UNDAUNTED BY MISTAKES OF THE PAST, A NEW GENERATION OF BRAIN SURGEONS IS READY TO STEP IN WHEN PILLS AND THERAPY FAIL

April 24, 2005|By Adrian Brune. Adrian Brune's work has appeared in The New York Times, The Nation and the Village Voice.

THE TRIP FROM HER MODEST HOME in Huntingdon, Tenn., to Nashville is more than 100 miles, but Motty Beckham knows the stretch of Interstate 40 by heart.

In the 31 years since she rushed her infant daughter, Stephanie Funderburk, to the Carroll County General Hospital with a brain- ravaging case of encephalitis, it’s the road that has taken her to psychiatrists, psychologists and other therapists who tried to restore Stephanie to some level of normal function.

On this particular morning in June 2000, with Stephanie in the passenger’s seat of her minivan, Beckham was making yet another hopeful pilgrimage in search of a solution to her daughter’s violent behavior and other symptoms of obsessive-compulsive disorder.

“Sometimes it got so bad in the car, I would have to pull over until she calmed down,” Beckham says. “One time we came back from the doctor, and as soon as we walked in the front door she started beating her head. It took me 20 minutes to get her under control; I needed 10 arms instead of two.”

The place that held out hope for an end to Stephanie’s suffering was the operating room of Dr. Peter Konrad, a researcher and neurosurgeon at the Vanderbilt Medical Center in Nashville. Konrad would perform an amygdalotomy, one of the brain-altering procedures commonly known as psychosurgery–operations that target mental illness.

Once reviled as an unproven treatment performed by reckless physicians with often disastrous results, psychosurgery–formally called psychiatric neurosurgery–has lately been getting more respect from the medical community, at least as a subject for serious study.

In the past few years, surgeons at Loyola University Medical Center in Maywood, Harvard University’s Massachusetts General Hospital, Brown University’s Butler Hospital, the UCLA Medical Center and the Cleveland Clinic have been recommending brain surgery as a last-ditch option for patients whose conditions haven’t responded to other treatments. Besides obsessive-compulsive disorder (OCD), they include severe cases of depression, chronic pain and a group of ailments associated with OCD, including severe Tourette’s syndrome.

Recent research results have been encouraging enough for the National Institute of Mental Health to fund psychosurgery studies at Massachusetts General and the University of Florida.

In the Chicago area, Dr. Douglas Anderson, an associate professor of neurosurgery at Loyola, was one of the first to publish results of a procedure called deep-brain stimulation on a patient with obsessive-compulsive disorder. DBS, which involves implanting tiny electrodes in the brain, has been gaining favor among surgeons because it is reversible-the electrodes can be removed if the patient doesn’t improve. Other methods that involve incisions, and a radiation treatment called Gamma Knife, leave permanent lesions.

Yet even though well-respected physicians are warming to the idea of psychosurgery, many doctors and mental health advocates remain implacably opposed. They believe that virtually anything, including committing patients to mental institutions, is preferable to operations they believe do more harm than good.

“In my eyes, there’s never any excuse to mutilate the brain to control someone’s emotions or behavior,” says Dr. Peter Breggin, a Harvard-educated psychiatrist who has spent his career trying to end the practice of psychosurgery, or at least curtail it.

Dangerous or not, Motty Beckham felt she had no alternative. Her daughter had taken 30 different types of medication- anticonvulsants, antipsychotics, Prozac-type antidepressants and tranquilizers-to no avail. Each drug or combination of drugs would work for awhile-even enabling Stephanie, who cannot speak, to attend special education classes for a few years-and then they would stop working. Her rituals of order and symmetry would return: Lights had to be off, knickknacks perfectly arranged and all doors and cabinets shut. She would cry frequently, dig her fingernails into her arms and legs as well as those of others around her, and beat her head constantly.

Despite the risks, Beckham consented to the operation in the belief that it offered the best chance for lasting improvement in her daughter.

“Motty is tenacious like a pit bull when it comes to the care of Stephanie,” says Konrad, who is director of Vanderbilt’s Functional Neurosurgery Center and a specialist in using deep-brain stimulation to treat movement disorders such as Parkinson’s disease. Although his experience with DBS did not include treating psychiatric disorders, he felt obliged to help Beckham, who was on public assistance and couldn’t afford to travel with Stephanie to Boston or other cities where psychosurgery was more readily available.

“It was a case in which we had a young girl who was having behavioral outbursts that were dangerous to herself and her mother. But Motty didn’t want to be one of the parents who ignores their child by hiding them under sedative drugs and stuffing them in a nursing home somewhere.”

Konrad consulted a number of physicians from around the country, including psychiatrists, psychologists and surgeons from Brown and Harvard. They agreed that Stephanie was a suitable candidate for the procedure he had recommended, and Konrad began preparing for the operation. “I really had to do my homework before I went ahead with it,” he says.

As Beckham nervously paced the waiting room at Vanderbilt, Konrad began the surgery by making an incision that exposed the brain and, using neuro-imaging and a sophisticated targeting device, he guided two probes into the amygdala, a small area of the brain associated with anger and fear. The probes sent a small current of electricity through the tissue for a few seconds, creating a lesion that blocked neural pathways linked to aggressive and self-abusive behavior.

Four days later, Beckham again drove onto I-40 and took her daughter home. She noticed changes immediately. Stephanie became less aggressive and, for a while, less agitated. But, as with the medication, her obsessive-compulsive behavior gradually returned. Within a year, Beckham was driving Stephanie back to Vanderbilt for another surgery.

This time Konrad performed an anterior capsulotomy, which he says disconnects some of the higher “thought functions” that carry out complex behavior, such as obsessively picking up and organizing a pile of shoelaces-”or [counting] toothpicks in the case of the ‘Rain Man.’ ” In Stephanie’s case it was done to alleviate her compulsion to pick at objects, clothing and her repetitive movements. “It didn’t help with that very much,” Konrad acknowledges, “and most likely we still don’t really understand what drives these behaviors in Stephanie because she is mute.”

The capsulotomy was followed the next year by a cingulotomy, which augmented the first operation by targeting another part of the brain that affects OCD and hyperactivity.

Despite the operations, some of Stephanie’s unruly behavior has persisted, demonstrating the limits of psychosurgery in certain cases. But Beckham isn’t unhappy with the results.

“Things are so much better,” she says. “Steffie’s had five violent spells in four years, when before she was having four a week. She now has times when she laughs while she’s sitting out in the swing when I’m mowing the yard. We can go to town with a neighbor or relative or go out to dinner at McDonald’s, and she can actually sit and eat. I wouldn’t go back and undo any of it.”

Psychosurgery has been practiced in one form or another for decades. With varying success, surgeons have tried to alleviate psychiatric disorders by severing connections between the brain’s frontal lobes, where thought processes unfold, and the limbic system, which regulates emotions. The procedure has been likened to cutting telephone wires to reduce the number of messages transmitted. Early attempts to perform these operations were often badly conceived and clumsily performed.

But the risks of psychosurgery have declined in recent years due to enhanced radiological imaging, better surgical techniques and rapidly expanding knowledge of the brain’s structure and functions, says Dr. Benjamin Greenberg, a psychiatrist and researcher at Butler Hospital and Brown Medical School.

Greenberg has worked with another psychiatrist, Dr. Steven Rasmussen, who began performing capsulotomies with a device called Gamma Knife, which directs beams of low-level radiation to treatment sites without opening the skull.

An estimated 40 psychosurgeries are performed each year, either as clinical interventions in cases like Stephanie’s or as part of controlled research studies. Some operations, however, may go unreported.

Among the recent studies with positive results was a deep-brain stimulation performed in 2001 by Loyola’s Anderson. The patient was a 35-year-old woman whose drug and psychiatric treatments had failed to relieve her severe obsessive-compulsive symptoms, which included checking her mail 20 times a day and having suicidal thoughts.

He implanted electrodes designed to block harmful brain activity by emitting low levels of electricity. In an article in the Journal of Neurosurgery, he reported that within 10 months the woman’s condition had improved to the point that she was able to return to work and lead a normal life.

Since then, Anderson says, he has successfully treated three more OCD patients, including a young man who recently graduated from college after being unable to complete a semester before the surgery.

Results of other surgeries over the past decade have been mixed. A 1996 Harvard study reported that less than half of the OCD patients-14 of 34 men and women-improved substantially after undergoing cingulotomies. Six years later, the same group reported better outcomes in an article published by the American Journal of Psychiatry. This time, nearly 50 percent of patients could manage their symptoms well enough to resume normal lives.

Another study, at Britain’s Institute of Neurology in 2002, followed two male patients with OCD before and after surgery-an 18- year-old and a 64-year-old who had suffered severe symptoms for 47 years. After the procedure, the young man returned to high school full-time and graduated, finally able to read and comprehend without obsessing about the meaning of words. The older patient, formerly plagued with checking and counting rituals, could play with his grandchildren for the first time. Two years after surgery, he was judged to be essentially free of obsessions, compulsions and anxiety.

Only about 1 percent of obsessive-compulsive patients may be candidates for surgical treatment, Greenberg says, but such estimates are hard to verify. Even surgeons find that detailed knowledge about the scope and success rate of psychiatric surgeries is elusive. Dr. Fred Ovsiew, director of neuropsychiatry at the University of Chicago, and others note that there have not yet been enough scientifically rigorous, large-scale studies to test how well various procedures work and how much of patients’ improvement may be due to placebo effects.

The absence of a reliable database means that anecdotes and small case studies may be the only guides for psychiatrists and surgeons in their selection of patients and surgical methods. “The big questions are: Who do you do the surgery on, and where do you go in the brain to do it,” says Dr. Helen Mayberg, a psychiatry and neurology professor at Emory University School of Medicine in Atlanta.

Such knowledge is vital, she says, to ensure that the procedure is no more extensive than it needs to be. “If you come to a doctor with an infection in your arm and he cuts it off, the infection may be gone, but has he treated it at the level that is necessary?” says Mayberg, who recently published a study that showed positive effects of deep-brain stimulation in several patients with severe depression.

Psychiatric disorders that are not considered suitable for surgery include schizophrenia and other psychotic conditions. Nor should neurosurgeons alone choose the patients, says Ovsiew. “They should be selected by interdisciplinary teams led by psychiatrists largely on the basis of psychiatric considerations.” In all cases, he emphasizes, the procedures should not be done on anyone who hasn’t exhausted all other treatments.

Gerry Radano met those criteria. When the mother of two from Westchester, N.Y., finally convinced Greenberg and Rasmussen to let her come to Butler Hospital for an interview, she had spent 10 years submerged in the madness of obsessive-compulsive disorder.

Radano’s struggle began in childhood, when she noticed “quirky behavior” that continued through her 20s: checking switches repeatedly to ensure they were off, arranging things symmetrically. When she became pregnant with her second child at the same time her mother was dying of cancer, a mania unlike any she had experienced overcame her.

She was besieged with urges to constantly bathe to keep her body free of germs, a ritual that stripped off layers of skin. Each day she washed her hands 200 times, took three one-hour showers and changed her clothes eight times. Her pathologies kept her family imprisoned psychologically, financially and sometimes even physically. She refused to open the door to anyone, even her children’s playmates. If one article of clothing, including expensive overcoats and shoes, touched something that might be unclean, she immediately discarded it.

Before the onset of her extreme behavior, Radano says, she was a flight attendant for 23 years, started her own real estate business, got married and had a child. “Then all of a sudden I was completely whacked, crippled by OCD.”

She says movies about obsessive-compulsives-”As Good As It Gets” and “The Aviator,” which depicts Howard Hughes’ decline into mania- “don’t show how bad it can be. OCD is so incredibly crippling that you are in a state of torture 24 hours a day. The habitual thoughts cause you to constantly act on your compulsions just to get rid of them.”

Radano sought help, but not before her husband left her, taking the children. She checked into three different hospitals for a total of 20 weeks, she says, and tried about 10 different medications as well as several behavioral therapies. Nothing worked. During one hospitalization in 1997, a behavioral therapist gave Radano a name and phone number before giving up on her. It was for Butler Hospital.

The hospital’s arduous application process took nearly two years. Finally, in November 1999, Greenberg signed off on a gamma-knife capsulotomy, which his colleague, Rasmussen, performed. Radano was given a Valium and placed immobile on a table where surgical assistants screwed a head frame onto her skull. Rasmussen then used an MRI to target 201 beams of radiation on a tiny site in her brain, creating four small lesions. Each beam carries a small dose of radiation to avoid damaging surrounding tissue; they reach a treatment-level intensity when they converge at the problem area.

Eight months went by before Radano noticed a change. “[I began] to take my life back, go to places I didn’t go to [before] and start exercising,” she says. She lost weight and took up volunteer work. Her husband, wary at first, began coming around again with their children, and eventually they reconciled.

Radano says she is now in complete remission without medication. “A handyman came in the house and stood on my counter with his shoes on, and I didn’t even flinch,” she says. According to Greenberg’s office, she recently scored a zero out of 40 on the Yale-Brown Obsessive-Compulsive Scale, the universal standard for OCD diagnosis; she once was measured at 37. She will receive her bachelor’s degree in social work this spring.

Greenberg is careful to point out that not every patient recovers as dramatically as Radano has, and some people don’t get better at all. “This is by no means a can’t-miss treatment,” he says.

Stories like Radano’s have not placated psychosurgery’s large group of vociferous detractors. Chief among them is Breggin, a former psychiatrist with the National Institute of Mental Health and Johns Hopkins University. “Not one of these surgeries is any different from anything they were doing in the ’60s,” he says, referring to an era when discredited procedures were widespread. “The only thing new is the return of the chutzpah to perform them.”

He notes that the brain sites targeted by psychosurgery provide large fiber highways that help transmit electrochemical impulses through the brain and nervous system. When surgeons destroy these neural pathways, he says, the brain’s nerve cells can die, leading to retrograde degeneration, an umbrella term for dementia, emotional disability, loss of speech and diminished IQ.

Dr. Michael Jenike, a psychiatrist at Harvard’s Obsessive Compulsive Disorder Institute, counters that Breggin’s critique is out of date: “If you destroy the wrong regions in the brain, bad things happen, obviously. This happens in accidents daily.” But, he adds, “I would assume from such statements that Breggin knows absolutely nothing about psychosurgery, [which involves] precise surgical lesions.”

Some of Breggin’s claims are supported by researchers, however, including Dr. Susanne Bejerot, an expert on OCD at Sweden’s renowned Karolinska Institute. In an article in the European medical journal Acta Psychiatrica Scandinavica, she acknowledged that psychosurgery can successfully reduce the compulsions and anxieties of OCD. But she ticked off a laundry list of unexpected results: weight gain, memory problems, poor impulse control and the diminution of inhibition, which, in one case, led to sexual assault.

“Examples of side effects after capsulotomy . . . are one man who raped his wife in front of the children-but was defined as a responder because his OCD symptoms had abated-and another ‘successful case’ who stole a bus many years after surgery,” she wrote.

Psychosurgery is a hot-button issue in the medical community largely because of the horrors associated with lobotomies, which were performed by the thousands in the 1940s and ’50s.

Although a few psychosurgeries were attempted as early as 1891, the Portuguese neurologist Antonio Egas Moniz was the first to formally introduce lobotomy, in 1935. It was a rudimentary cut in the prefrontal lobe of the brain behind the forehead, and he used it primarily to alleviate the symptoms of patients diagnosed with schizophrenia.

Almost immediately, doctors in Brazil, Italy and the U.S. embraced the procedure for a number of other psychiatric ailments, believing that the benefits of these surgical lesions, despite their tendency to produce personality loss, far outweighed the symptoms of severe illnesses.

In America, George Washington University physician Walter Freeman and a colleague, neuropsychiatrist James Watts, developed a form of lobotomy that involved deeper and wider cuts. From 1943 to 1954, they performed 10,365 standard prefrontal lobotomies, according to researchers at Harvard Medical School. At one point, Freeman reported a 70 percent rate of improvement, which often meant patients were simply more subdued after the lobotomy.

“If you insist in chopping up someone’s brain, you’ll eventually destroy the brain. Of course that will result in reduced aggression,” says Breggin.

Freeman’s lobotomies also had a mortality rate of 6 percent- compared to zero with today’s psychosurgeries, according to Butler- and some patients had to be taught how to eat and use the bathroom again. One of Freeman’s and Watt’s notorious failures was the late Rosemary Kennedy, the mildly retarded member of the famous political family whose mental condition sharply declined after a lobotomy in 1943.

Lobotomies remained a popular treatment for violent aggression and other abnormal behavior throughout the post-World War II years- Moniz even won the Nobel Prize in 1949-and were performed on as many as 50,000 Americans.

With the invention of tranquilizers and other antipsychotic drugs in the ’60s-and growing doubts about Freeman’s methods and ethics- lobotomies fell out of favor, but surgeons continued to develop other brain-altering procedures.

By 1977, public alarm over experimental operations, influenced in part by the negative portrayal of psychosurgery in the book and film “One Flew Over the Cuckoo’s Nest,” led Congress to form an investigative commission. The panel recommended a permanent advisory board to oversee research, but it was rejected by the Carter administration and there was no follow-up to calls for voluntary regulation.

That left researchers without clear directives , though Greenberg believes they got a green light of sorts. “The commission called for systematic study under careful selection,” he says, “and now we think we have a chance to do that.”

Nonetheless, psychosurgery remains under deep suspicion in the medical community. “Because of the backlash over indiscriminate surgeries, most surgeons aren’t interested,” says Emory’s Mayberg. “But in selective institutions they’ve remained a treatment option, though on a very limited basis.”

Anderson, the Loyola surgeon, encountered some of that backlash when he presented a paper describing deep-brain stimulation for OCD. “We had people stand up and say, ‘We’ve been down this road before and it damaged [the practice of] surgery. What are you doing?’ ”

Anderson said he responded that he was “opening new paths” for treatment of people whose cases had been considered hopeless. “Every time we do this, someone sees the results and perhaps thinks of a different way it could be applied.”

Dr. Joseph J. Fins, head of the medical ethics division at Cornell University’s Weill Medical College, also believes surgeons should take a more tolerant attitude toward psychiatric surgery.

“We must be aware of the history of these types of surgeries, but we must remember it accurately-not the mythology that becomes the history,” he wrote in the journal of the Neurosurgery Clinics of North America. Modern psychosurgery, he said, is a legitimate science that shouldn’t be tainted by the “moral blindness” of its early practitioners.

While its supporters agree that psychosurgery should be strictly monitored by independent review panels and used only for intractable illnesses, the precautions aren’t always followed.

Mary Lou Zimmerman, a 58-year-old bookkeeper from Kansas, decided nearly seven years ago that she needed to do something radical about her continuous need to shower and wash her hands, OCD rituals that had been with her for 30 years. She had tried drugs and a few sessions of cognitive therapy, but she still couldn’t control her compulsions, according to her attorney, Robert Linton.

Zimmerman’s psychologist suggested she go to Cleveland Clinic, a respected medical center, for a surgery assessment. “The clinic seemed to advertise a relatively harmless procedure with a 70 percent success rate, but it didn’t have the same safeguards as Harvard,” Linton says. The clinic required that only two outside psychiatrists approve Zimmerman as a candidate, even though Linton says neither had any experience with psychosurgery.

Instead of performing one operation and then waiting for the results, Zimmerman’s doctor attempted to eliminate all of her symptoms with an experimental surgery that combined both a cingulotomy and a capsulotomy. It required drilling four holes in her skull and creating lesions in four areas.

Two days later, according to Linton, Zimmerman fell gravely ill with an infection and suffered severe brain damage. She came out of the procedure cured of her compulsions but was unable to speak or care for herself.

Zimmerman’s husband, who had to quit his job to provide his wife with around-the-clock care sued the clinic. Doctors from Harvard’s Obsessive Compulsive Disorder Institute testified in support of the clinic and the surgeon, Dr. Gene Barnett. They said both surgeries had been proven on patients like Zimmerman for decades.

Attorneys for the Zimmermans called in Breggin and a former head of neurology at the clinic. They said the double surgery was experimental and should not have been portrayed as a routine procedure. The clinic did not properly inform the patient and her family of the surgeries’ risks and therefore were negligent, he said.

The jury sided with the Zimmermans and awarded them $7.5 million in damages. The Cleveland Clinic has since curtailed its psychosurgery program and tightened its selection process for surgery patients.

“One of the issues you have to deal with is whether or not the risks and benefits are being explained to the patient,” Linton says. “You need more than routine consent; these are psychiatrically impaired, vulnerable patients looking for a magic cure. They need to go before some internal review board to make sure they are proper candidates.”

Greenberg’s screening process for psychosurgery candidates at Brown takes months and involves interviews with a dozen clinicians as well as an extensive investigation. “Even after we admit them, sometimes we’ll find that another previously untried method of treatment works instead of the surgery,” he says.

While most surgeons accept these strict protocols and ethical guidelines, they are voluntary and there is nothing to stop others from proceeding without them.

“There is no FDA for surgery,” observes the University of Chicago’s Ovsiew. “Any cowboy neurosurgeon could do one of these if he wanted to on a patient who demanded it. There’s no way to know where it might be done.”

Adds Linton: “Surgeons can now use computers to pinpoint precise areas of the brain to treat, but they still don’t understand what causes OCD or where exactly it originates in the brain. The patient should know that they may simply be playing a game of Russian roulette and that a misfire could be catastrophic.”

Faced with the risks of cingulotomies and other lesion-producing surgeries, some surgeons are turning to deep-brain stimulation. Unlike other procedures, DBS can be reversed; patients who don’t improve can be restored to their preoperative conditions.

During the operation, an electrode is inserted through a small opening in the skull and implanted in the targeted brain area. To connect the electrode to a power source, an insulated wire is passed under the skin to a battery pack near the collarbone, like a pacemaker, Greenberg says. Once the system is in place, an adjustable current of electricity is sent through the electrodes to counter brain signals that may trigger OCD behavior.

Greenberg believes DBS is not ready for widespread use, noting that it has been tried in only about 30 psychiatric cases worldwide.

But back in Tennessee, word of the DBS studies has reached the ever-hopeful Beckham.

On a recent trip to Konrad’s office at Vanderbilt, she inquired about it but learned that Stephanie’s inability to speak would disqualify her. Instead, Konrad suggested another cingulotomy that might reach the brain circuits he had missed.

However, he says he doesn’t want to proceed without closer scrutiny of Stephanie’s case. “The last thing I want to do is poke and prod Stephanie through procedures we don’t know very well,” he says. “At least we made her less destructive to herself.

“Most neurosurgeons probably wouldn’t touch her case with a 10- foot pole,” he adds, “but the scenario is a desperate one, and you can certainly sympathize with her mother.”

Konrad believes the reluctance of surgeons to treat patients like Stephanie often stems from a lack of information and misconceptions about psychosurgery.

“After the end of the lobotomy era, doctors did surgery for this sort of thing [OCD], and you never heard about them because they were successful,” he says. “People in America really started having problems with them after ‘One Flew Over the Cuckoo’s Nest,’ but that was about a surgery in which large portions of the brain were knocked out.”

Another factor inhibiting the use of deep-brain stimulation is the high cost of insurance-for both patients and doctors. Neurosurgeons pay the highest malpractice premiums in the country, Konrad says, and many of them have abandoned brain surgery and limit their practice to spinal surgery. “Most neurosurgeons would not dream of doing psychosurgery unless there is major tort reform in the way malpractice is handled.”

As for patients, insurance companies normally don’t cover deep- brain stimulation for psychiatric problems, although they will pay for the procedure in patients with Parkinson’s disease and certain other ailments.

Earlier this year, the Food and Drug Administration approved DBS as a “compassionate use” for OCD, but that doesn’t mean insurance companies will cover it, Konrad says.”They don’t see deep-brain stimulation as a proven method for solving the problem. I don’t want to stick patients with $60,000 implants when their insurance won’t pay for it.”

Stephanie’s surgeries, he says, were more in line with the kind of “lesioning” procedures that medical insurance will cover.

Meanwhile, Beckham, whose medical bills are covered by Medicaid, is considering going ahead with the fourth surgery on her daughter, who still has spells. She believes she has done the right thing by allowing the previous operations.

“Surgeons want informed consent when possible, but I made the decision for Stephanie because she can’t talk and has some cognitive impairment, and because I knew if she continued with her behavior, she could cause damage to herself or someone else.

“I know in my heart that is what she would have wanted me to do.”