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

Wietske Flor is a 41-year-old mother of three who lives in Chilliwack, British Columbia. Every day, she lives with the constant fear of when the next seizure will hit. Sometimes, these seizures occur multiple times a day, while other times, days will pass without one. This unpredictable pattern leaves her on edge, always waiting for the inevitable.

Due to her condition, Wietske cannot be left alone to care for her children, who are aged nine to 13. She is unable to drive, despite having completed her training as a commercial pilot before deciding to become a midwife. Simple tasks like cooking and gardening have become overwhelming for her, and she often misses her kids’ school events due to the exhaustion caused by the seizures.

Her husband, Gabor Flor, describes the situation as utterly debilitating. For the past four years, Wietske has struggled to function properly, leaving the family under constant stress. The couple feels like they are living with a ticking bomb, never knowing when it might go off.

Wietske has been waiting since December 2023 for a neurological procedure called an Intracranial EEG (iEEG), which could provide insight into the source of her seizures. This procedure, which involves placing electrodes deep inside the brain, can help determine if brain surgery is a viable option to stop the seizures. Unfortunately, the wait time for this procedure is long and uncertain, adding to the family’s anxiety.

The iEEG can only be performed at Vancouver General Hospital’s epilepsy clinic, where only two procedures can be conducted each month due to the complexity of the process. Wietske’s seizures are sometimes severe enough to warrant a trip to the emergency room, but often medical staff can do little to help. Her medication has not been effective in stopping the seizures, which have been ongoing since she contracted viral encephalitis in 2021.

The long wait times for specialized epilepsy procedures are not unique to Wietske’s case. Dr. Lysa Lomax, a neurologist and epileptologist, explains that wait lists for epilepsy surgeries can range from one to four years across Canada. The specialized nature of epilepsy care requires trained professionals and specific equipment, contributing to the lengthy wait times.

Despite receiving high-quality care from the neurology team at VGH, Wietske and Gabor are frustrated by the uncertainty surrounding her condition. The lack of resources to treat all patients with epilepsy adds to their distress. Wietske has no way of knowing where she stands on the waitlist for the iEEG procedure, adding to the feeling of helplessness.

In the meantime, the family is left to navigate the challenges of living with epilepsy on their own. They feel unsupported and isolated as they wait for answers and solutions to Wietske’s condition. Health Minister Josie Osborne acknowledges the frustration felt by families in similar situations and highlights the province’s efforts to train and attract more healthcare workers to address the growing demand for specialized care.

As Wietske and her family continue to wait for the life-changing procedure that could provide relief from her seizures, they hope for a resolution that will allow her to reclaim her life and independence. In the midst of uncertainty and long wait times, they remain resilient and hopeful for a brighter future.