B.C. woman with debilitating disease faces two-year wait just for consult with specialist

As a restoration ecologist, New Westminster resident Tara Matthews helps protect nature. Now she’s the one who needs help.

And she can’t get it from the B.C. health care system.

Matthews, 38, has a painful and debilitating disease called Tarlov cysts, but has been told she will need to wait two years just for a phone consultation with a neurosurgeon.

She’s had to stop working in the field because she can’t stand due to the five cysts on her spine that are causing extreme pain, muscle spasms, and paralysis. She uses a wheelchair to move around her house.

After several ER visits and MRIs, the cysts were discovered in April at an emergency room while she was visiting Nanaimo, and Matthews was given a phone appointment with Dr. Navraj Heran, a neurosurgeon at Royal Columbian Hospital, for August 2026.

“At first I thought the date was a typo, but now I have spoken to others who are also waiting two years to see this neurosurgeon,” she said.

Because this is a rare condition, Matthews said she was passed from doctor to doctor, with none offering any help or relief. This left her trying to manage the illness on her own.

“I always thought that if anything happened to me, the Canadian health care system is so good it would take care of me. But the second that I have a medical issue I’m hit with the harsh reality that it is quite flawed, and there’s a lot lacking in the system,” she said. “And I know it’s not just me, that this is happening to people all over B.C. It’s scary.”

From speaking with other Canadians she met online with Tarlov cysts, Matthews found out that her best option is to undergo surgery with one of the few experts in the world, Dr. Frank Feigenbaum, an American neurosurgeon and chief of the medical advisory board for the Tarlov Cyst Foundation.

He has agreed to treat her as an international patient at a clinic in Cyprus and can book her at the end of October.

But the surgery costs an estimated 56,000 euros, or about $85,000, plus travel costs. Matthews doesn’t know where the money will come from. Matthews, along with her friend and business partner Krystal Brennan, have started a GoFundMe campaign in an attempt to raise the money.

She said B.C. won’t pay for the bill if there is another doctor in Canada who can perform the surgery, and there are two. But she’s been told to wait two years just to find out if a neurosurgeon will see her.

The longer she waits for any help, the less chance she has of recovering, she said, because the disease can cause permanent nerve damage.

An MRI report from April 15 from Island Health, which Postmedia has seen, confirms a diagnosis of “lesions most consistent with Tarlov cysts.” An assessment of Matthews from Feigenbaum’s office says “imaging reveals several large intrasacral meningeal cysts within the sacral canal” that are causing compression of the nerve roots.

Matthews said she is lucky to have had Feigenbaum confirm her diagnosis.

For nine years, her consulting company, Echo Ecological, has restored estuaries, creeks, and wetlands through various grants and non-profit partners on the North Shore, before branching out to other projects in Metro Vancouver. They work with schools to educate children and do a lot of community outreach work.

However the field work includes physical work, such as pulling invasive plants, stabilizing slopes, and monitoring wildlife in rain, wind, and snow, none of which she’s been able to do in her condition. She works from home directing her crew but longs to get back in the field.

“It makes me really sad,” she said.

She’s gone to physiotherapy, massage, and has received pain medication and injections, but nothing has made the pain go away.

In April of this year, she started experiencing more extreme nerve and body pain. It came on very suddenly and she had to stay in bed for several days.

She was in the ER four separate times during a two-week period, including the one in Nanaimo where she received an MRI and a diagnosis.

Doctors, nurses and other health professionals have been sounding the alarm for several years over referral waiting lists growing because of a family doctor shortage and understaffed and overcrowded emergency rooms.

B.C. United health critic MLA Shirley Bond was reached for comment and said it was “unacceptable that British Columbians are being forced to raise tens of thousands of dollars to seek vital surgeries in foreign countries.”

“One million British Columbians just like Tara are currently wait-listed to see specialists, and the fact that it takes two years just to get a phone consultation underscores how badly David Eby and the NDP have failed to address health care needs in our province,” said Bond in a statement to Postmedia.

Bond went on to say the province’s health care had gone from “one of the best in the world to one of the worst” under the NDP, calling on voters to keep health care top of mind when heading to the polls in the October election.

“No one in our province should be forced to look overseas for critical medical treatment, yet after eight years of NDP governance, this is becoming far too common.”

The B.C. Health Ministry said privacy rules limit what it can say, but said its information “doesn’t exactly align” with that provided to Postmedia.

A report last year by the Fraser Institute found the waiting times for a referral from a general practitioner to getting treatment by a specialist increased to 27.7 weeks in 2023 from 27.4 weeks in 2022. This represents the longest delay in the survey’s history and is 198 per cent longer than the 9.3 weeks Canadian patients could expect to wait in 1993, the report found.

Earlier this year, an internal medicine specialist in North Vancouver told Postmedia that he had 56 new referrals in under 48 hours, many of them requiring urgent care for serious illnesses such as diabetes or cancer. Dr. Kevin Mcleod said he’s worried that the critical backlog of patients is putting lives at risk.

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