Wietske Flor spends every day wondering when he will hit the next seizure.
Sometimes seizures occur several times a day. Sometimes, the days will go without one, leaving her on guard and waiting for the inevitable.
It means that Chilliwack’s mother, 41, cannot be left alone to take care of her three children, from nine to 13 years. He cannot drive, although before this disease, he used to fly airplanes, having completed his training as a commercial pilot before deciding to become a midwife.
“I’m almost in a shell,” Wietske said from his home in Chilliwack.
Simple tasks such as kitchen and gardening are often too overwhelming. Seizures leave her so tired that she often strange her children’s school events.
“It has been completely weakening for us,” said her husband, Gabor Flor. “For most of the four years, he could not work properly.”
Wietske has been waiting for since December 2023 a neurological procedure that can give doctors clues about which parts of their brain trigger seizures.
“The waiting time is so long and uncertain, which makes everything in life uncertain,” Wietske said.
The procedure is called intracranial EEG (IEEG). The electrodes are placed at the bottom of the brain to identify the source of seizures and help determine if brain surgery can cause them to stop.
She had already waited for more than a year to obtain extended EEG monitoring, a less invasive procedure that places electrodes outside the brain. But in November 2023, doctors told him the most invasive procedure that was needed before they could proceed with surgery.
VGH ONLY HOSPITAL THAT YOU CAN’S DO THE PROCEDURE
The IEEG can only be done at the Epilepsy Clinic of the General Hospital of Vancouver. And only two procedures can occur to the month due to the complexity of the procedure and the extensive clinical support that is neededAccording to Vancouver Coastal Health.
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Sometimes, Wietske’s convulsions are so severe that her husband calls an ambulance to take her to Chilliwack’s general hospital. Most of the time, they have told him that there is nothing that medical staff can do. Then they send her back home to wait for the next.
Estimate last year, Wietske had about 100 seizures and ended up 10 times.
Gabor describes it like this: “Try to imagine, someone gives you a necklace where a bomb can leave. And they send you home, and they tell you: ‘Ok, in two minutes, if you start marking, you must respond in two or three minutes.”
The medication that Wietske is in has not been able to stop the seizures, which have been happening since 2021. It was then that Wietske contracted viral encephalitis, a condition that kept it in intensive care for three weeks and damaged the left side of its hippocampus.
No one from the health authority was available for an interview, but said in a statement that “financing is not the determining factor” by limiting procedures to two per month.
“The planning of an IEEG procedure is multifaceted and includes specialized doctors, personnel and equipment that must align with the hospital’s ability to provide enveloping support 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 that their brain activity can be monitored.
The health authority said that the waiting time for an IEEG is about 17 months, and there are about 30 people on the waiting list.
A woman from Nanaimo is criticizing the BC Foroners’ service for not performing an autopsy in her husband. Anastassia Waddell says that her husband, Drew Madsen, an epilepsy patient, died suddenly and unexpectedly while sleeping in March. As Jon Hernández of CBC reports, he requested a research autopsy so that others could learn from the cause of his death.
Long common waiting times throughout Canada, says the doctor
Dr. Lysa Lomax, neurologist and epileptologist, said the waiting time does not surprise her.
“In all Canada, it is not uncommon to have waiting lists of one to three years and, sometimes, up to four years,” said Lomax, elected president of the Canadian League against epilepsy and the director of the Epilepsy Monitoring Unit at the Kingston Health Sciences Center at the University of Queens in Ontario.
Lomax said it is because epilepsy requires specialized neurologists, specialized neurosurgeons, trained nursing staff and space in bed.
“So it is not a surprise for me to be so long, and it is so long in Canada.”
People with epilepsy also run the risk of dying due to sudden and unexpected death, he said.
Lomax said that faster people can obtain epilepsy surgery, which can cure seizures between 25 and 50 percent of cases, the more it limits the load of the medical care system, through reduced visits from the emergency room.
The couple emphasized that Wietske has received high quality attention from the VGH neurology team, but the wait and uncertainty is unbearable.
Doctors have told the couple that they also feel “frustrated that there are not enough resources to treat all people with epilepsy.”
Wietske said no one has been able to tell him where they are on the waiting list.
VCH said the waiting times for the IEEG procedure have improved since 2021, which is when it began to be offered at the Epilepsy Clinic. Before that, many patients had to look for treatment outside BC
A’aliyah Warbus, the conservative MLA for BC for Chilliwack Cultus Lake, raised the case of its constituent in the legislature earlier this month, which is the month of awareness of epilepsy.
“For those who live with epilepsy, every day without adequate care is a day of uncertainty, struggle and risk,” he said. “Its history is a reminder of how vital it is to eliminate barriers for essential tests and medications so that no one is without the care they need.”
The Minister of Health, Josie Osborne, says he understands the frustration of the couple.
“I can 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 is a very complex condition that requires a team of specialists with the right team and the alignment with the openings in the hospital.”
She cited the efforts of the province to train and attract more medical care workers, even following credentials for doctors trained in the US, including specialists and neurosurgeons.
Meanwhile, Wietske and her husband say they feel they have let them use for themselves while waiting with little support.
