people who are desperate, are turned away. At MGH, around a dozen people will call in a year and around half are operated on, Dougherty says. After patients’ records are reviewed and the patients deemed suitable candidates for surgery, they are interviewed and examined face-to-face by one or two psychiatrists, a psychologist, a neurosurgeon and a neurologist.
Given the strict criteria for surgery, some researchers fear that less-experienced surgeons will attempt the procedures on desperate patients who may have been turned away. Although this is not a widespread problem, it has happened, Dougherty says and does present risk to a field in which progress depends on stringent screening, highly skilled doctors and careful follow-up.
Staff at MGH and Butler follow up on patients in the months and years after the surgeries, and stress that surgery is not a substitute for psychiatric care. Even for patients who have benefited from a procedure, cognitive behavioral therapy is crucial, Marsland says. Because patients likely acquired OCD at an early age, they missed out on at least part of their normal development process.
Adds Nicole McLaughlin, Ph.D., a clinical neuropsychologist and research psychologist at Butler: “We’re looking at whether there’s an improvement in ability, after surgery, to get more out of therapy. Sometimes before the surgery, people can’t engage in therapy because it’s too overwhelming.”
McLaughlin says Butler staff members hope to start a worldwide database to compare OCD surgeries. “We hope to be able to compare the results of the procedures and see if a patient would prefer a certain surgery over others.”