Chilliwack mother enduring multiple seizures faces year-and-a-half wait for epilepsy procedure

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. 

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.