July 22, 2024


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We fled to the U.S. after long waits, misdiagnosis in Canada

We fled to the U.S. after long waits, misdiagnosis in Canada

For a health reporter, what made the cancerous spine tumour diagnosis even harder to swallow was the ordeal beforehand in the health-care system

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This story was originally published on Dec. 15, 2023. We are republishing as one of National Post’s best longreads of the year.

It was a moment neither of us will likely forget. As my wife and I sat in a Niagara Falls, N.Y., medical office, Dr. Michael Stoffman pointed to an MRI image of Zena’s cervical spine and explained its grim meaning. The intense pain and disturbing neurological symptoms she had been suffering for months were not the result of compression fractures of vertebrae in her neck, as we had been led to believe by scans conducted, belatedly, in Ontario.

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The culprit was more “sinister,” said Stoffman, a Yale-trained Canadian neurosurgeon practising south of the border. A large tumour — likely metastasis from breast cancer she had experienced seven years earlier — had invaded Zena’s spine and was pressing dangerously against the spinal cord.

A stricken look came over my wife’s face as Stoffman’s unexpected diagnosis sunk in. “Am I going to die?” she asked. My heart sank.

What made the diagnosis even harder to swallow was the lead-up to that September appointment across the border.

For months we’d been struggling to get Zena an MRI in the Toronto area, the scan obligatory to obtain an appointment with one of Canada’s chronically overburdened spinal surgeons. As she waited, Zena’s ability to walk grew progressively weaker and her hands burned with a constant tingling sensation. The best our family doctor could obtain was a scan on Sept. 29, three months after the physician submitted a requisition.

I finally persuaded a radiologist I got to know during my years as a National Post health reporter to wrangle Zena a somewhat expedited MRI slot at his Toronto-area hospital — only for her problem to be misdiagnosed there.

Meanwhile, a sit-down with a spine specialist still seemed a far-off, uncertain prospect.

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Frustrated and increasingly worried, we arranged for 62-year-old Zena — an accomplished print and broadcast journalist — to see Stoffman after first undergoing an MRI at a Buffalo clinic, all at our own expense, of course.

A decade ago I wrote about the surgeon, a transplanted native of London, Ont., and how he helped a constant flood of Canadian patients fed up with waiting here. Now my own spouse had become one of Stoffman’s spine-surgery refugees. He finished the appointment by grabbing my phone and urging our family doctor’s office to urgently find Zena help in Toronto.

The message got through. A day and a half later, she underwent emergency, 10-hour-long surgery at Toronto Western Hospital, led by one of the world’s leading experts in the field. Most of the tumour was excised and several of her vertebrae were essentially rebuilt with titanium implants, launching Zena on a treatment journey that has been encouragingly successful.

That was Sept. 9. The MRI appointment our family doctor had arranged through regular channels was still three weeks away. Three weeks in which the expanding tumour could well have wreaked even more havoc. Untreated, such growths impinging on the spinal cord can lead to permanent paralysis or death, says the Mayo Clinic.

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Zena, thank God, avoided that fate. But what about patients less fortunate than us, those who lack the means to pay for care in the United States, or the connections to work the system here? And what if Zena had been properly diagnosed earlier, possibly negating the need for risky surgery?

I spent over 10 years covering health care for the Post, often reporting on medicine’s failings. But even I’ve been conditioned as a good Canadian to believe our system always comes through when truly needed. Once Zena finally made it into the system, her care was indeed prompt, compassionate and high-quality. But her experience until that point was a rude awakening, a reminder of what can and often does go wrong.

My wife did well in the end. She’s back to walking normally, the burning-tingling is much better and oncologists are on top of the cancer. But I believe her case was a near miss.

This is the story of the particular health-care shortcomings Zena encountered — just one part of a broader, troubled picture — and how they might be fixed.

Doctors and another patient I interviewed for this story all expressed dismay at what happened to my wife. None of them was surprised.

Wait times for MRIs, CT scans and other medical imaging, always bad, are becoming a “crisis,” say radiologists. The shortage of spinal surgeons and the hospital infrastructure they need to operate has led to waits for elective procedures of up to two years, even as some surgeons, remarkably, go unemployed. From his perch across the border, Stoffman said the situation in Canada seems to be growing ever more dire.

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“It’s very serious,” said Dr. Hamilton Hall, executive director of the Spine Society of Canada. “It’s way more serious than I think the public realizes.”

X-ray shows how surgeons rebuilt vertebrae in neck.
An X-ray shows how surgeons rebuilt vertebrae in Zena’s cervical spine during a 10-hour emergency operation, after months of delays, a misdiagnosis and a visit to a U.S.-based specialist. Photo by University Health Network

Prolonged waits for imaging or treatment don’t just affect patients’ physical wellbeing, noted Claire Snyman, a Vancouver woman who has had to queue for care repeatedly.

“It impacts my mental wellbeing, my ability to work, be a Mom, a wife, to do the things that matter the most to me.”

And, of course, that longstanding dysfunction has only been exacerbated by the massive backlogs left behind by repeated hospital lockdowns during the pandemic.

Zena’s story began in April, with the onset of intense pain in her shoulders and neck. Like me, she spends a good part of the work day hunched over a computer and assumed she had the kind of soft-tissue injury that would get better with the passage of time. Except, at first, it didn’t.

On May 10 she visited our family physician, who wisely ordered an X-ray, producing the first in a series of surprises. It suggested that Zena had compression fractures — breaks that can be caused by injury or osteoporosis — in two of the vertebrae in her cervical, or neck-area, spine. At the suggestion of the radiologist who “read” the X-ray, the family physician tried for the first time to refer Zena to a neurosurgeon.

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She reported back on June 22 that the specialist said he would first need an MRI — a type of medical imaging that uses a magnetic field and radio waves to create more detailed images inside the body. The family doctor requisitioned a scan from a privately run clinic that does work covered by the Ontario health-insurance plan. A few weeks later Zena heard from the clinic — her MRI was booked, at the very end of September.

By then, the pain had thankfully lessened, replaced by less acute but more ominous symptoms. Zena was having trouble walking — she said it was as if she had flippers on her feet — while her abdomen felt jelly-like. And there was that numbness and painful tingling in both hands.

On July 31, Zena saw our family physician again to report the new set of symptoms. The doctor made another referral to the neurosurgeon, who still insisted on an MRI before deciding whether to see her as a patient.

Meanwhile, as we searched for alternatives, I was taken aback to discover a weird twist of the system in Ontario. Patients dealing with third-party payors — workers compensation, insurance companies, employers, NHL teams and the like — can access private imaging clinics that work surprisingly fast. Most claim to offer a scan within a couple of business days — yes, days, not months. But they were out of bounds for us: it’s against the law for the clinics to serve patients suffering a condition that’s covered by medicare.

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I also appealed to that radiologist I know well and he kindly agreed to arrange a speedier scan at his hospital. Even then, the process was tortuous.

Bizarrely, much of the medical system still relies on facsimile transmissions, and it took another week — until Aug. 10 — for the hospital to find one of the requisitions our family medicine office says it had repeatedly faxed. Zena was given a slot on Aug. 19, lightning-fast for an “elective” MRI.

I see a lot of people from Canada who have great jobs, they have incredible work ethic, they’ve missed very little work in 30 years. Then something happens and they can’t get an MRI

It was a further nine days after that before the hospital posted a radiologist’s report about the scan on Pocket Health — an online portal that patients can access for a fee. Another week passed before the image itself was uploaded. Our family doctor’s office had still not received either.

In the end it didn’t really matter. The report on the scan talked of three compression fractures and “stenosis” — narrowing — of the spinal cord. But the radiologist who interpreted the MRI — or the image itself — had missed entirely the large tumour growing on Zena’s spine.

Dr. Ania Kielar, president of the Canadian Association of Radiologists (CAR), said she can’t comment on my wife’s experiences, but what she and the association report more generally about the state of medical imaging in Canada sounds sadly familiar.

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Delays in getting scans have grown worse in recent years, shooting past the average wait nationwide of 89 days for an MRI before the pandemic, CAR said in October.

“Radiology is like a keyhole in a patient’s journey. It’s very hard to convince someone to operate on you if you don’t have a CT or MRI or ultrasound to figure out what’s going on,” said Kielar, a radiologist at Toronto’s University Health Network. “It’s very hard to get chemo or continue to receive chemo if you don’t know if it’s getting better or worse.

“Can you imagine the anguish, the anxiety, the discomfort that somebody must feel when they know there’s something wrong but they can’t get a diagnosis? That’s heart-breaking.”

One reason for the logjam is that Canada relies on an aging stable of MRI, CT and other medical-imaging equipment, with machines frequently taken offline for repairs, she said.

Stoffman said he considers some of the MRIs conducted here to be of such low quality he regularly has his Canadian patients obtain one in the U.S. Kielar said newer machines can, in fact, produce higher contrast and resolution.

But it’s not just the state of the equipment that’s an issue, it’s the sheer lack of it, too.

Canada ranks 12th among 16 higher-income countries in the number of MRI machines per capita, the Commonwealth Fund reported in 2020. The United States had almost four times as many MRI systems for each million citizens as Canada; Japan five times more.

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The most pressing problem, though, is a shortage of technologists, the professionals who actually operate the equipment, their ranks thinned by an all-time-high job vacancy rate. There are too few programs to train them, and those schools that do exist struggle to achieve full enrolment, said Kielar.

Major investment is needed immediately to replace equipment that’s well past the best-before date, CAR said. Provinces must also help get many more young people trained as technologists, partly by encouraging interest in the field and making it easier for foreign-trained professionals to practise here safely, said Kielar.

When I get a referral for an MRI or other imaging, my heart sinks

Even existing resources could be harnessed more effectively. Artificial intelligence programs already being used in other countries but not here are able to optimize scanning protocols and streamline scheduling and the processing of images, the radiologists’ group said.

And then there is that perennial debate in Canada’s single-payer health-care system, the only system in the developed world that outlaws privately buying or selling medically necessary services. Could an unshackled industry provide better and faster medical imaging?

Six provinces — British Columbia, Alberta, Saskatchewan, Quebec, Nova Scotia and New Brunswick — already allow anyone to purchase private CT or MRI scans out of pocket, sometimes in violation of federal health laws. Saskatchewan requires private clinics to offer a free scan to a patient in the public system for each one it sells outside it.

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British Columbia’s NDP government has recently limited its private tier of medical imaging. For Vancouver’s Snyman, however, it has been a Godsend.

She was supposed to undergo regular MRIs after being diagnosed with a non-cancerous brain tumour in 2010, but within two years her neurologist had stopped ordering the imaging. And when she suddenly started re-experiencing vertigo and migraines, he wrongly diagnosed an ear infection.

Convinced something more serious was amiss, Snyman paid for an MRI at a private facility. The tumour had doubled in size. She was soon undergoing surgery to remove it.

Since then, Snyman has more than once paid for private MRIs after a doctor prescribed them for other conditions. In the public system, she said, her wait is typically six to nine months.

“When I get a referral for an MRI or other imaging, my heart sinks,” Snyman said. “I have no visibility or expectations of even when that MRI appointment is going to land in my diary. That sense of uncertainty for patients is one of the hardest things to deal with.”

Still, she said it’s wrong that only patients who can afford to go private are assured of obtaining an elective MRI promptly.

There are, though, other ways to harness private enterprise. What Snyman accessed was privately paid medical imaging. Ontario’s Conservative government plans to expand the use of privately delivered imaging — for-profit clinics that provide scans funded by medicare — insisting they will reduce public-system wait times.

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If companies were willing to put up the capital to buy more machines, that would seem to solve at least one challenge, but perhaps not a lot more.

Kielar said she’s unsure how helpful private clinics would be, given that the sector’s major problem is a shortage of technologists, regardless of who employs them.

Meanwhile, statistics from the Canadian Institute for Health Information suggest wait times in the public system are generally not shorter in provinces that allow privately paid imaging.

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The scar from spinal surgery.
Zena shows the scar from her spinal surgery. Photo by Peter J. Thompson/National Post

Still, it was the MRI Zena purchased in Buffalo — ironically interpreted there by a radiologist trained at the University of Toronto — that finally identified what was wrong.

Leaving the appointment with Stoffman, we rushed back across the border and straight to Toronto Western’s emergency department. The on-call spine surgeon, who by coincidence was the same one who had received the two previous referrals from our family doctor, was already working the case.

There was one more odd glitch. Early the morning after checking into Western, a different surgeon approached Zena at her bed in the emergency department and said she would be operated on that day at 10 a.m. The time came and went, with no operation. The surgeon later explained that his actual patient had a similar name and had earlier been in the same emergency bed as Zena and that he had mistaken my wife for her. Luckily, patients at Western wear wristbands with identifying QR codes that are scanned constantly, and there was no such confusion in the OR. My wife was operated on first thing the next morning.

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Her surgeon, Dr. Raj Rampersaud, is considered a world leader in minimally invasive spinal operations. Over 10 hours and without a break, he and his team accomplished a feat that still boggles my mind. Making incisions at the back and front of Zena’s neck, they removed the damaged bone and tumour and rebuilt what was left, all while avoiding damage to that crucially important length of tissue — the spinal cord. The personable Rampersaud sluffed off his achievement. “We do this all the time,” he told me.

By the time he operated, it was assumed the tumour had spread from the early-stage breast cancer Zena experienced in 2015, which had seemingly been cured. In fact, it’s relatively common for breast cancer to metastasize to the spine. Some health websites even suggest that former patients be alert to prolonged back or neck pain for that very reason.

Which again raises the question: why, apart from the delay in getting an MRI, did it take so long for Zena to be correctly diagnosed?

Rampersaud told me outside the operating room that he receives about 40 referrals a week for patients with compression fractures and the like, most of whom do not need surgery. He‘d rarely make it into the OR if he saw all those people, the surgeon said.

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But he did note that if Zena’s neurological symptoms — difficulty walking, burning palms — had been more prominently red-flagged in the family doctor’s second referral, his team would have acted on it, as they did when she finally ended up in emergency with the tumour diagnosis.

There are broader problems, too. For one, Canada simply lacks enough of the neurosurgeons and orthopedic surgeons like Rampersaud who do spinal operations, said the spine society’s Hall. And even those 230 specialists across Canada get little OR time, maybe one or two days a week each, he said.

At the same time, many orthopedic surgeons finish their training and simply can’t find full-time positions, which require a hospital or health authority to provide all the funding needed to accommodate their work. Between 2015 and 2020, 123 of the 430 graduating orthopods, as they’re colloquially known, were still seeking full-time jobs, while another 72 had decamped to another country, usually the U.S., according to the Canadian Orthopedic Association.

As for spine operations specifically, they take up large blocks of OR time and other resources, so few hospitals encourage them, Hall said.

It all leaves the specialists overwhelmed with potential patients.

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“There are cities, Winnipeg was one, where the surgeons were not taking any new (non-emergency) bookings at all,” said Hall.

Unlike Zena, most spine patients are deemed “elective” cases, but they often suffer excruciating pain and disability while waiting, keeping them off work and sometimes dependent on habit-forming opioid painkillers.

To get those people at least assessed sooner, Rampersaud devised innovative “rapid access clinics,” where physiotherapists and chiropractors quickly evaluate lower-back-pain patients, sending those who would benefit from an operation to a surgeon.

It’s a good concept, but still not widely enough used, even in Ontario, said Hall.

In Zena’s case, it was that trip to Niagara Falls that saved the day, though Stoffman sensibly suggested that the major surgery she needed would best be carried out close to home. He said he sees at least a half-dozen patients from Canada every month, often forced to give up work as they wait for an operation here, or unable to get any help at all because they’re among the 6.5 million Canadians who lack a family doctor. A framed copy of my 2013 story on the unique cross-border aspect of his practice still hangs in his office today.

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“We’re seeing more patients with more serious problems like Zena’s,” Stoffman said. “I see a lot of people from Canada who have great jobs, they have incredible work ethic, they’ve missed very little work in 30 years. Then something happens and they can’t get an MRI, they can’t access the system at all.”

But while American doctors provide a welcome safety valve, mimicking the U.S. system in Canada would seem to make little sense.

Americans generally need good health insurance or deep pockets to access the kind of speedy treatment Stoffman and colleagues offer. Even with Obamacare, 22 million U.S. residents remained completely uninsured last year. Not only does the U.S. perennially rank last in the Commonwealth Fund’s international health-care rankings — right behind Canada — American life expectancy is five years less than ours.

And while Canadian hospitals must limit procedures to control costs, those south of the border often face an opposite pressure, earning more revenue with each additional procedure they provide. A fascinating 2019 study co-authored by Rampersaud found that New York state performed three times as many elective spine operations per capita as Ontario. The paper suggests the American system does too many surgeries — risking either no benefit or actual harm for some patients — and Canada too few.

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Still, a happy median between the jurisdictions would see Ontario performing 6,513 more spine surgeries every year, at a cost of $42 million, the study said.

Which might point to the stark bottom line for all the problems. Like so many challenges faced by Canadian health care, an infusion of more cash — whether from increased government spending, private investment, patient co-payments (like many European countries charge) or finding hidden efficiencies — ultimately seems to be the only path to curbing the waits for medical imaging and spine operations.

In the meantime, it is surely inevitable that the problems Zena faced will continue.

“Sooner or later,” said the spine society’s Hall, “enough bad things are going to happen that people are going to have to wake up and say ‘We have to do something about this.’ ”

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