Brandon Loney has been in agony for the past year-and-a-half.
Once putting in more than 60 hours a week as a tradesman and proud to be a hard worker, he’s now lost employment because he can no longer physically do his job and says medications doctors have put him on leave him in a daze.
“I just used to really, really enjoy my life,” Loney told Global News. ” (But) the last year and a half have been a struggle.
“It makes it difficult to even want to wake up some days.”
The severe headaches, pain in his pelvis and other incontinence issues, as well as pain into his legs has greatly impacted his mental health.
“It feels like somebody’s constantly just putting pressure on my pelvic region,” he said. “Then at random times of the day, it will feel like somebody stabbing me multiple times over and over, over again, down in that general region.”
Loney said he was also advised to take over-the-counter medication to manage the pain, which he said led to stomach ulcers.
Loney has been to the emergency room more than 30 times and undergone countless tests, but said he felt dismissed.
“I’m getting treated for one thing and then a week later I’m being treated for something completely different,” he said.
“I just feel like I’m just not getting enough answers.”
Originally, Loney was told he had a testicle cyst and was put on the list to see a urologist — which he was told could be up to a year-and-a-half wait.
It isn’t a unique story in Alberta.
“People are out there with real issues and they want their lives back,” Loney said.
Loney’s girlfriend, Tyra Prowse, said she’s watched her partner live a nightmare.
“I wouldn’t wish watching your other half — your soulmate — fall apart in front of you, on my worst enemy,” she said.
“He only sleeps about two hours at night. He is not able to eat because of the nausea.”
Prowse started posting Loney’s journey for answers on social media on her accounts, which were originally started as a way for them to share their life of turning a school bus into a home.
As their life has changed, so too has their content.
“It’s into Brandon’s health journey and us trying to advocate for everybody else who’s also left suffering like he is,” Prowse said.
Through their TikTok account, the couple was gifted a paid MRI at a private imaging clinic from an anonymous donor.
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Prowse said it showed Loney has a Tarlov cyst: a rare cyst on the bottom of the spinal cord.
In most people, the cyst doesn’t produce symptoms. But for a small percentage, it can be life-altering. Tarlov cysts are often incidental findings, but in rare cases can cause debilitating pain, according to spine specialists.
“It was like hitting the lottery, having all of those boxes check off — which is weird because when it’s a health issue, you never, ever want to think of it like that,” Prowse said.
“Being able to have an answer after that long was just so rewarding.”
Having an answer is rewarding, however the fight has only just begun.
The waitlist for a neurology consultation is long in Alberta, and the couple said specialists with experience treating symptomatic Tarlov cysts are extremely limited.
It’s not just stressful, but also a strain on their finances. The couple said because Loney doesn’t have a formal diagnosis from a specialist yet, he doesn’t qualify for disability supports. In the meantime, his employment insurance has run out.
Prowse said she’s working extra long days but they are still struggling to pay for basic needs like housing, utilities, essential hygiene products and groceries.
The couple is now fundraising to go out of country for treatment.
“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,” Prowse said.
His experience highlights ongoing concerns about access to timely specialist care in Alberta, particularly for rare or complex conditions.
When asked about extended wait times for specialists in Alberta, the provincial government said there’s an all-time high number of 7,058 specialists practicing in Alberta, and the UCP said it’s investing $7.7 billion into physician compensation and development next year.
“We’ve also expanded the Facilitated Access to Specialized Treatment (FAST) program through Primary Care Alberta,” the Ministry of Primary and Preventative Health Services said in a statement.
“FAST has expanded from two participating surgical specialties in 2022 to nine surgical specialties today, and processes over 150,000 referrals per year plus 21,000 calls from patients and providers, helping patients get assigned to the right surgical specialist.
“These steps are helping, but we know more needs to be done. That’s why we will be introducing new legislation to expand access and choice for preventive screening, elective testing, and other diagnostic services.”
Acute Care Alberta was also asked about increasing access to specialists in the province, admitting that outpatient wait times for specialists are “longer than desired” and adding that timely access to neurology and neurosurgery care “remains a priority.”
“High referral volumes, growing patient complexity and limited specialist capacity contribute to longer waits in neuroambulatory clinics,” the statement read.
“To help address this, Neuroscience Care Alberta launched a project to develop and test an AI‑enabled triage prototype, initially for stroke clinics, to improve efficiency and lay the foundation for better wait-time visibility and future system improvements.”
That all means very little to the couple right now, as they struggle to get through each day.
“Watching him become the shell of a man that he has become, in contrast to a man who works 60-plus hours a week and then would walk his dogs in the middle of the night and be that great dog dad and that great other half — it’s heartbreaking,” Prowse said.
“I just want to see him have his life back. “
Loney said it’s not just about his own care — he wants it to be easier for all Albertans to get the help they need.
“I’m not saying that we need a paid system here, but the free health care system needs to change,” Prowse added.
Welcome to the club, he’s far from being alone.
Keep voting for u see pee and more of the same good things will follow.
Relying on the Canadian Health Care System is a mistake. Go to a country that doesn’t have ‘government only’ health care if you want timely care.
Standard story. I sympathise, as I too suffer from back pain, which has been diagnosed as a 23 year long sprain, a kidney stone and old age. Living should not hurt, and we deserve to be treated and get well again. OTC pain killers should not the answer to everything.