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

Wietske Flor goes done each time wondering erstwhile the adjacent seizure volition hit. 

Sometimes, the seizures hap aggregate times a day. Sometimes, days volition spell by without one, leaving her connected defender and waiting for the inevitable. 

It means the 41-year-old Chilliwack ma can't beryllium near unsocial to attraction for her 3 kids, aged 9 to 13. She can't thrust — adjacent though earlier this illness, she utilized to alert airplanes, having completed her grooming arsenic a commercialized aviator earlier deciding to go a midwife. 

"I americium astir successful a shell," Wietske said from her Chilliwack home. 

Simple tasks similar cooking and gardening are often excessively overwhelming. The seizures permission her truthful bushed she often misses her kids' schoolhouse events. 

"It's been utterly debilitating for us," said her husband, Gabor Flor. "For astir of the 4 years, she hasn't been capable to relation properly."

The process is called an Intracranial EEG (iEEG). Electrodes are placed heavy wrong the encephalon to pinpoint the root of seizures and assistance find if encephalon country tin marque them stop.

She had already waited much than a twelvemonth to get extended EEG monitoring, a little invasive process which places electrodes connected the extracurricular of the brain. But successful November 2023, doctors told her the much invasive process was needed earlier they could proceed with surgery. 

VGH only infirmary that tin execute procedure

The iEEG tin lone beryllium done astatine Vancouver General Hospital's epilepsy clinic. And lone 2 procedures tin hap a period owed to the complexity of the procedure and the extensive clinical support that is needed, according to Vancouver Coastal Health. 

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Sometimes, Wietske's seizures are truthful severe, her hubby calls an ambulance to instrumentality her to Chilliwack General Hospital. More often than not, she's told there's thing aesculapian unit tin do. So she's sent backmost location to hold for the adjacent one.

He estimates past year, Wietske had astir 100 seizures and ended up successful ER 10 times.

Gabor describes it similar this: "Try to picture, idiosyncratic gives you a necklace wherever a weaponry tin spell off. And they nonstop you home, and they archer you, 'OK, successful 2 minutes, if it starts ticking, you request to respond successful 2 oregon 3 minutes."

The medicine Wietske is connected has not been capable to halt the seizures, which person been happening since 2021. That's erstwhile Wietske contracted viral encephalitis, a information which kept her successful intensive attraction for 3 weeks and damaged the near broadside of her hippocampus.

No 1 from the wellness authorization was made disposable for an interview, but it said successful a connection that "funding is not the determining factor" successful limiting the procedures to 2 a month. 

"Planning for an iEEG process is multifaceted and includes specialty physicians, staffing, and instrumentality that indispensable align with infirmary capableness to supply wrap-around supports for the diligent earlier and aft the iEEG procedure," the wellness authorization told CBC News.

The process takes 3 hours, aft which the diligent is admitted for 2 weeks truthful their encephalon enactment tin beryllium monitored. 

The wellness authorization said the hold clip for an iEEG is astir 17 months, and determination are astir 30 radical connected the hold list.

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Long hold times common Canada-wide, doc says

Dr. Lysa Lomax, a neurologist and epileptologist, said that hold clip does not astonishment her. 

"Across Canada, it is not uncommon to person hold lists of 1 to 3 years and sometimes arsenic agelong arsenic 4 years," said Lomax, the president-elect of the Canadian League Against Epilepsy and the epilepsy monitoring portion manager astatine Kingston Health Sciences Centre successful Queens University successful Ontario.

Lomax said that's due to the fact that epilepsy requires specialized neurologists, specialized neurosurgeons, trained nursing unit and furniture space.

"So it's not a astonishment to maine that it's truthful long, and it's that agelong crossed Canada."

People with epilepsy are besides astatine hazard of dying from sudden, unexpected death, she said. 

Lomax said the faster radical tin get epilepsy country — which tin cure the seizures successful betwixt 25 to 50 per cent of cases— the much it limits the load connected the health-care system, by mode of reduced exigency country visits. 

The mates stressed Wietske has received high-quality attraction from the neurology squad astatine VGH, but it's the hold and uncertainty that's unbearable. 

Doctors person told the mates they besides consciousness "frustrated that determination aren't capable resources to dainty each the radical with epilepsy."

Wietske said nary 1 has been capable to archer her wherever they are connected the hold list.  

VCH said hold times for the iEEG process person improved since 2021, which is erstwhile it started being offered astatine the Epilepsy Clinic. Before that, galore patients had to question attraction extracurricular of B.C. 

A'aliyah Warbus, the B.C. Conservative MLA for Chilliwack Cultus Lake, raised her constituent's lawsuit successful the legislature earlier this month, which is Epilepsy Awareness Month.

"For those surviving with epilepsy, each time without due attraction is simply a time of uncertainty, conflict and risk," she said. "Her communicative is simply a reminder of however captious it is to region barriers to indispensable investigating and medicine truthful nary 1 is near without the attraction they need."

Health Minister Josie Osborne says she understands the couple's frustration.

"I tin good ideate however frustrating it is for radical to person to hold for immoderate benignant of specialized country oregon operation. This is an illustration of that. It's a precise analyzable information that requires a squad of specialists with the close instrumentality and aligning with openings successful the hospital."

She cited the province's efforts to bid and pull much health-care workers, including by fast-tracking the credentials for U.S.-trained doctors — including specialists and neurosurgeons. 

In the meantime, Wietske and her hubby say they consciousness similar they've been near to fend for themselves while they hold with small support.