Canadians with brain cysts forced to get surgery in U.S.

Doctor examing an x-ray.
Doctor examing an x-ray. Photo from iStock/Getty Images.

Apparently, having a cyst in your brain that is causing you severe problems is not serious enough to warrant surgery in Canada.

Such is the case of Tom Kettering, who after 10 years of living with a debilitating cyst in his brain is finally getting surgery…just not in Canada. Kettering sold his business, and everything else he had in order to afford the pricey surgery in the United States.

There is little dispute that the medical system in Canada has failed Kettering. They wouldn’t even schedule him for an MRI, and he and his wife had to pay privately to have two MRI’s done.

Doctors in B.C. still refused to give Kettering the go-ahead to have the surgery. They believed it was unnecessary and that it wasn’t the cyst in his brain that was causing him great pain and made him unable to continue working or living his life.

When Kettering asked what they thought was causing him great pain in his head, one neurologist responded: “I have no idea.”

Kettering has been suffering with so much pain that he couldn’t take it anymore. Kettering told CBC’s Go Public: "It's to the point where I start vomiting from the pain. It feels like a slow death. I keep waiting and waiting and it just gets worse and worse.”

B.C. neurosurgeon and head of Neurosurgery at Vancouver General Hospital, Dr. Brian Toyota, believes that about 700,000 Canadian have pineal cysts in their brain, but most have no symptoms. While Dr. Toyota says that surgeons do operate on these brain cysts in Canada, they have to show to have caused the person severe problems.

It appears having no quality of life and suffering from debilitating pain isn’t severe enough.

Over a dozen Canadians with severe symptoms had to look to the U.S. for relief-giving surgery, because Canada refused them. Such is also the case of Calgary university student Kristina Waldmann, whose parents had to re-mortgage their house and hold fundraisers to pay for her surgery in Texas.

Like Kettering, Waldmann was suffering from severe headaches, nausea, vomiting and more. In fact, the cyst in her head was so debilitating that she couldn’t function and had to stop going to school.

Her case also seems to have been deemed not “severe” enough.

Waldmann’s surgery was done last March and she said she feels a lot better: “Months later, I have my life back.”

Apparently, all of the Canadians who got this surgery no longer have symptoms. In fact, the medical journal of the American Association of Neurological Surgeons has found that over a year after having this surgery, 94% of people feel better and some were even completely pain-free.

Maybe we need to re-evaluate what “severe health problems” means in Canada. Or maybe the problems go deeper right into our healthcare system.

Kettering never even came close to seeing a neurosurgeon, despite a problem this serious, and it took him over two years just to get an appointment with a neurologist.

Dr. Toyota told CBC’s Go Public: “I do think Canada and the provinces could do well by [having] more neurosurgeons.”

The second problem seems to be that Canadian doctors don’t seem to take pineal gland cysts very seriously, because they do not require urgent surgery. This is what American doctor; Dr. Hrayr Shahinian believes, who will be performing brain surgery on Kettering on November 17 in Los Angeles.

Most of the people who have undergone the surgery in the U.S. are now trying to get the money back from their provincial governments, because it has severely crippled their wallets. This type of surgery costs from between $100,000 - $200,000.

The only problem: provinces like the B.C. government will only pay for the cost of surgery - even if it is out of the country - if it is recommended by a Canadian neurosurgeon.

That is a hard barrier to overcome, given that quite a few of these patients can’t even get an appointment with a neurosurgeon, despite the severity of their cases.

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