To break the maddening cycle of their own thoughts, some psychiatric patients have had wires surgically implanted inside their brains. Others have surgeons burn tiny holes in the middle of their brains, for the same purpose. The procedures are a last resort, an attempt to fix stubborn mental problems by operating directly on the neural circuitry itself. And now, a small cadre of doctors is starting to spread the word: Brain surgery, for some severe mood and anxiety disorders, is a viable treatment.
In the decades since frontal lobotomy -- a crude cut into the frontal lobe, behind the forehead -- was discredited as an ethically indefensible operation, neurosurgeons say they have developed far more precise techniques to operate on the brain, and a better understanding of how the organ functions. At several institutions around the world, including hospitals affiliated with Harvard and Brown universities’ medical schools, surgeons have been operating on dozens of patients each year with severe psychiatric problems, including depression and, more commonly, obsessive-compulsive disorder, or OCD. The results have been encouraging enough that the federal government this year funded two brain-surgery research studies for OCD patients, and other major medical centers, including UCLA, are interested in establishing a program.
“There are some people who don’t respond to other treatments at all,” said Dr. Wayne Goodman, a psychiatrist at the University of Florida in Gainesville, who is directing one of the research studies for OCD. “And for the first time, they have some hope.”
But with hope comes risk. Researchers still do not fully understand how the operations affect the brain, or why. There is not yet a consensus on which surgical procedures produce the best results. And doctors do not know for sure whether surgery by itself relieves symptoms or produces a strong placebo effect -- a self-fulfilling belief that the disease has been successfully treated.
Caution and consent
Some experts who follow the emerging field are concerned that demand for these operations could tempt less-experienced surgeons to try them, without the safeguards or oversight of a research university. Given the history of this field, known as psychosurgery, there’s little margin for error. At least one operation has gone badly already, causing permanent brain damage.
“At this point,” said Dr. Joseph Fins, director of the medical ethics division at Cornell University’s Weill Medical College in New York, “we have to be absolutely sure that desperation in and of itself does not lead patients to consent to procedures that are still investigational.”
In the early years of psychosurgery, after World War II, there was broad support in the United States for the frontal lobotomy. By making a slash into the frontal lobe, which is involved in impulse control and mood regulation, doctors hoped literally to cut away violent, agonizing thoughts and behaviors. The procedure often had just that effect, which for many deeply troubled people and their families was a great relief. The scientific community was so impressed that in 1949, the man who developed the procedure, Portuguese neurologist Dr. Egas Moniz, won the Nobel Prize in medicine for his work in psychosurgery.
In the years that followed, lobotomies were performed on about 50,000 people in the U.S., prompting heated debates about mind control, social engineering and the ethics of surgical psychiatry. The more practical problem was that doctors had almost no idea what they were doing. The effect of the operation was unpredictable: Lobotomized patients were less aggressive all right, but many were reduced to listless shadows of their former selves. One of the most enduring public images of psychosurgery is of McMurphy, the rebellious mental patient played by Jack Nicholson in the 1975 movie “One Flew Over the Cuckoo’s Nest.” Subdued in the end by brain surgery, he turned dull-eyed and absent.
That was then. Now, experts say, surgeons at research institutions have stringent ethical standards limiting surgery only to patients who have failed all other treatments, and who fully understand the risks. And physicians have much more experience with similar surgeries for other conditions, such as Parkinson’s disease, and with brain imaging technology to pinpoint surgical targets. Brain imaging research also has linked mental disorders such as OCD and schizophrenia with abnormal function in specific regions of the brain. In OCD, for example, a circuit linking portions of the orbital frontal cortex, which is behind the eyes, to deeper structures, such as the thalamus, appears to be more active than normal. Surgeries for OCD are meant to interrupt this circuit. They include:
* Capsulotomy. Surgeons insert probes through the top of the skull and down into the internal capsule, a region near the thalamus and part of the circuit connecting to the cortex. They then heat the tips of the probes, burning away raisin-sized portions of tissue. The operation can also be done with external radiation, by shooting beams into the capsule, where they converge to burn away tissue.
* Cingulotomy. In this operation, surgeons thread probes through the top of the head down into the cingulum, a bundle of connective tissue near the capsule that appears to regulate the circuit that’s hyperactive in OCD patients. They then burn away tissue by heating the probes’ tips. The procedure can be done with external radiation.
* Deep brain stimulation. In this operation, surgeons thread wires through the skull and into the capsule. No tissue is destroyed. The wires, which remain embedded in the brain, are connected to a battery pack implanted in the chest. The batteries produce an adjustable, high-frequency current that interrupts the circuitry implicated in OCD. Doctors have been using the procedure for years to settle the tremors of Parkinson’s disease. It’s reversible -- if the stimulation doesn’t work or causes problems, the current can be turned off.
Early studies encouraging
Over the past decade and a half, several pioneering doctors have quietly built a track record for capsulotomy and cingulotomy. In one 1996 study, published in the journal Neurosurgery, doctors at Massachusetts General Hospital, a Harvard-affiliated institution, followed 34 men and women who had cingulotomies for OCD or other major mood disorders. The doctors found that 13 (or 38%) of the patients improved substantially in the months and years after surgery. In a 2002 study in the American Journal of Psychiatry, the same team reported that 20 of 44 OCD patients (45%) who had cingulotomies improved significantly -- meaning that they could manage their symptoms well enough to make a significant change in their lives, such as resuming work.
At Butler Hospital in Providence, R.I., which is affiliated with Brown University, doctors report similar response rates for capsulotomies using radiation.
Some patients who were almost completely disabled by OCD before surgery are now leading fuller, more normal lives, said Dr. Benjamin Greenberg, chief of outpatient services at Butler and an associate professor of psychiatry at Brown. One formerly severely ill man has gone on to graduate school. Greenberg is now working with doctors at the Cleveland Clinic , the University of Florida and Massachusetts General to test the effectiveness of deep brain stimulation for both OCD and depression.
Several doctors involved in these programs were either hesitant to discuss the issue or asked not to be quoted by name. Some explained that they are wary because the shadow of lobotomy still haunts public perceptions of the field, despite all the advances. “There is history to deal with, and it’s not a good history,” Greenberg said. “We don’t like to call it psychosurgery anymore, so much has changed. It’s neurosurgery for severe psychiatric illness.”
Patients’ interest growing
Word of the advances is reaching patients. Last month, Greenberg discussed the Butler program at the annual meeting of the OCD Foundation, a group that includes doctors, researchers and patients. “There’s a whole lot of interest in surgery now among patients,” said Patty Perkins, the foundation’s director. “I think there are many who at least would consider it.”
Ann M. Lenkewicz was one of them. Lenkewicz, 47, a nurse living in Providence, considered having brain surgery several years ago to treat her OCD. Her compulsions were religious: She believed she had to repeat a variety of prayers, painstakingly and exhaustively throughout the day, to avoid an unnamed disaster. “It plagued every part of my life for almost 30 years: my job, my family, my relationships,” she said. She was spared the decision on surgery after finding an antipsychotic drug that, in combination with psychotherapy, kept her anxieties in check. “It was a big relief; brain surgery is a very serious thing.”
The family of Mary Lou Zimmerman would agree. In 1998, Zimmerman, a former bookkeeper who was then 58, visited the Cleveland Clinic to have surgery to relieve severe OCD. Zimmerman suffered from one of the most common compulsions, a fear of contamination. She spent hours every day showering and washing her hands, and neither drugs nor counseling could break the cycle.
A surgeon at the Cleveland Clinic performed two procedures in combination -- a cingulotomy and a capsulotomy -- burning four holes in her brain. More typically, surgeons perform one procedure, making two holes. It was soon clear that the patient had suffered crippling brain damage, either from the surgery, from an infection or from both, said the woman’s attorney, Robert Linton, of the Cleveland law firm Linton & Hirshman. In June 2002, a jury in Ohio awarded Zimmerman and her husband, Sherman, $7.5 million in damages. “She is completely disabled and needs full-time care,” said Linton. “This is an example of what can happen when an experimental procedure goes awry. There are real risks.”
In a statement released immediately after the verdict, the Cleveland Clinic said it “was outraged” by the decision. “This case exemplifies the need to make the distinction between a complication leading to a bad outcome and negligent care.... Our physician provided an excellent standard of care,” the statement said. A spokesperson contacted last week would say only, “the Cleveland Clinic appealed the jury verdict, and all disputed issues concerning the matter have been resolved.”
Doctors say that any open brain surgery has a complication rate, a 1% to 3% risk of hemorrhage, seizure, infection or other problems. In the medical literature there are also scattered reports of “apathy” or “indifference” in patients after psychosurgery; the incidence is estimated to be less than 1%, according to a recent review of all reported procedures through 2001.
Psychiatrists, however, said these risks must be weighed against the 30% to 50% positive response rate from surgery, and the devastating consequences of severe, intractable OCD and other mood disorders, which can cause a lifetime of misery.
Some patients have turned to private clinics for the surgery. At San Diego Gamma Knife Center, a radiation surgery center affiliated with Scripps Memorial Hospital in La Jolla, doctors have done eight procedures for OCD, said Dr. Kenneth Ott, the clinic’s medical director, and at least one of the patients has improved significantly. Ott said the clinic consults with patients’ psychiatrists to make sure they are good candidates for surgery and have exhausted all other treatments. Moreover, radiation surgery does not have the same infection risk as open surgery -- the beams are external, like an X-ray.
The fate of those who do not improve with surgery is less clear. Some have a repeat procedure, each with its small risk of complications and the possibility that it too won’t remedy the problem. Yet in modern neurosurgery these risks are taken with the patients’ consent. As awful as they are, severe cases of OCD and depression rarely rob people of their intellectual capacity to make an informed, reasoned decision. And it is the desires and suffering of these people, more than anything else, that will fuel continued study of psychosurgery.
“Our society uses words like ‘malignant’ to describe cancer, but severe mental illness is the most malignant disease you can have,” said Fins, of Cornell’s medical school. “These are horrifying illnesses and, as doctors, we have an obligation not only to protect patients but to investigate procedures that might benefit them.”