The Canadian healthcare system told a BC woman needing urgent medical care to wait two years for an appointment just to speak to someone on the phone.
Tara Matthews suffers from a rare condition called Tarlov Cyst Disease. She was diagnosed this April and has been experiencing a rapid decline in her health and her ability to perform even the most basic day-to-day tasks.
Her condition requires her to get surgery, but she feels as though the Canadian and BC healthcare systems have dismissed her entirely.
“I’m feeling a lot of times I’m just getting shoved off to the next doctor,” she said in an interview with Daily Hive.
Not the ideal solution
Courtesy of Tara Matthews
According to Matthews, two neurosurgeons in Canada acknowledge Tarlov cysts, and she was referred to one of them. However, her appointment, which is just a phone consultation, won’t be till August 2026.
“Navigating this health issue has caused me to lose faith in the Canadian medical system.”
Matthews is only 38 years old. She has found one option to get the treatment she needs, but it’s certainly not the easy road. Matthews would have to fly to Turkey to meet an American doctor who would perform her surgery, and she would have to raise nearly $100,000 to do so.
“I’m more scared of the travelling than getting the surgery because it’s such a long, long trip.”
Tarlov Cyst Disease impacts the spinal nerve roots in the spinal column. Last summer, Matthews began having sciatica pain in her leg. This April, she began experiencing the worst pain she has ever experienced in her life, and that’s when she was diagnosed.
In many cases, the disease is asymptomatic. But that’s not the case for Matthews.
When her flare-ups with Tarlov Cyst Disease happen, it makes it impossible for her to drive a car, walk, or even stand up.
Working from home isn’t easy anymore, either. So a long flight to Turkey isn’t ideal, but it has become her only option, aside from waiting two years for that phone call.
Matthews is a biologist who has been working on ecological restoration and conservation for nearly a decade. However, her rare neurodegenerative disease has made it impossible for her to continue doing the work she loves.
Dismissed by the BC healthcare system
Margarita Young/Shutterstock
We put Matthews’ situation to the BC Ministry of Health.
“Generally, in the provincial health care system, the most responsible physician (MRP) — the physician who has overall responsibility for directing and coordinating the care and management of an individual patient at a specific point in time — determines what treatments and surgeries are in the best interest of the patient,” the ministry told Daily Hive in an email.
The ministry also told Daily Hive that the province covers elective out-of-country procedures “in certain cases.”
We asked Matthews about that.
“The only way for me to get it covered would be that no single doctor in all of Canada would be willing to do the surgery.”
As mentioned, that isn’t exactly the case, but again, Matthews would have to wait two years for a phone appointment to maybe secure her surgery. Over that waiting period, her condition would undoubtedly worsen.
The other option is to find a doctor who would be looking to perform this surgery for the first time.
“I don’t feel like being a guinea pig,” Matthews said.
The most frustrating part for her has been being told by doctors that her health concerns aren’t what she believes them to be.
“I’ve had neurologists tell me that the cysts aren’t what’s causing my issue, but they won’t give me any other thing that could be causing it.”
Cysts along Matthews’ sacrum. (GoFundMe)
In a worst-case scenario, if she doesn’t get the care she needs as soon as she can, she could suffer from permanent nerve damage or suffer from her current symptoms and be bed-bound forever.
A glimmer of hope
KH M OWAIS QARNI/Shutterstock
There’s no rhyme or reason for why some people develop Tarlov Cyst Disease.
According to Matthews, “You could be born with them, but also they seem to occur if you’ve had a trauma, like a car accident, or you’ve fallen really hard on your tailbone or something like that.”
“I think with me; it’s probably a little bit genetic and a little bit that I’ve done hard physical labour for the last nine years.”
Matthews has found others who are suffering from her condition, and thankfully, those who have gotten the surgery seem to have had a major improvement in their health. She also has a partner helping her through this tough time, and she couldn’t imagine what it would be like to deal with it alone.
“I’ve been trying different medications, but most of them don’t do anything. So I’ve just been having to endure.”
As of this article’s publication, Matthews has raised just over $26,000 of her $95,000 goal. She’s raised enough to put down a deposit for her surgery, which is next available this October. So, she has just over a month to raise another $70,000.
“There should be more funding going into medical services for this. It’s highlighting not just for me but for other people how the system is failing us.”
We’ve contacted Health Canada for a statement about Matthews’ situation but have yet to hear back.
Have you faced similar issues getting urgent medical care in BC or Canada? Let us know in the comments.
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