Brandon Loney, of Peace River, Alberta, has experienced unbroken pain for the last year and a half. He doggedly pursues care through an often confusing healthcare landscape, seeking solutions for his draining and debilitating condition. He was seen in the emergency room more than 30 times and put through almost 40 tests. Still, he has suffered awful wait times in receiving a proper diagnosis and subsequent treatment.
As a sidebar, Loney discovered he had a testicle cyst. In response, he was placed on a waiting list for a urologist, with an expected wait time of over a year and a half. Then his luck took a drastic turn, as he was eventually found to have a Tarlov cyst after more extensive scans. This very uncommon condition is characterized by fluid-filled cysts at the bottom of the spinal cord. Tarlov cysts are typically discovered accidentally during medical examinations. When left untreated, they can cause debilitating pain — the same kind of pain, she says, that Loney is suffering from.
The pain presents itself as shocking pains that hit suddenly during the course of the day. “It feels like somebody’s constantly just putting pressure on my pelvic region,” Loney stated. “Then at random times of the day, it will feel like somebody stabbing me multiple times over and over, down in that general region.”
While Loney was disabled by constant pain, he was told to manage this through over-the-counter medication. The need for these drugs led to the development of stomach ulcers. This situation has adversely affected his life in profound ways. He had had to give up his work as a tradesman and now struggles every day with the physical toll that his previous trade has taken on him.
Loney’s girlfriend, Tyra Prowse, has been making sure that people know about his difficult journey on social media. She hopes to bring attention, not just to his plight, but to the critical need for timely specialist care for rare, complex conditions across Alberta. “People are out there with real issues and they want their lives back,” Loney expressed.
The couple are most worried about the lack of any specialists trained to treat symptomatic Tarlov cysts in Alberta. Prowse noted, “The specialists or the neurologists that are educated with the Tarlov cyst and the pain that they actually can cause are very far and few between.” This shortage exacerbates the long wait times for appointments, leaving patients such as Loney without critical services.
The Alberta healthcare system has come under fire in recent months for its backlogs in treating patients with complex ailments. A spokesperson from Acute Care Alberta remarked, “High referral volumes, growing patient complexity and limited specialist capacity contribute to longer waits in neuroambulatory clinics.” This is a systemic problem that frustrates millions of people who need specialist care but are ultimately stuck waiting indefinitely for the care they need.
Louisiana activists Loney and Prowse go to the mat for timely treatment. All the while, they emotional burden of his rapidly failing health. Prowse mournfully opened up about the impact of this as she watches her husband turn into “the ghost of a man he used to be.” Today, she grieves for the dynamic man he used to be. “It’s heartbreaking,” she said.
Loney and Prowse are pursuing extraordinary lives of public service by pushing to change the health care system. Their goal is to raise awareness about the dire need for increased access to specialists and faster diagnoses for patients with rare diseases. “I’m getting treated for one thing and then a week later I’m being treated for something completely different,” Loney explained, emphasizing the confusion and frustration that accompanies their experience.
Fortunately, the Ministry of Primary and Preventative Health Services has answered this challenge. Last week, they made headlines by announcing new initiatives — including their Facilitated Access to Specialized Treatment (FAST) program — to expand access to specialized treatment. Many patients remain skeptical about the effectiveness of these measures given their ongoing struggles.
Prowse articulated her concerns regarding Alberta’s healthcare system: “I’m not saying that we need a paid system here, but the free health care system needs to change.” Her words reflect a growing sentiment among many Albertans who feel that timely access to healthcare should be prioritized.
