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Patient view: Life after deep brain stimulation for PTSD

Video by Monica Matys and text by Jennifer Palisoc

On February 7, 2019, Serena Kelly became the first patient in Canada to be treated with deep brain stimulation (DBS) for treatment resistant post-traumatic stress disorder (PTSD) as part of a new clinical trial.

DBS is a procedure that involves implanting electrodes that are connected to a small battery pack – like a pace maker – which sends electrical impulses to help regulate a part of the brain. The electrodes are precisely placed in a specific brain structure, targeted by doctors. This novel trial at Sunnybrook, investigating DBS for PTSD, is a Canadian-first.

“It has been 4 months since having the deep brain stimulation procedure and there has been such an incredible change,” Serena says with a big smile.

Learn more: First in Canada trial - DBS for treatment-resistant PTSD

Serena’s PTSD before deep brain stimulation

“Before this surgery – living with PTSD was like living in a prison of fear. I felt like danger was everywhere,” explains Serena.

Serena’s diagnosis followed multiple sexual assaults, years of abuse by a former partner, and the traumatic death of her daughter, Harley, as the result of a motorcycle collision in 2017.

“I lost her in such a horrific way,” says Serena. “Of all the traumas in my life, losing Harley so suddenly and so violently impacted me the most.”

One of the biggest triggers for Serena was the sight and sound of sport bike motorcycles. A ‘trigger’ is like a flashback that reminds a person of a past trauma.

“Just the sight or sound of a sport bike motorcycle would lead to a full-blown panic attack. I’d start shaking, crying uncontrollably and hyperventilating,” she explains. “I wasn’t able to drive by myself, and if I saw or heard one of these motorcycles, I’d have to pull over and it would take a long time to calm down.”

After deep brain stimulation

About nine weeks after the deep brain stimulation procedure, Serena started to notice a change.

“I was filming our son playing baseball at a nearby park when a sport bike motorcycle drove past, and I didn’t react,” she says.

Watching this unfold before him, her husband pointed out in amazement that she wasn’t having her usual response to the dreaded trigger.

“I had a brief anxious feeling in my chest, but it was nothing close to what it used to be,” she explains.

At ten weeks post-surgery, Serena was driving by herself again for the first time in almost two years. The remarkable video above shows Serena calmly behind the wheel, despite the roaring sound of the motorcycle as it passes.

“It’s awesome! Just awesome!” Serena exclaims watching the moment that her husband captured on video.

Learn more: Patient FAQ - deep brain stimulation

“This takes a huge amount of perseverance and courage”

“Serena has had remarkable improvements in her PTSD-symptoms,” says Dr. Nir Lipsman, director of the Harquail Centre for Neuromodulation. “Research has found that after deep brain stimulation, while some patients improve within a few months, some may not improve, and others may see a difference after several months or longer. Other factors come into play as well, like age, medication and severity of PTSD. We don’t know if it’s related to neurochemical or circuitry changes that need to happen to the brain, but we know that it does take time. ”

Experts say for individuals with PTSD, one of the key parts of the brain that is overactive is the amygdala, which plays a role in a person’s emotions, and leads to feelings of anxiety and fear. With deep brain stimulation, researchers believe the brain becomes better able to control the activity in the amygdala, helping patients to regulate their emotions.

“Serena has also put in a lot of hard work in terms of working on numerous strategies. For example, she’s been incrementally exposing herself to the cues that trigger her anxiety, gradually undergoing desensitization,” says Dr. Benjamin Davidson, a surgical resident on Dr. Lipsman’s team who is helping to coordinate and run the trial.

“This takes a huge amount of perseverance and courage. Serena has approached this with an amazing attitude, and that has no doubt been a pivotal part of her improvement,” Dr. Davidson adds.

“It is important to continue engaging and receiving regular long-term psychiatric care. DBS on its own is not enough. It requires, in addition to that, comprehensive psychiatric care and a multi-disciplinary approach to disorders that are so challenging and disabling for patients,” says Dr. Lipsman.

The clinical trial continues

Sunnybrook researchers are continuing their ground-breaking DBS work pursuing new treatment options for PTSD.

This phase I trial will include five patients, aged 18 to 70, who have been diagnosed with treatment-resistant PTSD.

“It’s important to note, while we are hopeful, this clinical trial is investigating the safety of deep brain stimulation in treatment-resistant PTSD,” says Dr. Lipsman. “Of the more than three million Canadians who suffer from PTSD, about 20 to 30 per cent do not respond to therapy and medication, and it is important for us to investigate the next generation of possible treatments for patients.”

The next chapter: “I feel like I have my life and freedom back”

Serena says living with PTSD isn’t easy and she continues to struggle with some mild depression, even after DBS.

Despite this, she says DBS has made a big difference in her everyday life.

“Before DBS – I wasn’t really living anymore. I was just surviving. PTSD ruled my life and I was just trying to make it through each day.”

It’s a different story now, one that she hopes will help raise awareness about PTSD, and help give hope to others who are suffering from this debilitating illness.

“I don’t feel like danger is lurking around every corner anymore,” says Serena.

In July 2019, five months after under going deep brain stimulation for treatment-resistant PTSD, Serena learned she was accepted to university. Serena will be working towards her Psychology degree and heading back to school in September.

“Before taking part in the DBS for PSTD clinical trial, I had given up all hope of returning to university. My PTSD was so severe that I just didn’t believe it was ever going to be possible. The incredible work of the clinical trial team has allowed me to break free of the prison that was my PTSD, and made what once seemed impossible, very much possible! I am absolutely ecstatic to be returning to school in September and filled with so much joy and hope for the future,” says Serena.

“I feel like I have my life and freedom back, and it’s absolutely incredible!”

To learn more about the clinical trial, contact the Harquail Centre for Neuromodulation at Sunnybrook.

Read more patient stories from Sunnybrook's Hurvitz Brain Sciences Program