A BC resident suffering from a rare condition has exhausted all her options in Canada and is now booking a trip to Turkey for a surgery she can’t yet afford.
We first shared Tara Matthews’ story back in August. She’s dealing with something called Tarlov Cyst Disease. She was diagnosed in April but says the Canadian and BC healthcare systems have failed her.
The option she got in Canada was to wait two years for a phone call to discuss her condition. The alternative she’s choosing is to fly to Turkey as she found a doctor willing to perform the surgery, but it’s not cheap.
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Desperate times, desperate measures
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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.
One of the things that has been the biggest frustration for Matthews is the denial of her ailment.
“Despite no lack of trying, I still haven’t received any medical help from doctors here,” Matthews told Daily Hive.
“I had an appointment at urgent care recently, where the attending doctor reached out to a neurosurgeon about my symptoms and was told point blank that the Cysts are not the cause of my pain. He did not offer any inclination of what else was causing my issues.”
Matthews added that she doesn’t think it’s appropriate for a doctor to say that something isn’t contributing without offering any other suggestions for resolving the situation.
“It leaves the patient totally alone and in the dark with nowhere to turn.”
While Matthews doesn’t want to travel internationally to get treatment, she’ll be heading to Cyprus in Turkey for the procedure on October 18, but she still needs another $60,000. She couldn’t wait any longer due to the intense pain and her feeling ” the risk of permanent paralysis.”
Why are options so limited in Canada?
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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, wouldn’t have been until August 2026.
Our request for a comment from Health Canada went unanswered. Meanwhile, the BC Ministry of Health told us that out-of-country procedures can be covered by the province if it is determined that no one is available in BC or the rest of Canada to do them. While someone might potentially be available in Canada in two years, she doesn’t feel she has the time to wait as her condition worsens.
One sliver of positivity has emerged from this ordeal. Since we published the first story a few months ago, Matthews has been contacted by others with the same symptoms who are experiencing the same problems with the medical system.
“I am starting to feel less and less like this is actually a rare condition, but instead something that the medicinal field is just not very informed about.”
Following the publication of our last story, we also received an email from someone claiming to have some knowledge about Tarlov Cyst Disease.
“The biggest hurdle is the fact that symptomatic Tarlov cysts have essentially been dismissed by the medical community for the last 75 years, but especially the last 40 since the MRI machine has existed,” they said.
They also claimed that there aren’t enough health professionals in Canada equipped to handle surgeries and that doctors with the expertise to handle the procedure are few and far between. In a healthcare system as backed up as parts of this country, the waitlist for a specialist like that would likely be long.
Fundraising for a cure
GoFundMe
Matthews’ fundraiser was started in July with a goal of $95,000. As of this article’s publication, she has only reached $35,869 of that goal.
That leaves Matthews with 11 days to raise $60,000. We asked what would happen if she arrived for her surgery without the required funding.
“If I can’t pay the full amount, I can’t get the surgery, and they have to push it off to some later time within this calendar year. I’m currently looking into loans and things. It is frustrating that such a huge amount is not covered at all by any Canadian healthcare system.”
Matthews hopes that her story sheds light on the Canadian healthcare system’s inadequacies.
“I am hoping sharing my story brings more light on the gaps in our country’s medical system and helps spread information about this disease. There are many people suffering with symptoms for years, and no one is able to tell them what is wrong.”
If you’d like to donate to the fundraiser, click here.