THUNDER BAY -- For most of her life Cassandra Elvish knew something was wrong.
However, doctors were always unable to provide any answers until one day, when she was diagnosed with a brain malformation disorder.
“It was validation finally. For 33 years I went through major symptoms like headaches, nausea, vomiting, dizziness, my whole left side had gone numb, I had trouble speaking, trouble seeing and I was missing more work than I was at,” she said.
She is one of at least 18 people in Thunder Bay who have been diagnosed with Chiari, a rare disorder that the medical community is now just starting to understand.
The cause of the disorder is really quite simple.
“It’s a rare brain disorder in which the brain is too large for the skull and it gets pressed into the spine,” Elvish said.
There is no cure for the disorder and the only treatment is brain decompression surgery, which provides relief.
In contrast to Elvish’s lifelong mystery, Kevin Mason considers himself lucky.
For nearly a year he knew something was not right but nobody was sure what it was. He then took matters into his own hands, leading to a diagnosis of a brain malformation disorder.
“I had about a year where I was trying to get a diagnosis and it was very difficult to do. One day I finally went to the emergency and told them I wasn’t leaving until I get a CAT scan. I was there for eight hours,” he said.
A subsequent MRI confirmed a diagnosis of Chiari. Mason then underwent two brain decompression surgeries, with the first taking place in May 2012. A second one was performed later that summer.
With such a high number of people suffering from the disorder compared to statistics, Chiari is something the local medical community has become quite familiar with.
Mason believes that knowledge was what led to him getting diagnosed relatively quickly.
“One of the blessings of Thunder Bay is the awareness in the medical community. We have radiologists who are catching it on the CT scans and catching it on the MRI. Having neurosurgeons who are on board to help us out and having our support system here is crucial,” Mason said
Those who are afflicted locally have come together to form a local chapter under the Canadian Chiari Association, and organized their first annual walk which was held at Chapples Park on Sunday.
More than 100 people braved weather conditions that seemed more suited for late fall than the first week of September.
For a disorder that does not have a high profile, Elvish considered the turnout to be remarkable.
“It’s been a year in the making. We’ve had wonderful volunteers and supporters out here,” she said.
“I’m amazed at the turnout. I can’t believe how many people are here.”
The profile of Chiari appears to be growing across the country as the CN Tower will be lit purple Sunday evening to raise awareness. September is Chiari Awareness Month.
