Wietske Flor goes by every single day questioning when the subsequent seizure will hit.
Generally, the seizures occur a number of instances a day. Generally, days will go by with out one, leaving her on guard and ready for the inevitable.
It means the 41-year-old Chilliwack mother cannot be left alone to take care of her three children, aged 9 to 13. She will’t drive — though earlier than this sickness, she used to fly airplanes, having accomplished her coaching as a industrial pilot earlier than deciding to change into a midwife.
“I’m virtually in a shell,” Wietske mentioned from her Chilliwack residence.
Easy duties like cooking and gardening are sometimes too overwhelming. The seizures depart her so drained she usually misses her children’ faculty occasions.
“It has been completely debilitating for us,” mentioned her husband, Gabor Flor. “For many of the 4 years, she hasn’t been in a position to perform correctly.”
Wietske has been ready since December 2023 for a neurological process that would give medical doctors clues as to what components of her mind are triggering the seizures.
“The wait time is so lengthy and unsure, which makes the whole lot in life unsure,” Wietske mentioned.
The process known as an Intracranial EEG (iEEG). Electrodes are positioned deep contained in the mind to pinpoint the supply of seizures and assist decide if mind surgical procedure could make them cease.
She had already waited greater than a yr to get prolonged EEG monitoring, a much less invasive process which locations electrodes on the surface of the mind. However in November 2023, medical doctors informed her the extra invasive process was wanted earlier than they may proceed with surgical procedure.
VGH solely hospital that may carry out process
The iEEG can solely be completed at Vancouver Normal Hospital’s epilepsy clinic. And solely two procedures can occur a month because of the complexity of the process and the intensive medical assist that’s wanted, in accordance with Vancouver Coastal Well being.
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Christine Kauzen is the second Canadian to obtain a cutting-edge neurostimulation system that retains her seizure-free. Kauzen and her neurosurgeon, Dr. David Steven, informed London Morning concerning the cutting-edge remedy and the way it offers life again to these affected by Epilepsy.
Generally, Wietske’s seizures are so extreme, her husband calls an ambulance to take her to Chilliwack Normal Hospital. Most of the time, she’s informed there’s nothing medical employees can do. So she’s despatched again residence to attend for the subsequent one.
He estimates final yr, Wietske had about 100 seizures and ended up in ER 10 instances.
Gabor describes it like this: “Attempt to image, any person offers you a necklace the place a bomb can go off. They usually ship you residence, and so they inform you, ‘OK, in two minutes, if it begins ticking, it is advisable reply in two or three minutes.”
The remedy Wietske is on has not been in a position to cease the seizures, which have been taking place since 2021. That is when Wietske contracted viral encephalitis, a situation which saved her in intensive care for 3 weeks and broken the left aspect of her hippocampus.
Nobody from the well being authority was made obtainable for an interview, but it surely mentioned in an announcement that “funding isn’t the figuring out issue” in limiting the procedures to 2 a month.
“Planning for an iEEG process is multifaceted and contains specialty physicians, staffing, and tools that should align with hospital capability to supply wrap-around helps for the affected person earlier than and after the iEEG process,” the well being authority informed CBC Information.
The process takes three hours, after which the affected person is admitted for 2 weeks so their mind exercise may be monitored.
The well being authority mentioned the wait time for an iEEG is about 17 months, and there are about 30 individuals on the wait listing.
A Nanaimo girl is criticizing the B.C. Coroners Service for not performing an post-mortem on her husband. Anastassia Waddell says her husband, Drew Madsen, an epilepsy affected person, died out of the blue and unexpectedly in his sleep in March. As CBC’s Jon Hernandez stories, she requested an investigative post-mortem so others may study from the reason for his loss of life.
Lengthy wait instances frequent Canada-wide, physician says
Dr. Lysa Lomax, a neurologist and epileptologist, mentioned that wait time doesn’t shock her.
“Throughout Canada, it’s not unusual to have wait lists of 1 to a few years and typically so long as 4 years,” mentioned Lomax, the president-elect of the Canadian League Towards Epilepsy and the epilepsy monitoring unit director at Kingston Well being Sciences Centre in Queens College in Ontario.
Lomax mentioned that is as a result of epilepsy requires specialised neurologists, specialised neurosurgeons, educated nursing employees and mattress house.
“So it isn’t a shock to me that it is so lengthy, and it is that lengthy throughout Canada.”
Individuals with epilepsy are additionally susceptible to dying from sudden, surprising loss of life, she mentioned.
Lomax mentioned the quicker individuals can get epilepsy surgical procedure — which might remedy the seizures in between 25 to 50 per cent of instances— the extra it limits the burden on the health-care system, by the use of diminished emergency room visits.
The couple pressured Wietske has acquired high-quality care from the neurology group at VGH, but it surely’s the wait and uncertainty that is insufferable.
Docs have informed the couple additionally they really feel “pissed off that there aren’t sufficient sources to deal with all of the individuals with epilepsy.”
Wietske mentioned nobody has been in a position to inform her the place they’re on the wait listing.
VCH mentioned wait instances for the iEEG process have improved since 2021, which is when it began being supplied on the Epilepsy Clinic. Earlier than that, many sufferers needed to search remedy outdoors of B.C.
A’aliyah Warbus, the B.C. Conservative MLA for Chilliwack Cultus Lake, raised her constituent’s case within the legislature earlier this month, which is Epilepsy Consciousness Month.
“For these dwelling with epilepsy, every single day with out correct care is a day of uncertainty, wrestle and danger,” she mentioned. “Her story is a reminder of how important it’s to take away boundaries to important testing and drugs so nobody is left with out the care they want.”
Well being Minister Josie Osborne says she understands the couple’s frustration.
“I can properly think about how irritating it’s for individuals to have to attend for any kind of specialised surgical procedure or operation. That is an instance of that. It is a very advanced situation that requires a group of specialists with the appropriate tools and aligning with openings within the hospital.”
She cited the province’s efforts to coach and appeal to extra health-care employees, together with by fast-tracking the credentials for U.S.-trained medical doctors — together with specialists and neurosurgeons.
Within the meantime, Wietske and her husband say they really feel like they have been left to fend for themselves whereas they wait with little assist.
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