Manitoba woman with pineal cyst desperate for brain surgery in the U.S.
Published Wednesday, November 18, 2015 4:45PM CST Last Updated Wednesday, November 18, 2015 7:17PM CST
A Manitoba woman is desperate to be approved for a rare surgery to remove a tumour in her brain.
In 2004, doctors discovered a pineal cyst deep inside Mandi Hein's brain.
Hein and her husband, Dwayne, are convinced the 1.5 centimetre tumour is the source of Hein's agonizing headaches, vertigo and, at times, slurred speech.
"I'm taken from my kids. The pain is horrendous. It affects my relationship with the children,” said Hein from her home in Shilo, Manitoba.
The Heins said the symptoms keep getting worse and has impacted her mobility; she no longer drives and rarely leaves the house. Hein takes morphine, codeine and valium to numb the pain.
The couple said Manitoba neurologists told them there is no proven link between her tumour and the suffering.
"Essentially, it's like a marble inside your brain. You can't have a mass that large in your brain and say it’s not going to be causing pressure, causing you problems. It just makes sense," said Dwayne Hein.
Frustrated Canadian families raise money for U.S. surgery
Mandi Hein is one of three Canadians diagnosed with pineal cysts who recently came forward to CTV with their stories of severe pain. They're frustrated with doctors who won't recommend the cysts be removed.
Families are raising money to have the cysts removed in the United States.
Tom Kettering lives with constant blinding headaches. In November 2015, the Abbotsford B.C. man and his wife travelled to Los Angeles to have his pineal cyst removed.
They raised money and took out a loan for the $250,000 procedure.
"Why do I pay taxes? It's a joke," said Kettering.
"You see the success rate from other people and think, how do you not try?” said his wife, Christina Jones.
Calgary student Kristina Waldmann was diagnosed with a pineal cyst and travelled to Houston for the surgery. Her parents mortgaged their house to cover the cost.
“When I realized the symptoms were gone, I was really relieved because part of me worried this wasn't the answer,” she said.
Next Steps for Hein
Mandi Hein has an appointment with a neurosurgeon later this month and hopes the doctor recommends her as a candidate for surgery.
Otherwise, Hein said she needs $110,000 to have the cyst removed in Texas.
In the meantime, Hein has set up a fundraising page to begin working towards the financial goal.
"Nobody should be put through this. Nobody should have to live with symptoms I live with that affect your whole family," she said.
Manitoba Heath tells CTV if a specialist makes a referral for surgery to remove the pineal cyst, it could provide some of the coverage.
Hein's husband said he's not sure what it will take to start seeing full medical coverage.
"It's going to happen to other Canadians, when does it end? Is it going to be up to the Canadian populace to donate to other people, so they can have surgery and have a life?" he said.