By Chris Adams, February 12 2015 —
Twenty-seven-year-old Kristina Waldmann had to postpone her studies at the University of Calgary after learning of a tumor three-times the size of her pineal gland deep in her brain.
Waldmann worked three jobs, studied full-time at the U of C and volunteered regularly at the Distress Centre before the results of an MRI derailed her life two years ago.
“I’ve had non-stop visual distortions, hearing impairment, headaches everyday, balance issues, vertigo, nausea, dizziness and cognitive problems,” Waldmann said.
She left the U of C in October 2013, a few months before she was scheduled to graduate. She was working on her honours thesis in psychology, studying stigma and mental illness. Plagued by a host of cognitive problems, Waldmann says the pineal cystic tumor has drastically changed her life.
“On the really bad days, I’m just laying down, not being able to sleep and just in a lot of pain. Other than that I live a very low-key life,” Waldmann said.
The type of tumor she has is rare, and proper treatment isn’t available in Alberta. Alberta Health Services considers her surgery elective so they won’t cover it. Many doctors in the province don’t believe the tumor causes Kristina’s symptoms, so she and her family looked elsewhere for answers.
There are only a handful of surgeons in the world who can remove pineal cysts safely. The Waldmanns decided to head south to see a specialist in Houston, Texas.
Waldmann said the techniques neurosurgeons use to remove pineal cysts in Canada are risky.
“In the States and Australia, they’ve started to use keyhole procedures, so that’s part of the discussion. Part of it is that they don’t have any clinical management in Canada,” Waldmann said.
Waldmann wasn’t able to get coverage for the surgery she needs. The Out-of-Country Health Services Committee in Alberta rejected Waldmann’s request for coverage, along with several requests from other Albertans with pineal cysts.
Advanced imaging techniques have shown that it’s possible for people to have small pineal cysts and not experience symptoms, something Waldmann suspects is keeping the surgery elective.
In a statement released to Global News, Alberta Health Services spokesperson Tim Wilson said doctors follow “specific standards of care” before determining whether surgery is necessary for patients with pineal cysts.
“These standards require there to be clear medical evidence that the cyst is causing a patient serious health issues because of the high risks associated with the procedure. Headaches or psychological symptoms are not considered indications for surgery,” Wilson said.
Of the multiple patients with pineal cysts in Alberta, only one received coverage to go abroad for surgery. Kristina’s father, Chris Waldmann, said Alberta Health Services doesn’t consider patients’ quality of life, but end of life. He added that the uncertainty surrounding the pineal cyst fuels inaction.
“There seems to be a culture [that says] ‘we’re not sure, so we’re going to do nothing,’” he said.
Waldmann said her physician felt powerless trying to get her request approved.
“She said that everybody has had the same experience. You don’t get that definitive “no” because they don’t give you the opportunity. When my general practitioner tried to get a consultation with a neurosurgeon, they closed my case. They said everything’s fine. She had to fight with them to re-open it just to get another MRI,” Waldmann said.
Waldmann’s neurologist had her take anti-seizure medication to mitigate her symptoms, but they didn’t help. Her tumor is slow-growing, meaning it likely isn’t cancerous. But that also means it’s unresponsive to radiation or chemotherapy, making surgery the only option.
Her family started an online fundraising campaign to raise money for the surgery. They hope to raise $90,000 before the end of April. Her parents mortgaged their house to help pay for the surgery.
Her surgery date is March 18, but she has to be in Houston until April 3. As of Wednesday, Feb. 11, the Waldmann’s have raised over $18,000. You can help fund Waldmann’s surgery and recovery by visiting letshelpkristina.com.