Brandon Loney, who now lives in Alberta, suffered from constant pain for a year and a half. His fight is not only against a rare, complex medical condition. He’s been to the ER over 30 times. He had a multitude of tests and battled through a first misdiagnosis as testicle cancer. Loney has a discouraging wait of up to a year and a half to see a urologist. In the process, his health only worsens while he searches for solutions, answers, and a way to heal him.
It took doctors 10 years to determine that Loney has a Tarlov cyst. This rare type of cyst is found at the end of the spinal cord. Though typically found incidentally, Tarlov cysts can lead to crushing, disabling pain in extreme situations. Loney’s pain is a highly localized pressure sensation in his pelvic floor. All of a sudden he starts developing stabbing pains just like somebody is stabbing him ten times over.
At the moment, as he journeys through this difficult health landscape, the only thing Loney has been prescribed is over-the-counter medicine to deal with his pain. This approach has only created even more complexities, manifesting as stomach ulcers. On top of that, the drugs knock him out, robbing him of basic quality of life and function. The debilitating nature of Loney’s condition upon his ability to work, and therefore his quality of life, cannot be overstated.
“I used to have a really, really great life,” said Loney, looking back on a time and life that is hard to fathom given where he finds himself today. His anger and desperation at being treated for everything except the conditions he developed. Until very recently, he hadn’t gotten a clear answer. “I’m getting treated for one thing and then a week later I’m being treated for something completely different.”
This constant battle has weighed not only on Loney, but on his girlfriend, Tyra Prowse. And perhaps more importantly, she actively documents his experiences on social media. Her ultimate aim is to educate and inform folks on what rare disease patients are going through in Alberta. Prowse illustrated the excruciating psychological toll of watching her spouse in pain. As she explained, “I wouldn’t wish this experience of watching your other half — your soulmate — literally disintegrate in front of you, on my worst enemy.”
Now the couple is advocating for broader changes in the healthcare system. Second, they should greatly reduce patients’ access to timely specialist care, including patients with rare or complex conditions such as Tarlov cysts. Specialists trained to manage symptomatic Tarlov cysts are few and far between in Alberta. This dearth piles on even more obstacles to Loney’s search for relief. Prowse noticed that hardly any specialists or neurologists are aware of Tarlov cysts. He explained that the people who understand the suffering these cysts can bring are few and far between.
The lengthy waiting periods for an initial neurology examination add salt to their wounds. The pair is convinced a lot of people are going through the same fight. Specifically, they say that “the folks out there who are suffering with real problems… they want their life back.”
To address these issues, the Ministry of Primary and Preventative Health Services has implemented programs. These important programs — and many like them — ensure that patients have better access to important specialized treatment. “We’ve increased the Facilitated Access to Specialized Treatment (FAST) program among Primary Care Alberta,” a spokesperson on the ground confirmed. Still, Loney isn’t convinced that any option on the table would be effective.
