You may have said it jokingly: Some part of your body was hurting so much that you wished you could cut it off.
Kathy Vail did just that.
The Prince Edward Island woman spent seven years in agony after a seemingly minor foot injury led to “excruciating pain.” At times, she rated the pain as a 25 on a scale of one to 10.
“It got progressively worse and worse and worse. The pain level was getting higher,” she said during an interview with CBC News at her Morell home. “I was taking more medications, more pain pills, which I definitely did not want to do, but had to if I wanted to function on a daily basis.”
The pain burned. It stabbed. It was occasionally so bad that she said she couldn’t even talk when asking medical staff for help. And no drug, nerve block or manipulation that doctors tried led to any lasting relief.
So when a doctor eventually told her that amputating her right leg had a 70 per cent chance of eliminating the pain, she took it seriously.
After seven years of debilitating pain that never went away, Kathy Vail made the decision to amputate her leg. CBC’s Taylor O’Brien spoke with Vail and her husband about her journey with complex regional pain syndrome, and how she’s ready to start living the way she used to.
“Many, many times during a flare-up, she would say to me, ‘Just cut it off, just go get the saw and cut it off,’ because it was so bad,” her husband, Tom Vail, said.
“Like, the pain was just unrelenting. No comfort at all.”
‘Nothing was broken’
Kathy Vail was suffering from complex regional pain syndrome, or CRPS. It’s an invisible inflammatory condition, usually affecting one limb and typically occurring after an injury, stroke or heart attack. Patients experience joint stiffness, swelling, muscle spasms and other symptoms related to the nerves and circulatory system.
“It is a unique diagnosis, because there isn’t a single test for medical professionals to identify the condition,” said Mandy Fraser, a registered physical therapist and counselling therapist on P.E.I.
“So it is a challenging one for that reason, because there’s multiple things that need to be gathered as far as information to come up with this diagnosis.”
For Vail, getting that diagnosis took years, after a fire extinguisher fell off the inside wall of a van and landed on her right ankle while she was at work looking after children with special needs. The date was Sept. 25, 2018.
“I didn’t really think too much of it at the time — I wasn’t even going to go to the hospital,” she said.
But she stopped off at her husband’s workplace in Donagh and he made her go to the emergency room.
“I had many X-rays that day and nothing was broken,” she said. “They just had said to go home and rest because it was swollen and bruised and … it was pretty sore at the time.”
Ethan Belcourt has complex regional pain syndrome, a chronic and rare condition that isn’t easily treated. Belcourt is on long-term disability and for the most part has to stay home because of excruciating pain.
The pain persisted, and got worse, so she kept looking for answers. An MRI finally revealed that she had sustained a torn tendon in her ankle, so she was scheduled for surgery to repair that.
“This was three years into the whole process,” she said.
She had continued to work as an educational assistant for a while “because I absolutely, positively loved my job with these children.” But by the time she had the MRI, heading into the COVID-19 pandemic shutdown, she had been placed on permanent medical disability because of the pain that flared up time and time again, leaving her a wreck.
“The pain was always there to begin with,” said Tom Vail. “And, you know, I’ve had enough injuries. I know they usually go away after a few weeks and things are good. But when they did find that little tear in the tendon, we were very hopeful that was going to be the end of it.”
Kathy Vail was desperate to get back to her version of normal.
“I was a very active person. I went to the gym five days a week…. I just love exercising and I also love walking and running,” she said. “So those were two things also that I love to do that very slowly were taken away from me.”
Losing physical ability often has a psychological impact, Fraser said.
“It leads them to a sense of helplessness and hopelessness, which kind of feeds into, you know, depressed and low moods,” Fraser said. “You start ending up with people with anxiety about, you know, their kids, their future, their employment.”
Flare-ups came on suddenly
The family’s hopes were high leading into the tendon surgery. But Vail’s doctor did caution her that there was a “less than one per cent chance you can develop CRPS from this surgery,” she said.
The official diagnosis of complex regional pain syndrome followed a second surgery to deal with continuing pain, said Tom Vail.
There’s been so many trials of treatments … Some of them made it worse, unfortunately, and it just — everything spiralled downwards.— Tom Vail
“It’s just been a roller coaster since then,” he said. “There’s been so many trials of treatments. It started with the ketamine therapy. It went to a spinal cord stimulator implant, Beirs treatment … there were so many sympathetic nerve blocks and other things like that that were attempted but never made it any better.
“Some of them made it worse, unfortunately, and it just — everything spiralled downwards.”
Kathy Vail said the physical pain was aggravated by the fact that many people couldn’t understand how a small injury could really cause that much grief, which she called “very, very hard on my head.”
A flare-up could come on suddenly. Her husband remembers having to ask another man to help carry her out of church when one struck during a service. Vail herself recalls not being able to speak through her pain during one hospital visit.
Heating pads were a small comfort, as was spending time with her baby grandson, now 18 months old, and connecting with her twin granddaughters in Ottawa. And she is quick to give credit to supportive friends and her “very, very caring team of doctors.”
She took pain medications, but some didn’t make a dent during the worst flare-ups. The powerful drug Dilaudid was the only thing that seemed to work at all. She was reluctant to take it, but the pain left her no choice. Eventually, she needed two doses when a flare-up came.
“Another thing about the CRPS, it’s also known as the suicide disease because there is no cure. So many days I thought, ‘My goodness, like, what am I going to do and how am I going to get through these days? And what’s going to happen to me in years to come?’
“Many days Tommy would come home and I’d be crying and he said, ‘Well, well, what’s wrong?’ And I said, ‘I can’t do it. I just can’t do this.’ And he’s like, ‘Yes, you can. You can do it. You got this far, you can go a little further.’
“Definitely, without his support — I would not be here without that.”
‘There’s one more thing we can do…’
Fraser, who has worked in physiotherapy for more than two decades, said CRPS is especially devastating because, unlike events like childbirth, it has no predictable endpoint. That lack of psychological certainty intensifies suffering.
She said stress and mental health struggles can also heighten pain sensitivity.
“I’ve had clients that have had quite severe symptoms that have led to things like amputation,” she said.
Then came the day the “A-word” was mentioned, by Kathy Vail’s orthopaedic surgeon, Dr. Cai Wadden.
“I’d been in saying, you know, ‘I’m still in pain,’ and … he was just about ready to leave and he had his hand on the door and he said, ‘You know, there’s one more thing we can do.’ And I was like, ‘Really? Like, what’s that?’ And he said, ‘We can amputate.’ And I thought: ‘Oh my goodness.'”
But the idea took hold.
A surgeon who had trained Wadden, Dr. Mark Glazebrook, examined Vail in Halifax in December 2024 and said she would be a perfect candidate for a below-the-knee amputation. Given that the probability of the procedure eliminating the pain was about 70 per cent, he advised her to go home and have a family meeting over Christmas.
“And the kids are like, ‘Mom, you need your life back. You need to get back to what you were, what you used to do.’ And Tommy was of the same mindset as well: ‘We need to do something here.'”
That “something” finally happened on Aug. 25. And the pain is gone.
“It’s so great,” said Tom Vail. “Even in the ICU, I saw, like, on the second or third day, just the brightness in her eyes and the look on her face. It was just so different.”
“It just feels like I’m walking on the world, that I can actually get back and do these things that I so loved doing and that I couldn’t do,” Kathy Vail said. “Now I can do these, and I’m getting my life back.”
She has been working hard at physio, and has gone from an electric wheelchair to a walker while her leg heals enough for a prosthetic.
“She’s wowing everybody around here with what some call determination, I call stubbornness,” said her husband. “It’s just, it’s amazing what she can do.”
Don’t give up. There is a doctor out there who will believe you and a pain specialist who will help you.— Kathy Vail
“I just, I had faith,” she said. “We’re very strong with our faith. And I believe in the power of prayer and I believe that’s what got me through this.”
She wrote a Facebook post a month after her surgery, on the seventh anniversary of that simple mishap with a fire extinguisher.
“I’m now one month post amputation, and the pain is GONE!” it reads in part. “Thank you God! I haven’t had any phantom pain either. There is still some pain in my left leg and hands, but nothing compared to what my right leg had. I’m back at the gym, building strength in preparation for my prosthetic leg in a few weeks.”
Tom Vail also feels pretty good these days.
“We’ve had people comment — even as recently as today — they look at her and they say, ‘The pain is not in your face anymore.’ Like, she always carried that pain in her face. Even though she was smiling, you could still see it.”
Kathy Vail has something to say to people who have gone through a similar experience and think they too might have what Tom calls the “miserable disease” that laid her low.
“Don’t give up,” she said. “There is a doctor out there who will believe you and a pain specialist who will help you….
“Persevere, and have faith.”
