The chances of being diagnosed with a symptomatic pineal gland cyst are similar to winning a small lottery — and in Alberta you might need that jackpot just to pay for the surgery.
It’s a tale of benign agony for the unfortunate few to be diagnosed in this province: Excruciating headaches, vision loss, muscle spasms, fatigue, anxiety and extreme mood swings, to name some of the symptoms.
But it won’t kill you.
That, coupled with the fact no doctor in Canada apparently feels comfortable removing a benign cyst from deep within in the brain, means Alberta doesn’t consider pineal gland cysts a big deal.
Or at least, the province won’t typically pay for the surgery.
Patients in Alberta can either endure a life of painful, non-malignant misery, or they can somehow raise the quarter-million dollars needed to pay a U.S. specialist.
For the unlucky few, Alberta’s default funding decision has been to rule the cyst-removal surgery elective, putting it in the same up-to-you category as a boob job or hip replacement.
That means the $250,000 bill is the patient’s problem.
Meet Mikayla Curran.
Eleven years old, Mikayla has repeated told her parents she wants to die. “To go and be with grandma,” in her words.
One year ago, the Wetaskawin honour student was athletically and socially active, keen on swim club, camping, boating, books, horses and of course, hanging out with her sister and friends.
But then the headaches started, a daily throbbing similar in intensity to a migraine.
Some time later, as doctors struggled to find a cause, Mikayla went temporarily blind, and an emergency MRI located a small cyst in her brain.
For her fretting parents, Sheldon and Angela Curran, the initial good news about the cyst being cancer-free was quickly countered by the revelation their daughter was very sick and there was no help available in Alberta.
Mikayla no longer swims, plays or does much of anything. She’s tired, sore and miserable, and at 11-years-old, ready to give up.
“How can it be elective surgery when something causes this kind of treachery and upheaval in your life?” says Sheldon.
“As parents, you accept there will be a little bit of suffering in life, but not when it comes to a child being sick like this, and having to listen to your child not wanting to live.”
The Currans aren’t waiting. They’ve already started to raise the $210,000 needed to fly Mikayla to a Texas neurosurgeon in late June, having been told by a string of Canadian specialists that the relatively primitive technique available here is too dangerous.
There’s a slim chance Alberta might buck its own trend, and fund the surgery — but that appeal process could take months, if not years, and for parents watching their daughter in immense pain, the wait is not worth it.
“She’s suffering,” says Angela, a registered nurse who works for the province.
If it means re-mortgaging the house, or selling everything they own, so be it.
“One way or another, she’s having that surgery,” says Sheldon.
Shane Wambolt’s parents felt the same way in 2010, when the Fort McMurray man was left unable to work due to migraines, tremors, blackouts and a loss of muscle control — all thanks to the same cyst now wreaking havoc in Mikayla’s life.
Wambolt’s parents re-mortgaged their home on Nova Scotia, leaving them near bankrupt, and that cash, along with a fundraising campaign in Fort Mac, covered the $250,000 surgery tab at a California clinic.
In vain, he asked the province for help, and continues to do so: “Requested and denied five times,” said Wambolt.
He says Alberta Health refuses to pay, saying the procedure wasn’t necessary.
“They called it elective surgery, but pre-surgery, my life was terrible, I was starting to go blind and getting paralysis,” said Wambolt.
“Now I’m back to work and supporting my family and living a normal life.”
At least two other Alberta cases of symptomatic pineal cysts have been reported with similar facts: a $200K+ bill for American care, with the province declining funding.
But then there’s the case of Airdrie teen Dylan Nielsen, 17, who had the same surgery at the same clinic as Wambolt in 2009, yet somehow ended up being reimbursed.
It’s a precedent Wildrose MLA Rob Anderson credits to publicity and opposition badgering of then-Health Minister Gene Zwozdesky, who apparently met with the Nielsen family and then gave the order for their six-figure bill to be paid.
Anderson says he’s ready to take up the fight again, on behalf of Mikayla.
“It took a lot of doing, and we got a lot of media attention — and to Zwozdesky’s credit, he did eventually come around,” said Anderson.
“If this is the same situation, we are absolutely ready to bring this up again.”
Endless pain â€” parents face $210,000 bill to treat their little girlâ€™s agony | P (external - login to view)