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Addiction treatment had failed. Could brain surgery save him? - The Washington Post

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MORGANTOWN, W.Va. — After nearly two decades of hardcore drug addiction — after overdoses and rehabs and relapses, homelessness and dead friends and ruined lives — Gerod Buckhalter had one choice left, and he knew it.

He could go on the same way and die young in someone’s home or a parking lot, another casualty in a drug epidemic that has claimed nearly 850,000 people like him.

Or he could let a surgeon cut two nickel-size holes in his skull and plunge metal-tipped electrodes into his brain.

More than 600 days after he underwent the experimental surgery, Buckhalter has not touched drugs again — an outcome so outlandishly successful that neither he nor his doctors dared hope it could happen. He is the only person in the United States to ever have substance use disorder relieved by deep brain stimulation. The procedure has reversed Parkinson’s disease, epilepsy and a few other intractable conditions, but had never been attempted for drug addiction here.

The device, known as a deep brain stimulator, also is recording the electrical activity in Buckhalter’s brain — another innovation that researchers hope will help locate a biomarker for addiction and allow earlier intervention with other people.

Buckhalter, 35, is a walking, talking laboratory for the outer edge of drug addiction therapy, a living experiment in what may be possible someday.

Yet for all the futuristic prospects, he is also proof of how difficult treatment of addiction remains. Quelling it with a scalpel helps refute the false belief that substance use disorder is a weakness or a moral failing, rather than a brain disease. But it does not address the psychological, social and socioeconomic factors that complicate the disease.

Buckhalter still requires anti-drug medication, counseling and Narcotics Anonymous meetings. He still experiences cravings, depression and the anxiety that drove his drug use. He is only now beginning to rebuild the promising life that drugs crushed when he was barely old enough to drive.

A second patient in the same experiment soon stopped participating and had the brain device removed.

“This is not a magical cure,” said Ali Rezai, director of the Rockefeller Neuroscience Institute at West Virginia University, who performed Buckhalter’s surgery. “This is a treatment that allows you to dial down the anxiety, improve the mood, make people more in charge of their bodies, make them less fragile and susceptible.

“So [you] make them more in control and then you allow other treatments to take effect.”

‘I think the disease was there’

Looking back on his middle-class childhood in Dilliner, Pa., a small cluster of homes a dozen miles north of the Rockefeller institute, Buckhalter finds few clues to the life he would soon be living. He wanted for little. His father had a good job with a mining company. His mother is an administrative assistant at West Virginia University. He has a brother and a sister. He did not experience childhood trauma often linked to later drug use, although his mother said he was at times unusually anxious.

“If a shoe had to be ordered, for instance, I couldn’t wait,” he recalled. “I had to have it right now, that instant gratification. I had to have it and if I didn’t, there was problems. I didn’t notice it so much then as I do now. I think the disease was there.”

It was the same obsessiveness he brought to sports, where he drove himself to be the best — and always was. At tiny Maplewood High, Buckhalter starred in baseball and basketball, but truly stood out in football. Elite Division I programs such as Penn State and the University of Iowa scouted the gifted wide receiver, offering the chance at a full scholarship.

“He was 110 percent ‘go’ no matter what he was doing,” said George Messich, who has coached the Maplewood team for 41 years and considers Buckhalter one of the best receivers in school history. “If you were in the clutch and you threw the ball up, he was coming down with it.”

Buckhalter’s grades were fine. He was popular. And yet, something was off. Inside, he felt powerful anxiety, discomfort in his own skin. With school, teachers, girls, it was always awkward. “I just felt like I struggled,” he said.

In 2002, the winter of his sophomore year, Buckhalter dislocated his shoulder in a basketball practice. Surgery followed that summer. The doctor sent him home with a bottle of Percocet, a painkiller that combines oxycodone and acetaminophen.

“The moment that I took that first Percocet, it did something to my brain,” he said. “If I could design myself, and feel how I wanted to feel, that was it. Immediately, I was like okay with myself. I was at peace on the inside.”

It is a story doctors and drug counselors have heard countless times since the opioid epidemic began just before the turn of the century. For most people, oxycodone relieves pain without life-altering euphoria. An unlucky few find themselves instantly in its grip.

“The clouds lift and the sun comes out,” said James Berry, an addiction psychiatrist at West Virginia University and a member of Buckhalter’s treatment team.

At the time, doctors knew little about the opioid disaster they were unleashing, which has since claimed half a million lives. Medical authorities and drug companies were both applying pressure to treat pain aggressively. It took several months for Buckhalter’s prescription to run out, but when it did, he discovered how easily he could obtain more pills.

“At that time, everybody’s parents or grandparents had pain pills,” he said. “And so we would just steal them. Always, somebody had an Aunt Peggy that was on Vicodin, a whole big old bottle of 160 of them, 180 of them.”

He introduced his buddies to oxycodone. Some of his closest friends became addicted. “To this day, we all still struggle,” he recalled. “It did the same thing to them as it did to me.”

He practiced high. He played loaded. His coach could see that something was wrong, but it was difficult to figure out. Buckhalter was still the star of the team. His parents believed he suffered from depression. A grandparent had been diagnosed with bipolar disorder.

Soon, he was completely in the painkillers’ grasp. By senior year, his grades plummeted. He was frequently in trouble, at school and at home. He couldn’t qualify for a Division I school academically, and his scholarship prospects evaporated.

“Throughout high school, our No. 1 priority was making sure we had pain pills every day,” he said. “When I woke up, the only thing I thought about was how I was going to obtain some pain pills.”

When the money for drugs ran out, he stole — from friends and strangers, but mostly from his family. He pawned a gun that his grandfather had given his father. Over the years, Buckhalter estimates, he stole tens of thousands of dollars that he spent on drugs. No one pressed charges. His mother began bringing her pocketbook into the bedroom at night, and his father installed a heavy-duty lock on the door to the room.

Eventually, “I would steal off anybody. Anybody and everybody,” he said.

“If I was at your house, if you went to the bathroom, I was in your cabinets. Or I was in your purse. One or the other.”

With college out of the question, Buckhalter went to work, first for a drilling company, then for his father’s mining company when he lost the first job. It was hard work, but he was earning serious money. Eighty-milligram oxycodone pills were available at the time. At $80 apiece, it took two or three of those to get through the day.

He began to burn through his money before each payday. He turned to snorting heroin, which delivered the same high at a quarter of the cost. He added MDMA and Adderall to the mix, along with the alcohol and marijuana he had been using. Eventually, he became mostly addicted to Xanax, the benzodiazepine that best suppressed his anxiety. He overdosed several times, once plowing through a fence in his car, another time becoming unresponsive in an airport.

Buckhalter tried every treatment available: inpatient, outpatient and residential programs; opioid treatment drugs like suboxone and buprenorphine; counseling; Narcotics Anonymous and Alcoholics Anonymous meetings. Sometimes, he was sober for days; other times, he went for months. But the end result was always the same.

His family tried to support him, but his parents eventually kicked him out. Buckhalter never slept on the street, but he spent many nights on couches. His parents stayed in his life as much as they could, hoping they could help but living in fear.

“He was either going to go to jail or die. And I’d already accepted it. I had come to terms with it,” said his father, Rex. “I just prayed to God that he didn’t hurt somebody else.”

By his late 20s and early 30s, Buckhalter also could see how the story might end.

“It was never like I wanted to kill myself, but I was okay with not waking up or overdosing. I was okay with it, because I didn’t think I could ever live a normal life without all of the chaos that I’ve caused. And so I was okay with not waking up. As a matter of fact, a lot of the time that sounded like a good idea.”

‘He was desperate to get better’

Rockefeller researchers had trouble finding subjects for their study, despite West Virginia having more overdose deaths per capita than any other state. Because they were about to try something for the first time, the rigorous guidelines approved by the Food and Drug Administration required that their patients be “end-stage” drug users who faced the imminent possibility of death. They also had to have failed all other interventions; had to be physically healthy enough to withstand brain surgery; and needed strong family support, a place to land afterward. Relapses were very likely. The National Institute on Drug Abuse funded the research.

Buckhalter was an outpatient in a Rockefeller treatment program when James Mahoney, a clinical neuropsychologist, recruited him for the project. Buckhalter was hesitant. His parents were aghast. The doctors were, after all, proposing experimental brain surgery.

“You could tell he was desperate to get better,” said Berry, the psychiatrist. “He got to the point where he was willing to do whatever it took.”

Deep brain stimulation is one aspect of a therapeutic approach known as neuromodulation, a term that means trying to alter nerve activity in ways that will counter disease. Technically, the crude lobotomies and electroshock therapy of past decades were forms of neuromodulation, as are medications such as Prozac. Many argue that psychotherapy is a slow form of the same technique.

Today, with more sophisticated devices and much more knowledge of the brain, neuromodulation is performed with tiny electrodes implanted into appropriate parts of the brain or non-invasively with powerful magnets or ultrasound.

The FDA has approved deep brain stimulation for a variety of conditions, including depression, obsessive-compulsive disorder and epilepsy, but the most dramatic results have been achieved in movement disorders, especially Parkinson’s. More than 200,000 Parkinson’s patients around the world have implanted stimulators. Some arrive at the hospital with severe tremors and leave without them. Rezai has performed 2,600 implant surgeries.

About 15 years ago, researchers began to explore whether they could address more difficult behavioral conditions by modulating the nucleus accumbens, olive-sized structures on both sides of the brain that are critical parts of its reward system. Obsessive-compulsive disorder was an initial target, with some success.

But after Rezai implanted stimulators in the brains of three women to combat morbid obesity, one asked for the device to be removed and another died by suicide 27 months later. The study was halted, but regulators concluded the devices were not responsible for either of those results, Rezai reported in the Journal of Neurosurgery in 2018. The FDA, which also was one of the regulators of that research, declined to comment for this story.

In theory, sending electrical signals to the correct part of the brain could have multiple benefits for addiction: It would stimulate the release of natural dopamine, reducing cravings for drugs. It could improve decision-making and curb impulsivity by interfering with circuitry that connects the nucleus accumbens to other parts of the brain. And it might reverse physical changes to the brain caused by years of drug use.

But no one really knew what would happen in a human subject. And like some other drugs and surgeries, it’s not exactly clear why it works.

Buckhalter was awake for most of the seven-hour surgery, helping doctors by responding as they probed for the precise spots in his brain for the implant. Rezai then snaked the wires inside Buckhalter’s neck to the stimulator, a pacemaker-sized device implanted below his left clavicle. There is a visible lump when Buckhalter lowers the collar of his shirt, but otherwise, he said, he is largely unaware of the device.

The platinum-iridium alloy tips of the device each have four separate contacts, allowing doctors to fire electric pulses at different depths in the nucleus accumbens. They also can adjust the voltage, frequency, polarity and timing of the pulses, all with a simple tablet. Buckhalter’s continued sobriety is verified by urine testing.

Three months ago, the doctors replaced the first stimulator with a newly designed one that captures the electrical signals in Buckhalter’s brain. The researchers are comparing that data with Buckhalter’s subjective descriptions of his feelings and maps of his real-time brain activity that they are creating using functional MRI.

Last month, with FDA approval, Buckhalter was admitted to the Rockefeller hospital so researchers could put him in the MRI device. Without telling Buckhalter precisely when, so his expectations would not alter the results, they turned down the stimulator and eventually turned it off over a 72-hour period.

While he was in the MRI tunnel, they exposed him to photo cues of drug use — pills, Xanax, someone snorting white powder — as well as images of benign objects such as rocks and a wrench to chart the differences in brain activity.

They saw his agitation grow over the three days. When they restored the electrical stimulation, his mood changed in minutes. A video shows him visibly relaxing; soon, he reported reduced cravings and anxiety. “You could tell,” Mahoney said. “His body shifted.”

The next week, however, he complained of headaches and feeling strange. He visited the doctors each day for adjustments to the stimulator.

Brain stimulation for addiction, even if successful in a clinical trial, will never become widespread, said Darin Dougherty, director of the division of neurotherapeutics at Massachusetts General Hospital. But it could provide a lifeline for people with the most severe substance use disorders, who otherwise face years of misery that most likely will end in overdose deaths.

“It will always be a niche, but an important one,” he said. “It’s very important to have for end-stage illness. We don’t have very much to offer. And boy, we’ll take it.” (In China, he said, the operation is done much more frequently, but there has been no controlled trial to gauge its effectiveness.)

Casey H. Halpern, an associate professor of neurosurgery at Stanford University Medical Center who is conducting similar surgery in an attempt to treat binge eating, said Rezai’s work is groundbreaking.

“They are conducting pioneering work in humans inspired by years of data that has been collected from international centers, from animal and human imaging studies,” he said.

Another Stanford neuroscientist, Rob Malenka, wondered why the second surgery did not succeed. The Rockefeller doctors said that patient failed to engage with the process after the surgery, skipping counseling and other meetings before dropping out.

But in an experiment so new, Malenka said, it is also possible that his brain circuitry was different or the placement of the electrodes was off by a fraction of a millimeter.

“You have a big bowl of Jell-O and it’s opaque, and you have to take a chopstick and you have to place it so the tip of the chopstick is into the exact center of that bowl of Jell-O within two millimeters, without visualizing it,” he said of the surgery.

Even Rezai and his colleagues do not envision a future where people with substance use disorder routinely have devices installed in their brains. They are studying transcranial magnetic stimulation and focused ultrasound, noninvasive alternatives they hope will accomplish the same task.

“This is not a cure. And it’s not going to work for everybody,” Rezai said. “We need to study it more. But it’s for those who failed everything and they’re in a life-threatening situation. Our aim is to help those individuals, potentially, and learn more from the brain.”

‘I have a living problem’

Buckhalter’s father described the past 19 months as “Christmas every day.” His son now worries about his credit score and getting to work on time instead of where to find drugs or how to scam cash.

Buckhalter is acutely aware of how far he has come and how lucky he is to be the lone U.S. beneficiary of this experiment. He works as a peer counselor in a Morgantown sober-living home, helping 15 men in various stages of recovery with the same tasks that once seemed overwhelming to him: How to find a job. How to get an ID. How to obtain health care.

The former elite athlete plays on a softball team composed of people in recovery, guys who huff and puff on the base paths. A few months ago, he helped while a resident of the house used naloxone to revive a woman who had overdosed at a homeless camp under a nearby bridge.

Buckhalter credits the leaders of West Virginia Sober Living for taking him under their wing after the surgery, giving him a job and helping him begin his road back. He also feels a responsibility to make amends for the harm he has caused and to pass on the gift he has received.

But he is not yet ready to look too far into the future. Mostly, at 35, he wants a normal life. And he recognizes he’s not there yet.

“I have a living problem and that’s the biggest thing,” he said. “I didn’t know how to live a normal life outside of using drugs. I didn’t know what a meaningful friendship was. I didn’t know how to be a good son. I didn’t know how to be a reliable employee. I didn’t do well with authority. I treated women like s ---.

“I still struggle with those things. I’m definitely not where I would say I want to be.”

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