When David Boyan became the fourth patient to undergo deep brain stimulation (DBS) for obsessive compulsive disorder (OCD) at the University of Colorado Anschutz in 2018, what he remembers most about lying awake on the surgical table during the procedure is an intense desire to talk.
Boyan suffers from a mental illness that repeatedly fills his brain with dark, frightening thoughts, impeding his ability to think and function normally. By the time he made it to that operating room, Boyan had tried every treatment he could find to quiet his brain, stop the compulsions and experience joy without success.
Then DBS renewed his hope.
“I feel lucid. I feel peaceful,” he recalls telling the surgical team, which often performs the procedure with the patient awake to help guide placement and assess side effects. “I would love to talk history with you or talk about the Yankees. I just want to converse. I want to contribute to the conversation and listen and be a human.”
Today, that “monumental” moment, along with an “amazing” six weeks that followed, is only a memory. Boyan’s improvements were temporary. But the experience inspired his recent decision to try the surgery again.
“Since my diagnosis, I've seen and had experiences with therapists, psychiatrists, medications, priests, books, articles and then brain surgery," said Boyan, 57, who knew something was “different” with his mind growing up in New Jersey but wasn’t diagnosed until moving to Colorado to attend CU Boulder.
Ultimately, after eight years of teaching high school history followed by a good, decade-long run as a coffee shop owner, his uncontrolled symptoms grew too intense. Boyan, who now lives in southeast Denver, had to give up his business and stop working.
In 2018, a therapist sent Boyan to psychiatrist Rachel Davis, MD, the director of the CU Anschutz OCD Program. Davis was helping launch the surgical program for treatment-resistant OCD offering DBS, a groundbreaking therapy that has had notable success with neurological disorders such as Parkinson’s disease.
“She definitely has her finger on the pulse of OCD more than any other professional I’ve worked with,” Boyan said, adding that he trusted Davis and felt truly understood by her from the start. “She gives me hope.”
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Davis, the director of adult psychiatry in the CU Anschutz School of Medicine, is helping the university break ground with DBS for mental illness. Her team has treated nine patients with OCD, one with depression, two with Tourette syndrome and recently received approval for a DBS clinical trial for schizophrenia.
Her commitment to finding answers for patients with serious mental illness is both professional and personal. Davis has OCD, a diagnosis she openly shares to help conquer stigma and offer patients hope.
OCD, which generally can be controlled with therapy and medications, causes unwanted, intrusive thoughts (obsessions). “These thoughts are usually the most horrible thoughts that anybody could imagine: violent, embarrassing, gross,” Davis said. Patients respond with compulsions (repetitive mental or physical acts) in an attempt to ease their distress.
“The thoughts go against someone's values,” Davis said. “So someone might be afraid that they're a pedophile, and they're the farthest thing from being a pedophile. So the compulsions are done to try to make the obsessions less scary or to make them go away,” said Davis, who, like Boyan, would often bargain with God as a child to try to banish the thoughts.
About 10% of OCD cases are as severe as Boyan’s. So far, DBS is reserved for those severe, treatment-resistant cases with other specific eligibilty requirements.
“These are patients who have tried everything and not responded. That’s what drives me to keep pushing the boundaries of what we can offer and try things outside the box,” Davis said.
“Deep brain stimulation has a 70% response rate (with a 35% reduction in symptoms or better, in line with the worldwide average), which is remarkable in these patients who have suffered their entire lives. My dream is to make these advanced therapies more accessible to patients.”
CU Anschutz is one of few academic medical campuses in the country that provides DBS for treatment-resistant OCD. Performed by a multidisciplinary team of neurologists, neurosurgeons and psychiatrists at UCHealth University of Colorado Hospital, DBS involves placing electrodes in targeted areas of the brain.
To pinpoint exact lead and extension wire placement, surgeons use stereotactic brain mapping, an advanced 3D coordinate-based navigation technique, along with microelectrode recording to listen to brain cell activity. The wires are then threaded from the electrodes in the brain down the neck to a pulse generator (similar to a heart pacemaker) implanted in the chest wall.
The most commonly targeted area for OCD is the Anterior Limb of the Internal Capsule (ALIC), a region of white matter involved in cognitive control and decision-making. In Boyan’s recent surgery, the team this time targeted the subthalamic nucleus (STN), part of the basal ganglia. While the area has been used for OCD in DBS less often, it has shown success – which Boyan appears to be experiencing.
Boyan said he has noted “small” but “meaningful” improvements since the July 22 surgery. “I feel a little more free, a little less anxious.” He recently has been able to do things that previously were impossible or extremely difficult for him, including gardening, cooking, talking with neighbors, reading, volunteering and eating, which has always caused anxiety and lacked joy for Boyan.
“I’m watching more baseball and listening to more music,” all things that he has missed, he said.
Although scientists do not fully understand how DBS works, the leading theory is that electrical stimulation changes activity in brain networks associated with OCD.
Targeted areas are deeper structures of the brain involved in more primitive, survival sort of responses along with reward processing and decision-making, Davis said. “Then there's the orbitofrontal lobes, which take in information from the environment.” In OCD, the “primitive” structures and orbitofrontal lobes are hyperconnected, she said.
So when information enters the brain, such as a bad thought, it leads to a reaction. The hyperconnectivity doesn’t give the person time to process the thought or make decisions based on values and logic.
When they work, DBS (and therapy and medications) decrease this hyperconnectivity between the regions of the brain. “So then that person – and this is overly simplified – has time to process and make decisions based on external factors and goals and values.”
Boyan has become more flexible in his thinking since the second surgery, said Emily Hemendinger, MPH, a licensed clinical social worker and director of the OCD Program who has known Boyan since 2019. “He is able to take perspective on things and not get as stuck in his compulsions,” she said.
“The differences and improvements I’m seeing are amazing,” Hemendinger said, adding that his ability to read again and to volunteer are “major” advancements.
Being able to continue his progress in processing thoughts and making decisions based on logic would change Boyan’s life, who said he has become a “good actor” in hiding his symptoms. He frequently feigns a headache to disappear from social situations, so that people won’t see the compulsion side of his disease, he said.
“If I have to fill out a form that says it will take about 10 minutes, it will take me an hour,” he said, describing the intrusive thoughts as “maddening” and “relentless.” He’s failed tests on material he had mastered because of the chaos in his brain and missed work because he had to recite a prayer perfectly so that he wouldn’t go to hell.
“Now if you ask me, ‘Do you really believe that? Do you have to keep sitting back down and re-reciting the prayer, or God is going to punish you?’ I'd be like, ‘No, absolutely I don't believe that.’ But the anxiety and the pain is so acute, I just have to do it.”
“Now if you ask me, ‘Do you really believe that? Do you have to keep sitting back down and re-reciting the prayer, or God is going to punish you?’ I'd be like, ‘No, absolutely I don't believe that.’ But the anxiety and the pain is so acute, I just have to do it.” – David Boyan, describing a compulsion with OCD
Boyan had “gotten a taste” of what life could be like in that first six weeks after his initial surgery. He took a trip back home to New Jersey, where he actually “enjoyed” a Yankees game, eating a hot dog and having conversations.
“It's amazing,” he said of experiencing the results, comparing it to suddenly regaining a physical ability that was lost. It's that impressive.”
For now, Boyan is just holding onto the hope that has always driven his search for help.
“It feels good to know I’m moving in the right direction,” he said. “My hope is that I continue to improve – tomorrow, next week, six months from now. I just don’t want to go backward. If I didn't have any hope, I wouldn't be doing this. I'm never going to give up.”
Key points:
- Deep brain stimulation is an advanced treatment option available at CU Anschutz for some patients with treatment-resistant, severe obsessive-compulsive disorder (OCD).
- OCD is a serious mental health illness characterized by intrusive, often frightening thoughts followed by compulsions in an attempt to make the thoughts go away.
- Severe, treatment-resistant OCD is a disabling illness.
- DBS uses implanted electrodes to electrically stimulate targeted brain regions associated with OCD symptoms.
- At CU Anschutz, more than 70% of patients treated with DBS have had a lasting reduction in symptoms of 35% or greater, in line with the world average.