Skip to cookie consent Skip to main content

Deep Brain Stimulation Treatment Returns Hope to an Aspiring College Student

7 minute read
Julia Hum, deep brain stimulation patient

Due to her severe obsessive-compulsive disorder (OCD) symptoms, Julia Hum has spent much of her teen and young adult years as an inpatient on the med-psych floor of a state hospital. Now, after an innovative course of treatment with deep brain stimulation from her team at Mass General Brigham, Julia is on the discharge list and ready to tackle college and more, highlighting the potential of research-informed care to improve patients’ lives.

A life disrupted 

At 24, Julia’s battle with mental health has dominated her life for too many years.

“In the past nine years, I have not spent more than two months out of inpatient treatment,” said Julia, who lives with a severe form of OCD, a mental health condition characterized by intrusive thoughts and repetitive behaviors that can significantly disrupt daily life.

Julia’s symptoms made it difficult for her to eat or drink due to fear of contamination. Julia spent years on a feeding tube to get her necessary nutrients, and she struggled with depression, anxiety, and self-harm. Despite years of treatments, including exposure and response prevention therapy and various forms of talk therapy and medications, Julia's symptoms persisted.

As the director of the Division of Neurotherapeutics in the Department of Psychiatry at Mass General Hospital (MGH), Darin Dougherty, MD, takes care of patients with severe illness. Many patients, including Julia, have been chronically ill for a long time and are refractive to treatment before neurosurgery.

“People don’t realize that OCD can be a deadly illness,” said Dougherty.

Dougherty and Julia’s care team at MGH encouraged her to consider deep brain stimulation (DBS), a surgical procedure involving the implantation of electrodes into a patient’s brain to target neural circuits involved in OCD. These electrodes are then activated to stimulate specific areas of the brain, with the goal of improving obsessions and compulsions. DBS is only recommended for a small fraction of patients who have the most severe symptoms.

“When my doctors initially mentioned DBS, I dismissed it as too extreme,” Julia recalled. “But I eventually reached a point where I felt I had no other option. I thought, ‘If this doesn’t work, nothing will.’”

Horn’s team identified fiber bundles associated with symptom improvement following deep brain stimulation in Parkinson’s disease (green), dystonia (yellow), Tourette’s syndrome (blue), and obsessive-compulsive disorder (red).

Research-informed care 

The DBS process involved some trial and error as her team experimented with different stimulation settings.

“For conditions like OCD, we have to rely on subjective responses when determining where to deliver electrical stimulation,” said Dougherty. In Julia’s case, the team would find a setting that would work for a month or two, and then she would lose some of her progress.

Findings from a new research study led by Andreas Horn, MD, PhD, of the Center for Brain Circuit Therapeutics, and his colleagues at Mass General Brigham held promise for improving Julia’s treatment.

Horn’s team analyzed data from DBS electrodes in patients with various neurological disorders to map a “human dysfunctome,” a collection of dysfunctional brain circuits and neural networks associated with Parkinson’s disease, dystonia, OCD, and Tourette’s syndrome.

Julia’s care team applied Horn’s findings to fine-tune Julia’s DBS treatment, using this “brain mapping” technology to select the potentially beneficial contact on the DBS electrodes already implanted in Julia’s brain.

Shortly after, she felt a significant improvement in her symptoms.

“Something clicked. I could finally focus,” Julia said. “Once the DBS was calibrated, I was finally able to really work with all the amazing and patient staff that work with me in the hospital. I still experience intrusive thoughts, but they are more manageable, and I feel like I've learned how to separate myself from the grip of OCD."

Dougherty says the research added a layer of information to help them find the right targets.

“Dr. Horn’s study helped us find the sweet spots that were most likely to help Julia,” he said. “It’s a great example of the research and clinic coming together to get the best odds of improving life for a patient.” 

If there is one thing I would tell others, it’s that I think there's no such thing as a hopeless case. It's just that you haven't found a treatment that works for you yet, and you have to keep pushing through. You aren’t broken.

Julia Hum
Patient

Harboring hope

Now, after years of inpatient treatment, Julia finds herself finally on the state hospital’s discharge list and harbors hope for her future. “To be at this point is kind of exciting and terrifying,” she said. “Ultimately, I want independence. I want my own house, a job I love. I want to have a relationship. I want to earn a college degree. And I can’t wait to experience going to the beach!”

Julia has been venturing out of the med-psych unit on passes to dip her toe into everyday activities, grocery shopping and taking public transportation. This fall, she will embark on her journey towards a college degree, enrolling in online classes at the University of Arizona while continuing to reside in Massachusetts near her DBS team.

She aspires to earn a history degree with a focus on medical history, a passion partially inspired by her experiences as a patient. Her ultimate goal is to pursue a career in museum studies or archival work. “Medical history is such a vulnerable side of humanity,” she explains. “It’s the crux of societal values and what makes societies function, and it helps us understand so many other things. I love it.”

'Keep pushing through'

Julia appreciates the support and attentiveness of her team at MGH, recognizing the pivotal role they've played in helping her achieve her goals. “They’ve been amazing,” she said. “They’ll come out to me at the state hospital, so I don’t have to come into the office. When I was at the point where I was giving up, they swooped in and gave me my hope back.”

Thanks to her positive experience, she urges other patients grappling with severe OCD to consider DBS treatment. “Sometimes you need to take the risk,” she said. “Even though there’s a chance it’s not going to work, if it’s between that and not having a life, which is really the other option, take it.

“If there is one thing I would tell others, it’s that I think there's no such thing as a hopeless case. It's just that you haven't found a treatment that works for you yet, and you have to keep pushing through. You aren’t broken.”