A New Brunswick man says he had no choice but to get back surgery in the United States to treat excruciating pain, but despite letters from two specialized doctors saying there are no Canadian surgeons able to treat his condition, New Brunswick Medicare has refused to pay for his out-of-country procedure.
“Hopeless, frustrated, angry, gaslit,” said Ryan Barrie, 35, when he described receiving the province’s rejection letter.
The Fredericton man’s pain began about two years ago after he felt a pop in his back following a cough. It got progressively worse, so he tried physiotherapy and sought out X-rays and a private MRI in Moncton.
However, none of those tests were able to identify the problem.
“When you’re dealing with chronic pain, you’re like overshadowed by this cloud,” said Barrie, who is a drummer. “It just takes a lot of joy out of things.”
Over the months, he said he’s been referred to three plastic surgeons, an orthopeaedic spine surgeon and a chronic pain specialist. None was able to help and his family doctor advised him to seek care out of the country.
In April of this year, he met with a specialist from the Canadian Spine Institute in Quebec on the advice of his chiropractor, who diagnosed him with cluneal neuralgia, a type of neuropathic pain caused by the compression of the cluneal nerves.
“He said, ‘I’ve dealt with 30,000 patients, and I’ve talked to maybe five with your condition,'” Barrie recalled the specialist, Dr. Jeff Golan, telling him. “So, not very hopeful.”
According to a letter from Golan, which Barrie provided to Global News, he didn’t know of any surgeons in Canada who could treat the condition.
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In the letter, Golan stated he doesn’t specialize in Barrie’s condition, and that he had contacted two plastic surgeons in Quebec, neither of whom were aware of any specialists in that province with experience treating cluneal neuralgia.
“Following further research, I discussed Ryan’s case with Dr. Alvin Jones, who is based in Cincinnati, Ohio and has experience treating (the) condition,” the letter continued.
Yet, New Brunswick Medicare rejected his application to cover the cost of the American procedure.
In a letter dated July 28, the medical consultant said the province had consulted Canadian counterparts regarding out-of-country services for other patients with this condition.
“Their unanimous reply was that the condition in question can be treated in Canada by either general, plastic, orthopaedic or neurosurgeons and was only a question of finding a specialist who would be willing to perform the surgery,” the letter stated, adding that none of the jurisdictions would approve payment for an out-of-province surgery.
“When I got the rejection letter, I called my mother, told her the bad news. And she’s like, ‘Well, we’ve got to do it anyway. We’ll figure it out. It’s expensive, but it’s your health, it’s your life,'” said Barrie.
Barrie said he felt he had exhausted his options, so he travelled to Ohio and received the procedure in early November, which cost nearly $30,000.
“It was the first time that a surgeon was like, ‘Yes, I’m familiar with this.’ And I had some hope at that point,” he said.
In a letter dated Dec. 15, Golan said Barrie received right-sided superior cluneal nerve compression in Ohio and that the “results to date have been very positive, and he is progressing well toward a full recovery.”
“While it is unfortunate that Ryan was required to seek care outside of his province for this highly specialized surgical procedure, there was no reasonable alternative available locally,” Golan wrote.
Dr. Alvin Jones, the pediatric orthopedic surgeon at the Cincinnati Children’s Hospital Medical Center who performed his surgery, submitted an update after Barrie’s operation.
The doctor wrote that he studies the “lesser-known chronic back pain condition called superior cluneal nerve entrapment syndrome” and is the “only physician in the western hemisphere that performs this procedure.”
In a report dated Dec. 11, Jones detailed the success of the surgery and noted Barrie was on the road to “full recovery” and would be cleared to “test out drumming, your profession, at 6 weeks from the surgery.”
‘Army behind me’
To help cover the cost, Barrie’s musician friends are planning a fundraiser at The Cap on Sunday. A GoFundMe campaign has already raised more than $17,000.
“Everyone in the scene is just kind of rallying together to help raise the funds to get that debt off of his back,” said his friend, Sean Hutchins.
Barrie said he’s touched by the “army behind me” who are helping him financially.
In the meantime, he’s appealing New Brunswick Medicare’s decision.
“I contribute to society. I have a great job, a job that I really enjoy. Pay my taxes. You expect to be supported and especially when I’m doing the leg work, like here’s the proof, read it, understand it,” he said.
“I just don’t know how they can dispute it. I’ll appeal it and the worst that can happen is they say no, but they’ll be educated about it.”
Global News reached out to the province’s Department of Health for comment but didn’t receive a response by deadline.
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