Chilliwack mother enduring multiple seizures faces year-and-a-half wait for epilepsy procedure
Wietske Flor is waiting for a neurological procedure. VGH can only do 2 a month
Wietske Flor goes through every day wondering when the next seizure will hit.
Sometimes, the seizures happen multiple times a day. Sometimes, days will go by without one, leaving her on guard and waiting for the inevitable.
It means the 41-year-old Chilliwack mom can't be left alone to care for her three kids, aged nine to 13. She can't drive — even though before this illness, she used to fly airplanes, having completed her training as a commercial pilot before deciding to become a midwife.
"I am almost in a shell," Wietske said from her Chilliwack home.
Simple tasks like cooking and gardening are often too overwhelming. The seizures leave her so tired she often misses her kids' school events.
"It's been utterly debilitating for us," said her husband, Gabor Flor. "For most of the four years, she hasn't been able to function properly."
Wietske has been waiting since December 2023 for a neurological procedure that could give doctors clues as to what parts of her brain are triggering the seizures.
"The wait time is so long and uncertain, which makes everything in life uncertain," Wietske said.
The procedure is called an Intracranial EEG (iEEG). Electrodes are placed deep inside the brain to pinpoint the source of seizures and help determine if brain surgery can make them stop.
She had already waited more than a year to get extended EEG monitoring, a less invasive procedure which places electrodes on the outside of the brain. But in November 2023, doctors told her the more invasive procedure was needed before they could proceed with surgery.
VGH only hospital that can perform procedure
The iEEG can only be done at Vancouver General Hospital's epilepsy clinic. And only two procedures can happen a month due to the complexity of the procedure and the extensive clinical support that is needed, according to Vancouver Coastal Health.
Sometimes, Wietske's seizures are so severe, her husband calls an ambulance to take her to Chilliwack General Hospital. More often than not, she's told there's nothing medical staff can do. So she's sent back home to wait for the next one.
He estimates last year, Wietske had about 100 seizures and ended up in ER 10 times.
Gabor describes it like this: "Try to picture, somebody gives you a necklace where a bomb can go off. And they send you home, and they tell you, 'OK, in two minutes, if it starts ticking, you need to respond in two or three minutes."
The medication Wietske is on has not been able to stop the seizures, which have been happening since 2021. That's when Wietske contracted viral encephalitis, a condition which kept her in intensive care for three weeks and damaged the left side of her hippocampus.
No one from the health authority was made available for an interview, but it said in a statement that "funding is not the determining factor" in limiting the procedures to two a month.
"Planning for an iEEG procedure is multifaceted and includes specialty physicians, staffing, and equipment that must align with hospital capacity to provide wrap-around supports for the patient before and after the iEEG procedure," the health authority told CBC News.
The procedure takes three hours, after which the patient is admitted for two weeks so their brain activity can be monitored.
The health authority said the wait time for an iEEG is about 17 months, and there are about 30 people on the wait list.
Long wait times common Canada-wide, doctor says
Dr. Lysa Lomax, a neurologist and epileptologist, said that wait time does not surprise her.
"Across Canada, it is not uncommon to have wait lists of one to three years and sometimes as long as four years," said Lomax, the president-elect of the Canadian League Against Epilepsy and the epilepsy monitoring unit director at Kingston Health Sciences Centre in Queen's University in Ontario.
Lomax said that's because epilepsy requires specialized neurologists, specialized neurosurgeons, trained nursing staff and bed space.
"So it's not a surprise to me that it's so long, and it's that long across Canada."
People with epilepsy are also at risk of dying from sudden, unexpected death, she said.
Lomax said the faster people can get epilepsy surgery — which can cure the seizures in between 25 to 50 per cent of cases— the more it limits the burden on the health-care system, by way of reduced emergency room visits.
The couple stressed Wietske has received high-quality care from the neurology team at VGH, but it's the wait and uncertainty that's unbearable.
Doctors have told the couple they also feel "frustrated that there aren't enough resources to treat all the people with epilepsy."
Wietske said no one has been able to tell her where they are on the wait list.
VCH said wait times for the iEEG procedure have improved since 2021, which is when it started being offered at the Epilepsy Clinic. Before that, many patients had to seek treatment outside of B.C.
A'aliyah Warbus, the B.C. Conservative MLA for Chilliwack Cultus Lake, raised her constituent's case in the legislature earlier this month, which is Epilepsy Awareness Month.
"For those living with epilepsy, every day without proper care is a day of uncertainty, struggle and risk," she said. "Her story is a reminder of how vital it is to remove barriers to essential testing and medication so no one is left without the care they need."
Health Minister Josie Osborne says she understands the couple's frustration.
"I can well imagine how frustrating it is for people to have to wait for any type of specialized surgery or operation. This is an example of that. It's a very complex condition that requires a team of specialists with the right equipment and aligning with openings in the hospital."
She cited the province's efforts to train and attract more health-care workers, including by fast-tracking the credentials for U.S.-trained doctors — including specialists and neurosurgeons.
In the meantime, Wietske and her husband say they feel like they've been left to fend for themselves while they wait with little support.
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