A local man is awaiting brain surgery in Los Angeles with a mixture of anticipation and dread.
Tom and his wife Christina are hoping that a quarter-million-dollar procedure will put a stop to the blinding headaches that have plagued Tom for the past 20 years.
To this end they have sold off their business interests and heavy equipment, put their home up for sale and taken out a major bank loan. They have also been supported by donations of almost $40,000 to a crowd funding website in Tom’s name.
This is because the procedure is not funded by the Canadian medical plan and in any event there isn’t a neurosurgeon in the country who performs this surgical procedure.
The couple even had to pay out of their own pocket for an MRI at the private False Creek medical facility, due to the waiting list. That scan found what they believe to be the cause of Tom’s migraines, a cystic tumor on his pineal gland deep inside his brain.
“I haven’t been able to work at all for the past three years,” Tom told The Star on Friday.
“I’ve been prescribed the highest narcotics but it doesn’t faze my headaches.”
Christina said she was grateful in a sense that narcotics didn’t work as she didn’t want addictions to become a problem either.
However, she said the symptoms of “shaking, twitching, sometimes his face going numb and slurring” have become more than anyone can cope with.
“Tom has suffered with migraines for most of his life but they have become increasingly worse over the past 10 years and are now daily and completely debilitating,” said Christina.
“Tom says all the time that he feels he is living a slow death. The constant pain has taken away any quality of life possible and there are many days that the thought of not living at all would be easier than him having to live with this pain. So for us, as frustrating as it is that our medical system will not cover the cost of surgery, not getting it done is just not an option. There is too much life left to live to watch Tom suffer like this anymore.
“So surgery is booked for November and we will just have to deal with the financial consequences of it as best we can. I would do and give up everything to see him healthy and happy again,” said Christina.
For the past six years the couple have tried different therapies and clinics, including the Mayo Clinic, without success.
“Thousands and thousands of dollars were spent on naturopath, chiro, massage, acupuncture, botox, hyperbaric chamber treatments, myofascial release treatments, trigger point injections… you name it we tried it,” said Christina.
Then further research by the couple led to a Calgary university student, Kristina Waldmann, who suffered identical symptoms as Tom does, but has found the answer.
“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 told CBC News recently.
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.
Armed with this information Tom and Christina explored their options and found that there were only two neurosurgeons in the U.S. who enter the skull and remove the cysts. And the success rate was high. More than a dozen Canadians have had this procedure performed and all of them no longer suffer from the symptoms.
“We have no other choice,” said Christina. “We had to raise the money to do this, how could we not try?”
B.C.’s Ministry of Health will cover the cost of the surgery — in or out of the country — but only if it is recommended by a Canadian neurosurgeon.
However, 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.
Their MLA Darryl Plecas visited the couple on Thursday and said he would try to make a case for coverage by the B.C. Medical Services Plan in Victoria, but could make no promises.
“I appreciate that he’s going to go to bat for us,” said Christina.
Dr. Hrayr Shahinian will perform Kettering’s surgery on Nov. 17 in Los Angeles at the Mission Community Hospital.
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.
Donations to assist in the couple’s expenses can be made at the website: https://www.gofundme.com/yv64gdn8