Face of Nation : After more than a year of waiting to have a brain tumour removed, Jen Bauer says her kids want their mom back.
“The energy levels have been horrific. The migraines have been non-stop. So my personality and everything, it’s all changed,” she said from her home in Swift Current, Sask.
Bauer, 45, first had brain surgery when she was 18. However, part of the tumour was left behind and has since grown back. Bauer said it’s left her suffering epileptic seizures, which have affected her ability to use one of her arms and make her unable to work. The condition also causes halting speech, and the medication she takes in an effort to control the seizures often makes her too tired to keep up with her six children, who range in age from six to 15.
Bauer said she’ll have waited around 18 months by the time she has her operation in August. With average wait times sitting at around two years in Saskatchewan, she said she counts herself lucky.
“I’m so grateful that I’m not the 24-month person. I’m so grateful that my seizures didn’t get to the point where I didn’t wake up that day.”
She said she’s sharing her story in the hope more people will see the need for a dedicated epilepsy unit in Saskatchewan.
“They don’t realize that there’s this huge need and that people’s lives are at risk not having it.”
Currently, Royal University Hospital has two epilepsy beds located on separate floors.
Dr. Jose Tellez, a professor of neurology at the University of Saskatchewan’s College of Medicine, said this causes long waits for telemetry — a process that records where seizures originate in the brain. He described this as a major choke point in the system, as telemetry is the principal test to determine if a patient is a good candidate for surgery.
Tellez said the situation also means patients needing telemetry can find themselves next to people with other conditions who may be in pain or serious distress.
“This is not good, because a patient just comes to record some seizures and if they are seeing these situations it can actually be traumatic.”
He said the Royal University Hospital Foundation has agreed to raise $1.2 million to set up an epilepsy unit, but needs a commitment from the provincial government to fund staffing costs before they can proceed. Tellez said they’d probably need to create one new position.
“We may have to hire a nurse co-ordinator for the unit, but the rest will (likely) be reorganization of the system we have here.”
Tellez said the foundation has had previous success raising money for equipment for the epilepsy program, leaving him hopeful the unit could be running within about a year of getting the go-ahead from the province.
“Not only people, but I really believe that corporations and companies are going to support us. I don’t think it’s going to be a lot of time to fundraise,” he said.
Health Minister Jim Reiter directed the Saskatchewan Health Authority to begin looking into creating an epilepsy unit in May, according to an emailed statement from an SHA spokeswoman. At that time, the ministry also reportedly committed $50,000 in capital funding.
The SHA statement noted consultations with stakeholders are underway, with an update expected this summer.
Representatives from the Ministry of Health did not respond to a request for comment by press time.
