After experiencing seizures every other week, Christine Kauzen has been seizure-free for months since receiving one of the first rare treatments of its kind in Canada — a neurostimulation device surgically implanted into her skull.
The 26-year-old, who lives in London, Ont., was diagnosed with epilepsy in 2020 after a series of what were initially believed to be panic attacks, which progressively became more severe. Kauzen had seizures that could last up to three days at a time.
“I had a convulsion seizure in October 2020 and was taken to hospital by ambulance. It was determined I had epilepsy; a specific kind that affects both my temporal lobes, meaning it was more difficult to diagnose because of how they presented,” Kauzen said.
“Immediately my life changed.”
Kauzen’s seizures began to take over her life, causing severe memory loss and forcing her to leave college and work. They manifested as episodes of loss of awareness, feelings of disconnection, déjà vu, confusion, heart palpitations and even the sensation of being watched.
“My seizures were happening every other week for a period of three days at a time, and sometimes it was even more frequent. This would reset my memory every single time and I would lose memory of the days I had seizures and those leading up to them,” she said.
“It kind of followed a pattern — usually happening on Mondays, Tuesdays, and Wednesdays — and I have no idea why,” she said. The seizures often came in clusters, with about five to ten a day. After each episode, she needed a full day to recover, as they completely drained her.
Dr. David Steven (left) with Christine Kauzen (right).
London Health Sciences Centre
Kauzen is one of 260,000 Canadians living with epilepsy, a neurological disorder of the central nervous system that affects the brain and is characterized by recurrent seizures, according to the Canadian Epilepsy Alliance.
Seventy per cent of people with epilepsy can gain seizure freedom with medication alone, but the remaining have drug-resistant epilepsy. Kauzen was the latter.
Kauzen did not respond to medication and, because both her temporal lobes were causing the seizures, surgical removal was also not an option.
With limited treatment options, Dr. David Steven, a neurosurgeon at London Health Sciences Centre, recommended surgically implanting a Responsive Neurostimulation (RNS) device into Kauzen’s skull to help manage her seizures.
“You can think of it like a pacemaker for the brain. Two electrodes are implanted in a specific part of the brain. And then those electrodes measure electrical activity and can detect if a seizure is happening,” he said.
“They are attached to a mini little computer that’s embedded in the skull. And then that computer makes a decision as to whether the patient is having a seizure or not. If it detects seizure activity, it can deliver an impulse very similar to a heart pacemaker and hopefully prevent the patient from having a seizure,” Steven explained.
The challenge with this device is that it is not approved for use in Canada, although it is available in the United States. This is because the company has not yet sought approval from Health Canada, Steven said, adding that he hopes this will change in the near future.
“It’s been available for a while in the United States. So that’s the issue, is that getting it available in Canada has been a struggle. And up until recently, we’ve been having most of our patients who we’ve recommended for this device have their procedure done down in the U.S. And for us, that’s been Detroit,” he said.
But in Kauzen’s case, Steven and his team advocated for this treatment and applied through Health Canada’s Special Access Program.
She was approved and Kauzen because one of the first patients in Canada to receive this device.
When Kauzen heard about the procedure she said she was looking forward to it, and that she needed to start planning for her future.
“I was scared, definitely being that it was going to be one of the first in Canada, but I needed a plan for my future. I can’t keep taking medications that aren’t going to work,” she said.
She underwent the RNS procedure in July 2024.
Image of Christine Kauzen after the surgery.
London Health Sciences Centre
The surgery was a success, Kauzen said. Aside from some initial pain, she has only experienced one seizure since the procedure, which was a brief loss of awareness seizure that occurred in the hospital after surgery.
Other than that, she has remained seizure-free.
“I very much got my life back. I am planning things for my future, whereas before I would have never actually made plans, even for a couple of weeks at a time. It just wasn’t worth it because I knew I would have seizures and I would be too afraid of losing my memory,” she said.
“And now I’m actually making plans to go and have fun.”
Steven said he couldn’t be happier with Kauzen’s recovery. He added that the next step is for surgeons and neurologists involved in the process to work with the company to secure Health Canada approval.
“That would be a big step forward. And then we could speak again about getting funding from the government, but the first step is to get it approved in Canada,” he said.