Transformation through Innovative Brain Mapping: A Breakthrough for OCD Patients

Five years ago, Julia Hum was admitted to a state mental hospital in Massachusetts while using a wheelchair.

Now, after receiving targeted deep brain stimulation treatment, she is looking forward to soon walking out of the hospital and living independently in her own apartment for the first time in her adult life.

Hum, 24, struggles with severe obsessive-compulsive disorder (OCD). At one point, her OCD led her to harm herself and made it difficult for her to eat and drink.

Hum shared, “My OCD made me believe that food and drinks were contaminated.” She would have thoughts telling her that her food contained parasites or harmful chemicals.

She expressed her awareness of the irrationality of her thoughts, emphasizing her strong desire to be healthy by gaining weight and consuming adequate food and fluids. However, the doubts in her mind were overpowering, making it difficult for her to focus on anything else.

As her heart rate and blood pressure became unstable, she found herself relying on a wheelchair for mobility. To address her nutritional needs, doctors utilized a tube inserted through her nose into her stomach for feeding and administered fluids intravenously.

Deep brain stimulation for severe obsessive-compulsive disorder helped Julia Hum earn her high-school equivalency certificate last year.

Julia Hum shared that she is now in a much better state after receiving treatment. In August, she proudly received her high-school equivalency diploma. She happily posed for a photo with the certificate, showing a wide smile on her face. Julia is no longer engaging in self-harm, and she is able to eat and drink normally. She also mentioned that intrusive thoughts are no longer dominating her life.

Hum shared that her OCD used to control her life, but now it feels more like a minor inconvenience. She compared it to a pesky passenger on a ship.

Thanks to groundbreaking research, she and her medical team were able to target a specific dysfunctional circuit in her brain with a device called a deep brain stimulator. This device functions similarly to a pacemaker, providing precise treatment for her condition.

Deep brain stimulators have been utilized for the past twenty years to treat movement disorders such as Parkinson’s disease and dystonia. In recent years, their applications have broadened to include mood disorders like depression, as well as other neurological conditions like Tourette’s syndrome and OCD.

These devices consist of two electrodes that specifically target the subthalamic nucleus, a small structure deep within the brain that is about the size of a pea. Within this node, which resembles a contact lens, there are over half a million nerve cells.

It's a central point where signals travel between the outer and inner layers of the brain, acting like a switchboard according to Dr. Andreas Horn, a neurologist at Massachusetts General Hospital's Brain Modulation Lab.

Doctors place electrodes near the subthalamic nucleus and fine-tune the settings using a pulse generator implanted under the skin of the chest. Following a two-week healing period post-surgery, they activate the electricity and make adjustments to determine what brings comfort to the patient.

“I’ll suddenly feel lighter, my rituals will slow down, and I’ll sit up straighter and feel more energy,” as an example, Hum said.

Refining deep brain stimulation

Hum had a deep brain stimulator implanted in 2021.

Her psychiatrist, Dr. Darin Dougherty of the Mass General Research Institute, said it didn’t initially give them the results they’d hoped for.

Hum described a cycle where they would discover settings that felt great initially, but the effects would wear off after a month or two, causing them to regress.

Researchers are making progress in understanding why deep brain stimulation can be life-changing for some people, but not as effective for others.

In a recent study published in the journal Nature Neuroscience, Horn and an international team of researchers analyzed data from over 530 electrodes implanted in the brains of 200 individuals with Parkinson’s disease, dystonia, Tourette’s syndrome, and OCD.

They examined the locations where the devices were stimulating each person’s brain and the level of improvement observed. This information was then utilized to create maps of the nerve networks that appear to be affected in each of the four disorders.

Horn explained that the concept involves studying a group of patients to see who improved after treatment and comparing them to those who did not improve much. This helps identify the best location and possibly the best network to stimulate.

Obsessive thoughts often center around things people care most about, experts said.

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The team used their maps to adjust deep brain stimulators for three patients, including Hum.

All of them experienced significant improvement in their symptoms.

Dr. Sameer Sheth, a neurosurgery professor at Baylor College of Medicine in Houston, who was not part of the study, finds the research promising as it involves a large group of people. However, he believes that testing it on only three individuals may not provide enough evidence to confirm the accuracy of these brain maps.

Sheth, who also treats people with deep brain stimulation, mentioned that this information has not been tested in a new set of patients in real-life situations. This is what they are currently working on.

If the positive results can be replicated in more patients, then action should be taken. Sheth suggested that implants should be done with a specific profile in mind, such as for patients with OCD.

Doctors can now see the fibers they need to stimulate for the best chance of helping people get well, thanks to the maps created by Horn's team and a special type of magnetic resonance imaging called diffusion imaging. This has given hope back to many individuals.

Obsessive thoughts often center around things people care most about, experts said.

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Each electrode implanted for the therapy has multiple points of contact that doctors can use to stimulate different brain areas.

Dougherty said they were able to identify the contacts closest to the fibers that could provide the most help for Hum.

Hum noticed a significant improvement after adjustments were made to her settings in August.

Hum shared that using therapy has helped her to focus better. She finds that she can participate more effectively in therapy sessions, and she has been successful in separating her thoughts from her actions.

She mentioned, "I can now correctly identify a thought as OCD-related and not a true reflection of myself. This allows me to decide not to participate in a ritual."

She can enjoy a wide variety of food and drinks without any limitations.

Hum shared that when she received her deep brain stimulator, her initial hope was simply to have some semblance of a life. However, her expectations have since grown exponentially.

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She wonders about going to college, living independently, and having a steady job. And she also wonders about love.

"Can I have a good relationship with a boyfriend and experience all the things I've missed out on until now?" she asked.

Hum expressed her difficulty in putting into words the gratitude she holds for the doctors and researchers who assisted her. She shared that she had lost hope and could not envision a future for herself. However, their help reignited a sense of hope within her, similar to a light at the end of a tunnel.

“It gave me my hope back.”

Editor's P/S:

Julia Hum's story is truly inspiring, showcasing the transformative power of deep brain stimulation in treating severe OCD. Her journey highlights the devastating impact that OCD can have on an individual's life, leading to self-harm and severe nutritional deficiencies. However, thanks to advancements in medical technology and the tireless efforts of her medical team, Julia has regained her health and independence. The development of brain maps, which guide the precise placement of deep brain stimulators, has significantly improved the effectiveness of this treatment.

The article also underscores the importance of continued research to further refine deep brain stimulation and optimize its outcomes. The fact that Julia's symptoms initially improved but then regressed emphasizes the need for ongoing monitoring and adjustments to the device's settings. The promising results from the study conducted by Dr. Horn's team, which analyzed data from over 530 electrodes implanted in the brains of 200 individuals, provide hope for further advancements in the treatment of OCD and other neurological conditions.