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Patient view: How deep brain stimulation changed Sarah’s life

How deep brain stimulation changed Sarah’s life
Written by Samantha Sexton

*Only first name is being used for patient privacy.

After living with the symptoms of depression and post-traumatic stress disorder (PTSD) for more than a decade, Sarah* had tried numerous medications, electroconvulsive therapy (ECT), and was engaged in psychotherapy, but at a certain point nothing was working.

“I did everything right and I was trying my best to live a productive life [despite my symptoms], but I was struggling,” says Sarah.

Triggers or reminders of Sarah’s past traumas would lead to feelings of crippling fear, dissociation and depression that would make it difficult to get through the day.

“I was constantly jumpy and on high alert, trying to avoid situations that would bring back memories,” says Sarah. “I consistently withdrew from people and my world became really, really small.”

A ground-breaking clinical trial: deep brain stimulation for PTSD

In early 2020, Sarah was referred to a clinical trial at Sunnybrook investigating a new approach for treatment-resistant PTSD called deep brain stimulation (DBS). DBS is a type of brain surgery that directly targets dysfunctioning brain circuits. It involves inserting thin electrodes into brain structures that are responsible for associated symptoms and electrically stimulating them with a pacemaker-like device, which is implanted in the chest.

Researchers at Sunnybrook had launched a first-in-Canada phase I trial investigating the therapy.

“When I learned about DBS, I didn’t have any hope but I was willing to try anything,” says Sarah. “I thought best case scenario – maybe this research will be able to help someone else.”

Finding hope after deep brain stimulation

During the procedure, Sarah remembers a moment when the surgical team stimulated a certain part of the brain: “it immediately seemed brighter in the room. That was the first indicator, something changed in that moment, and it gave me a little bit of hope.”

The weeks after surgery when the device was turned on, Sarah’s friends and family began noticing a change.

“I didn’t feel significantly different right away, but my family members said they saw a sparkle in my eyes like there was life in me again,” says Sarah.

In the year following surgery, she had landed a new job and applied to nursing school.

“DBS changed my life. I was finally starting to think about the future again.”

Sarah notes that she has seen significant improvement in her quality of life, but it “wasn’t magic and takes a lot of work”. She still experiences symptoms from time to time.

“I’m doing really well, but it doesn’t mean every day is perfect. Something can trigger me, but the difference is, now I notice it and move on. It doesn’t mess me up for hours. I can come back from it.”

A new lease on life

Sarah says one of the most powerful things about DBS is how it reaffirmed her mental illness as physiological. “When I would get my levels adjusted, I would see a change. It wasn’t about how hard I was trying or what was happening around me. It’s beyond my control. That was really powerful.”

Two years post-surgery, Sarah is doing well. She’s now in nursing school and this year had the opportunity to come back to Sunnybrook as part of her clinical nursing rotation.

“[Before DBS], I was frozen, living in a constant state of fear. Now, I feel free and present,” says Sarah.

“It’s so surreal. Two years ago, I would have never imagined I’d be here.”

Read more: Deep brain stimulation (DBS) shown to be safe in treating post-traumatic stress disorder

About the author

Samantha Sexton

Samantha is a Communications Advisor at Sunnybrook Research Institute.

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