For more than a decade, Sophie Jodouin was a medical mystery. Her violent, repeated epileptic seizures baffled every doctor she met. Finally, two years ago, a team at The Neuro cracked the mystery.
“When Dr. Andrea Bernasconi told me the cause, I said, ‘You’re kidding, right?’” recalls Sophie, 35, a lifelong resident of Ottawa. “For years I was told that I was such a baffling case.”
Her tribulations started at 15 when she had her first tonic-clonic seizures in which muscles at first stiffen and contract and then begin twitching rhythmically.
“My parents didn’t know much about it,” says Sophie. “It was a somewhat stressful and hard time.”
Sophie had to abide by doctors’ orders not to remain in the bathtub by herself or to keep doors closed. Friends could sleep over at her house but she could not sleep at theirs.
“My teenage years were controlled at a stage when I wanted to do different things. I couldn’t get a driver’s licence. When people look at someone with epilepsy, they don’t understand the impact that it has on that person and their families.”
For a few years, medication kept her seizures under control, though occasionally she would experience them.
“I remember one seizure in the middle of the night when I woke up and couldn’t see. It went black for a few seconds and I started screaming.”
Nonetheless, Sophie maintained a positive approach.
“I was ready to fight it. I could get through it. I was never one to lean on someone, so I never needed a support group.”
Sophie’s older sister, who was nine years older, took on a helper’s role.
“She became a very wise second mom to me. She saw it was a serious situation. We weren’t that close because of the age difference but she came to my rescue a couple of times, which brought us closer.”
Sophie went to Carleton University, but decided that the academic pressure was too much. Stress is one factor that can trigger seizures.
“Over the years, I learned to internalize my stress and deal better with it. I’ve learned to know my triggers. If I was in a stressful situation, I could balance it out by doing something for myself, not just focus on the stress.”
Sophie studied public relations at Ontario’s largest French-language college, La Cité Collégiale, an applied arts and technologies college in Ottawa. After a couple of years working for Elections Canada, she began working for a local media monitoring company, which required working long hours that began quite early in the morning.
“That’s when I got quite sick. I had seizures for 140 hours and was hospitalized for two weeks.”
Sophie quit her job and “started from scratch.” But new seizures and spasms were occurring often.
“I went for tests to many clinics but nothing came out of it. When a doctor suggested The Neuro I was very skeptical and close to saying no.”
At The Neuro, Sophie met Dr. Martin Veilleux, head of the clinical epilepsy group.
“It was phenomenal to see the in-and-out activity among the doctors. They came to talk to you and kept you updated.”
Sophie passed almost three weeks in the Epilepsy Monitoring Unit, where patients wear electrodes that transmit data about the electrical activity in their brain 24 hours a day to an electroencephalograph. When necessary, doctors induce seizures in patients to get data, but during Sophie’s stay, this was not needed - she had more than 20 seizures.
“It still wasn’t enough to uncover the cause, so Dr. Veilleux suggested a team at The Neuro. If anyone was going to find it, they would.”
Dr. Andrea Bernasconi proposed making a 3D magnetic resonance scan, which would involve lying inside the scanner without moving. For someone who was prone to unexpected seizures, such a proposition was daunting.
Sophie underwent the scanning procedure and a few days later was invited to a conference room where doctors were looking over the results.
“Dr. Veilleux told me not to be intimidated by all the eyes looking at me. The doctors would just ask questions. As I was talking, I saw them nodding their heads. They’d found something. I tried not to get excited. I’d been waiting for this moment since age 15.”
The culprit was a tiny malformation in the brain at birth.
“For that little thing to be causing so much trouble in my life, it was crazy!” Sophie recalls thinking.
She was so elated that the next day, when a neurosurgeon, Dr. Jeffery Hall, declared there was only a small chance that surgery could correct the malformation, she was fine.
“At least I knew what the problem was.”
The type of surgery that Dr. Hall proposed was a new treatment called thermocoagulation. He warned that the success rate was very low in preventing more seizures and that there was a possibility of damage to healthy parts of the brain, which could cause the loss of cognitive or physical functions.
“I signed off on it knowing the risks,” says Sophie.
In May 2018, Dr. Hall undertook her operation assisted by a neurologist, Dr. Birgit Frauscher, who induced four seizures to determine Sophie’s epileptogenic centre. She was fully awake and felt no pain. After a brief hospital stay, she returned to work a month later. Ten days later, she had a seizure.
In August, after seeing what life could be like seizure free, Sophie asked Dr. Hall to perform another surgery to remove the lesion completely. Dr. Hall went deeper into the brain and was able to remove the entire lesion. However, there was a complication that affected Sophie’s control of her left leg and arm.
“I had to learn to walk again but I felt really good,” says Sophie, who subsequently underwent physiotherapy in Ottawa. “It was a whole new world for me. For years, I was having four or five seizures a night. Now I know what sleep is!”
In December, Sophie started going back to work gradually. Despite physiotherapy, she still has difficulty walking. When needed, her husband helps out.
“He’s been there to hold my hand, and when my leg gets tired, he helps me. I commend him for sticking with a person who’s been in and out of hospitals. If I’d been told that I’d never use my left leg again but could live a normal life, I still would have had the operation.”
Sophie also commends the staff at The Neuro and the surgical team for their expertise, their passion and their devotion to her case.
“Without them, I wouldn’t have my life back.”
Sophie will consult with The Neuro’s doctors to see what more can be done. She remains undaunted and optimistic.
To learn more about Sophie's procedure, read this first-hand account by Dr. Hall: https://www.mcgill.ca/neuro/article/research-stories-stories-about-livin...
