An Ontario woman waited 5 years to get a surgery. Now she is back on a waitlist after it failed
Karen Harris said she spent years on the surgical waitlist, but when she got the procedure done, it failed. Now she's waiting again.
It took about five years for Karen Harris to get the surgery she needed and when she finally did, she says it failed and she was placed back on a waiting list with no indication of when she will be seen again.
Harris, a Windsor resident, has a rare condition caused by an elongated styloid process known as Eagle's syndrome.
Because of the condition, she says that she can't sit upright for a long time, is forced to wear a neck brace whenever she goes in a car and, at times, needs to use a wheelchair.
She spent years on a waiting list for a procedure that doctors told her would finally help relieve her symptoms and improve her qualify of life and finally got the call late last year.
Karen Harris
But days after undergoing the procedure at Mount Sinai Hospital in Toronto on Dec. 4, she says she hemorrhaged litres of blood and was thrown back onto the surgical waitlist.
She said that she has considered going to the U.S. to get the procedure done but would have to put a second mortgage on her home to do so as the operation costs anywhere from US$30,000 to $100,000. Plus, she's afraid of what could happen if she has complications post-operation again.
'I'm losing. It's a losing battle,' she said of the frustrating wait for care. 'I'm just in this limbo again and it's just horrific.'
Harris is just one of more than 200,000 Ontarians that are believed to be waiting for a surgical procedure.
Nationally, the Fraser Institute estimates that approximately 1.5 million people are waiting for some sort of procedure. It says that the proportion of the population on a waiting list varies from a low of three per cent in Ontario to nearly eight per cent in Prince Edward Island.
Harris told CTV News Toronto that her experience is particularly frustrating because it feels like 'a systemic issue.'
'There's just no pathway forward for a lot of patients like me, with chronic health conditions, or people waiting for surgery,' she said. 'We have amazing, worldclass doctors and hospitals a couple hours away from Windsor but it's just these silos—these healthcare silos—are just really making it impossible for people like me to get care.'
Both Mount Sinai Hospital and Windsor Regional Hospital wouldn't comment directly on Harris's case.
'We know that any delay in care is stressful to our patients and their families,' a statement from Mount Sinai reads.
The Toronto hospital adds there are 'many factors' that come into play with regards to their surgical waitlist and when surgeries are scheduled, but they did not elaborate further on what those factors are.
'Our surgical teams work to ensure timely access to care, balancing the needs of all the patients we serve.'
Harris has been on long-term disability since 2019
For years Harris, 37, enjoyed her life to the fullest, working her dream job at a nutraceuticals company in Windsor. Harris says she has had underlying aches and pains before but dismissed her concerns as she'd chalk it up to the growing pains of being a mother to two, now-teenage, daughters.
It was one day when she was making her way to the office that her aches and pains 'all of a sudden' hit her, causing her to go completely out of breath from just walking in the parking lot.
'My heart rate was just not slowing down, I was getting really dizzy,' Harris recounted in an interview with CTV News Toronto.
Though she had a high heart rate already due to her POTS syndrome—an autonomic nervous system disorder—imaging she had taken after this episode revealed she also has Eagle's syndrome.
'It's where I say it's like chicken bones, like they are extended multiple centimetres from the base of my skull, pressing into the sides of my throat,' Harris said.
'I've choked, I've aspirated fluids, I have hearing issues, facial pain—the list just goes on, and on, and on, and on."
Eagle's syndrome
An image of the elongated styloid processes.
Harris has been on long-term disability ever since her diagnosis, starting in 2019.
In 2020, she said she got a referral to surgeon in Toronto who could help her. At first it was an in-person appointment that May, which was switched to a phone call in June 2020 as a consequence of the COVID-19 pandemic. By January 2021, she says she finally got to see the surgeon in person, who then approved her for surgery.
Harris recounts being told she was put on a high-priority waitlist and would be seen in either a couple of weeks or months. She adds she was told she would need to isolate while she waited for surgery, as her surgeon specialized in head and neck cancer surgeries and could not risk falling ill.
So, Harris isolated. She said she didn't leave her house and didn't have anyone come over for a visit, because she didn't want to ruin her chance of getting surgery. Her daughters even transferred to online schooling, the mother adds.
'I missed everything for weeks and weeks, years and years,' Harris said.
At the start she says the communication between her and health-care staff was 'pretty amazing,' but as time carried on, the quick responses apologizing for the wait turned to requests to stop calling for updates.
'It was just really demotivating,' Harris said. 'All I'm doing is filling up an inbox or a voicemail inbox that's probably overflowing (…) like I'm just adding more burden into the healthcare system.'
By 2024, she finally got the call with the surgery date. But after the procedure happened, Harris recalled waking up to hear the procedure became 'too risky.'
'He said he kind of pushed (the bone) to the side (but) he couldn't remove it because it was too close to my carotid artery and cranial facial nerves, and it was just too risky to remove from that approach,' Harris said, adding she was told the bone was left in her neck. 'I never heard of that happening before.'
'It wasn't even about the pain anymore'
She returned home to Windsor after a couple of days, to ensure she'd be well enough. But Harris says five or six days later after the operation, she started coughing up blood.
Harris says she immediately called the paramedics because she couldn't tell if the blood was coming from her surgical site or from her stomach, and they swiftly brought her to the emergency room. But says she waited hours on the gurney, 'throwing up a litre of blood,' while she waited to be admitted to a room.
'Staff was walking by me and everyone was—healthcare workers are all very empathetic and compassionate, but they're just so severely understaffed,' Harris said. Harris says she spent about three nights at Windsor Regional Hospital, profusely bleeding off-and-on throughout her stay and, at one point, pulling out blood clots 'the size of ping pong balls' from her throat.
'I was covered in blood, just covered. I was so mad. It wasn't even about the pain anymore,' Harris said.
She says during her time there, she never met with an appropriate surgeon, adding she was repeatedly told doctors don't want to treat another surgeon's patient after an operation due to liability concerns. So, she was airlifted back to Sinai in Toronto, had CT scans there, and was discharged on Dec. 18.
Karen Harris
Karen Harris being airlifted to Toronto.
Harris says she last saw her surgeon in February this year, where they requested more imaging and confirmed they would carry-on with her surgery again, but this time trying a different approach. She says she still hasn't heard back.
Why is there a delay to get a surgery?
Ontario's surgical backlog grew to more than 245,000 procedures amid the COVID-19 pandemic but has steadily decreased in recent years, as the province has poured millions of dollars into tackling the backlog.
That, however, is of little comfort to patients like Harris.
Isser Dubinsky, a retired clinical physician who had worked in emergency medicine and previously consulted in the development of the wait-time strategy in Ontario, said there's a variety of factors that come into play while waiting for a procedure.
'There's the wait-time to see your family doctor who has to come up with a diagnosis that requires surgery, there's the wait-time from when the family doctor sees or can arrange a referral to a surgeon, and then there's a wait-time from when after that patient sees the surgeon until they get access to surgical care,' Dubinsky said, adding each step is 'integral' to the problem.
Outside of a shortage of family doctors, Dubinsky says they're not providing the same number of in-person office hours as they had before the pandemic with several patients being met online, mitigating against their ability of conducting physical exams and potentially leading to 'reasonable skepticism' from the surgeon when they don't have all of the given information they need.
'There's also a huge amount of fractionation of family medicine,' Dubinsky adds, as some family doctors don't fit the traditional role of what a family physician is. 'There are family doctors who only practice psychotherapy, there are family doctors who largely practice emergency medicine (…) and so on, so the number of family physicians who are providing what you or I might have thought of as comprehensive primary care is diminished.'
Then when it comes to getting from a family physician to a surgeon, Dubinsky says surgeons will want to know what the patient's imaging has shown, which means various tests need to be arranged before a specialist will see them.
Once tests have been completed and a patient is off to see a surgeon, Dubinsky says they follow clear guidelines for what an appropriate time is to wait for a procedure to be done—which is gauged on a patient's symptoms and physical findings. Dubinsky also says time is wasted in the operating rooms, which can stem from a doctor showing up just 15 minutes late.
'Let me give you the arithmetic example of your average community-sized hospital in Ontario that has six operating rooms functioning. If each of those six operating rooms starts 10 minutes late every day, that's an hour of time that's wasted every day, that's five hours a week, that's 260 hours a year. That's enough time to do 100 hip or knee replacements,' Dubinsky said, adding on top of that, surgeons have allocated operating room time, which can vary per doctor.
A spokesperson for Ontario's Ministry of Health says the province has 'some of the shortest wait times' across Canada, with nearly 80 per cent of people receiving their procedure in the clinically recommended amount of time.
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