He washed his hands until it looked like they’d been in a fight. He couldn’t stand the presence of fast food. He found anything with connotations to the southern United States entirely repulsive. Jon Blank knew none of this made sense. But his obsessions and compulsions, exhausting and extreme to the point that his voice had eroded to a listless monotone and he could no longer hold down a job or focus on school, were a product of something deeper, driven by forces beyond his control. His obsessive-compulsive disorder had swamped the ability of standard treatments to provide relief.
Blank’s care team at UCHealth University of Colorado Hospital on the Anschutz Medical Campus (UCH) told him one option remained: deep brain stimulation, or DBS. If he had the surgery, his odds for a turnaround would be about 50-50. Less certain was whether outside factors would let him into the operating room in the first place.
Deep brain stimulation for OCD
Deep brain stimulation has been a U.S. Food and Drug Administration-approved therapy to help patients with essential tremor since 1997, Parkinson’s disease since 2002, and dystonia since 2003. Tens of thousands of patients with these movement disorders have undergone the procedure, which places electrodes deep in the brain and, in follow-on surgeries, implants batteries to supply an adjustable amount of electrical stimulation to those electrodes.
In 2009, the FDA approved deep brain stimulation for obsessive-compulsive disorder (OCD) that’s severe to extreme, which isn’t a movement disorder. The approval hinged on an FDA Humanitarian Device exemption, which applies to treatments for diseases rare enough that it’s difficult to impossible to enroll enough patients to run effective clinical trials. While OCD diagnoses are common – about one in 40 people will experience it at some point – its severest forms are rare. The exemption – rather than full FDA approval – has led to high hurdles for deep brain stimulation for OCD patients.
The first DBS surgery was on a UCH patient in 2015. To do so, physicians had to demonstrate to the hospital’s Institutional Review Board that DBS has been shown to be safe as well as effective for OCD patients – normally, the board vets clinical trials, not proven procedures. Each year, doctors have repeated the process, showing outcomes, listing complications, and referring to new literature on DBS for OCD patients.
Also standing between Blank and the operating room was the requirement that the patient have severe to extreme OCD – but not oft-associated diagnoses such as bipolar disorder, substance use, or severe personality disorder.
Those who clear that checkpoint must have exhausted other proven treatments, which include serotonin-boosting drugs, an antipsychotic, a benzodiazepine, and cognitive behavioral therapy with exposure and response prevention therapy (ERP).
And finally, there was the question of insurance. Despite the FDA Humanitarian Device-exception approval, many insurance plans still classify DBS for OCD as investigational and won’t pay for treatments. Patients with severe OCD who are old enough to be off their parents’ insurance – Blank was 28 – are often on Medicaid, which covered it for Blank.
Blank proved to be among the few who have made it through the gauntlet. In January and February 2018, Blank had three surgeries: placing electrodes on the left and right sides of Blank’s brain, inserting battery packs on either side of his upper chest, and connect the wires. On Feb. 22, 2018, Dr. Rachel Davis activated and programmed the device in a CU School of Medicine clinic room.
Movement disorders such as Parkinson’s disease and severe OCD seem very different. But they’re closely related neurologically. For those with Parkinson’s disease, the most common DBS target is the subthalamic nucleus – more specifically, the part of it that includes the motor circuit. But if the electrode ends up a bit farther forward, it lands in the subthalamic nucleus’s limbic territory, which controls behavior. This is where OCD treatment comes in.
Serious OCD manifests when reward circuitry goes haywire, rendering its victims unable to feel a sense of completion that lets them move on to the next task. Davis says functional MRI studies have shown impairment in brain systems involved in goal-directed behavior and an overemphasis on brain systems associated with habitual behaviors. In addition, those with OCD have less tolerance for feelings of uncertainty than those without the disorder, she says. Although the precise mechanisms remain mysterious, DBS seems to calm the circuitry connecting the deep brain’s behavioral centers and the surface-brain regions where conscious decision-making takes place.
There’s a video of Blank and Davis in the exam room when Davis programmed the DBS controller. As Davis adjusts the voltage, she asks, “Right now, how do you rate your energy?”
“Three,” Blank says.
“How about your anxiety?”
She asks: “What feels different?”
“I mean, I’m a bit more talkative, which always means my mood and energy’s better,” Blank says. “Still very slack at this point.”
Davis adjusts. “Anything different here?”
“No, not really.”
She adjusts again. “Here?”
“I feel a little bump on that one,” Blank says. Then: “That feels good. I love it!” He smiles and looks toward the ceiling. Then he laughs. A bit later, he tells Davis: “I just feel good.”
On with life after deep brain stimulation for OCD
A year and eight months later, Blank’s hands are unmarred. His feelings for fast food and the American South are south-of-neutral to positive. He describes an epic day on his snowboard last season with his twin brother Robert just after a major storm.
“We had waist-deep fresh powder for a crazy amount of time,” he says.
He sees Davis once every three months to check in and adjust the top and bottom voltages programmed into Blank’s handheld DBS controller, which he can hold close to an implanted battery to wirelessly fine-tune voltages himself within those limits – if, say, he feels OCD creeping in, or if he notes flagging motivation and energy.
“Just the feeling of pushing a button and have your brain feel like it’s climbing – I wish other people could experience it,” he says.
He’s been dialing up the voltage of late, and for a good reason. In August, Blank started a three-year master’s-degree program in landscape architecture. He’s taking a full load of five graduate-level classes. It’s demanding and there’s a lot of pressure, but he loves it, he says.
“It’s been the craziest, hardest, most challenging thing I’ve ever done. It’s really cool,” he says. “It took me 30 years, but I think I’ve actually figured out what I want to do as a career.”
UCHealth neurosurgeons will continue to plow through the necessary paperwork to perform DBS surgeries on OCD patients, they say. The only way to improve our understanding of why DBS works or doesn’t for OCD patients is to push ahead.
“It would be nice to be able to use this on people who are less severely ill,” Davis says. “Obviously there are risks, but many of the medications we use have comparable risks as well.”
The ultimate motivator is that patients such as Blank benefit so greatly.