After suffering debilitating headaches and pain for 10 years, a B.C. man desperate for relief is selling everything he owns to pay for brain surgery in the U.S. because he says no doctor in Canada will perform the surgery he needs to remove a cyst.
"It's pretty much hell. It's pain everywhere. Your face goes numb," Tom Kettering told Go Public.
The Abbotsford man spends most of his time in a dark bedroom with sunglasses on, hoping the pain in his head won't get worse. He's had to stop working, sell his business, and rarely goes outside.
"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," he says.
Over the past decade, he has seen many doctors and been prescribed a multitude of medications for what was initially diagnosed as migraine headaches.
He says his headaches don't come and go, but are a constant source of pain.
No help from medical system
Kettering says none of the medications worked and doctors told him an MRI was unnecessary.
He and his wife, Christina Jones, paid for two private MRIs that showed a cyst on the pineal gland in the middle of Kettering's brain.
Doctors told Kettering and his wife the cyst couldn't be causing the pain. They also said surgery to remove the mass was out of the question.
"One doctor said it's not ethical to cut into your head for no reason. I said there is a reason — there are symptoms. It's completely taken away any quality of life. He can't function anymore," Jones said.
"I asked the neurologist in Vancouver, if this is not causing the problem then what is? He said, 'I have no idea.' He said, 'You've tried everything — at this point I don't know what to tell you.'"
Surgery might offer relief
The couple learned there is a surgical option available in the U.S. that has helped others with pineal gland cysts. No Canadian doctor will do the surgery and Canada's health-care system won't pay the $100,000 to $200,000 cost of having the procedure south of the border.
Despite the high cost, Jones says they had no choice but to book the surgery with one of the two American doctors who do it.
"We sold everything we can sell to this point — we've got the house for sale. People are trying to donate, family and friends. It's a huge expense ... but when it comes to quality of life, you can't put money ahead of it," she says.
Student praises surgery
Go Public has found more than a dozen Canadians who were diagnosed with a cyst on their pineal gland and went to the U.S. for surgery. All said they no longer have symptoms. Many are now fighting provincial governments to retroactively pay the cost of their procedures.
Calgary university student Kristina Waldmann is one of them.
"I was in pain all the time, severe headaches all the time, nausea, vomiting, dizziness, visual problems. I had to stop going to school, to work, to my volunteer position. I was stuck at home in pain — not able to do anything," she says.
After four years of trying to go through the Canadian system, her parents re-mortgaged their home and held fundraisers to pay for the procedure in the U.S.
Waldmann's surgery was done at a Texas hospital in March.
"As soon as I woke up, the visual symptoms were gone. Months later, I have my life back," she says.
Access to neurosurgeons part of problem
B.C.'s Ministry of Health told Go Public it will cover the cost of the surgery — in or out of the country — but only if it is recommended by a Canadian neurosurgeon.
Kettering never saw a neurosurgeon. He had to wait two years to see a neurologist and has not been able to get an appointment to see a neurosurgeon.
That may point to a larger problem, according to Dr. Brian Toyota, the head of Neurosurgery at Vancouver General Hospital.
"It's a matter of patients being able to see neurosurgeons. In that way, I do think Canada and the provinces could do well by [having] more neurosurgeons," he said.
"That doesn't mean that more neurosurgeons will take out lesions that they shouldn't, but patients can sit down face to face with someone who's trained to know not only how to take out a lesion in the brain, but when to take it out," he says.
A cyst on the pineal gland can be complex and often requires consultation between neurosurgeons.
Toyota says he can't comment on specific cases or on why some Canadians are forced to go the U.S. and pay a lot of money for surgery, but says the issue is not a failure to correctly diagnose the problem.
He predicts as many as 700,000 Canadians have pineal gland cysts and don't even know it because they have no symptoms. Surgeons here do operate on this type of cyst, but only when it can be proven they are causing severe problems, and he says that is rare.
Canadian system slow to take action
Dr. Hrayr Shahinian will perform Kettering's surgery on Nov. 17 in Los Angeles. He says he's operated on dozens of Canadians since he began offering the surgery in 2007.
He agrees with Canadian doctors that cysts rarely cause problems, but says when they get to certain size — the physical implications are serious.
Shahinian believes patients with pineal gland cysts get left behind by the Canadian medical system because the surgery isn't considered urgent.
"In Canada, they keep taking MRI after MRI after MRI and you see the tumour growing and growing every year and they don't do anything. Then the patients end up coming here and have to fight the system to get their money back," he says.
A study recently published in the medical journal of the American Association of Neurological Surgeons, found more than a year after surgery, 94 per cent of patients who had this kind of cyst were either pain-free or had an improvement in their symptoms.
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