‘Utterly Debilitating’: Chilliwack Mom Faces 17-Month Wait for Life-Changing Epilepsy Procedure

Every morning, Wietske Flor wakes up wondering when the next seizure will strike.

The 41-year-old Chilliwack mother of three can no longer drive, cook, or garden — and she often misses her kids’ school events due to the physical toll of her condition. Once a trained commercial pilot and midwife, she’s now mostly confined to home, while her husband Gabor juggles caregiving and full-time parenting.

“I am almost in a shell,” Wietske said.

Wietske is waiting for a specialized epilepsy procedure called an intracranial EEG (iEEG), where electrodes are implanted deep in the brain to help determine whether brain surgery could stop her seizures.

Only 2 Procedures a Month

The procedure is only available at Vancouver General Hospital, and only two patients a month can receive it. The hospital says that’s due to the complexity of the procedure and the intensive monitoring required afterward.

That puts the average wait time at 17 months.

“It just seems so hopeless. What’s going to happen to me?” Wietske said.

The wait began in December 2023, after doctors told her that her previous EEG — which monitored brain activity from outside her skull — wasn’t enough to identify the seizure’s origin. Since then, she’s endured roughly 100 seizures and 10 ER visits, according to her husband.

“Imagine someone gives you a necklace with a bomb that might go off,” Gabor said. “They send you home and say, ‘If it starts ticking, you have two minutes to act.’ That’s what we live with.”

A National Problem, Doctors Say

Neurologist Dr. Lysa Lomax, president-elect of the Canadian League Against Epilepsy, says Wietske’s case is unfortunately not unusual.

“Across Canada, it’s not uncommon to see wait lists of one to three years, sometimes up to four,” said Lomax.

That’s because iEEG procedures require a highly specialized team: neurosurgeons, neurologists, nurses, and monitoring staff — all in short supply. Despite the delays, Lomax says the procedure is worth it: epilepsy surgery can cure seizures in 25 to 50 per cent of cases.

And the sooner it’s done, the less pressure on the health-care system from frequent ER visits and ambulance calls.

A System with Limits

Vancouver Coastal Health (VCH) confirmed the 17-month average wait and said there are around 30 patients on the wait list. A spokesperson emphasized that the limitation isn’t money, but logistics — aligning staff, equipment, and hospital capacity for such a complex procedure, which involves a three-hour surgery and a two-week stay for monitoring.

“Planning for an iEEG is multifaceted,” said VCH in a statement. “It includes specialty physicians, staffing and equipment that must align with hospital capacity.”

VCH also said that before 2021, many patients had to leave the province to access this care — so the creation of a local program has already improved access.

Still, Wietske says she hasn’t been told where she is on the list, which adds to her distress.

‘Utterly Debilitating’

Wietske’s seizures began after a viral brain infection (encephalitis) in 2021 that left lasting damage to part of her brain. Despite multiple medications, the seizures haven’t stopped.

“For most of the last four years, she hasn’t been able to function properly,” Gabor said.

He says they feel abandoned — caught in a bureaucratic system with few supports and no clear timeline.

A Political Push for Action

Chilliwack MLA A’aliyah Warbus raised Wietske’s case in the B.C. legislature earlier this month, noting it’s Epilepsy Awareness Month.

“Her story is a reminder of how vital it is to remove barriers to essential testing and medication,” Warbus said.

Health Minister Josie Osborne said she understands the frustration and pointed to the government’s efforts to recruit more specialists and fast-track licensing for U.S.-trained doctors.

“This is a very complex condition that requires a team of specialists,” Osborne said. “I can well imagine how frustrating it is for people waiting.”

A Broken System?

Though the Flors say the care Wietske has received at VGH has been compassionate and professional, they — and her doctors — say the wait is far too long.

“The neurologists told us they’re frustrated too,” Gabor said. “There just aren’t enough resources.”

As Wietske continues to wait, each seizure brings new exhaustion — and another day of missed memories with her children.

“We’re trying to survive. But we need help.”