REGINA - Mackenzie Wagman, a father to two young children, used to be an active person, including playing sports. However, his life changed drastically after finding out he has Bertolotti syndrome, a congenital disorder that causes back pain, with no known treatment available in Canada.
Wagman first started dealing with pain after he was injured while working in 2020. After seeing doctors and therapists and taking medication, nothing was working for him.
Eventually, Wagman went for an X-ray, where he noticed one side of his spine seemed different than the other.
Considering multiple doctors had seen the X-rays beforehand, Wagman was confused about how "something as obvious as that could have been missed."
Another X-ray revealed that Wagman had pseudoarticulation, which causes biomechanical stress.
After discovering this, Wagman went on to Google to find out more about what he was dealing with. Through his findings, Wagman discovered a surgeon in New York who specializes in the condition.
So, Wagman sent the surgeon in New York his imaging. The surgeon later tells him he has a condition called Bertolotti syndrome.
Bertolotti syndrome is caused by the transverse process of the fifth lumbar vertebra that articulates with the sacrum, which results in abnormal spinal mobility.
Despite Wagman having a clear diagnosis from one surgeon in the U.S., the one he was dealing with back home said there was nothing wrong with him.
Hearing that, Wagman said, "that was a pretty big hit, like thinking that you have some answers. But now I don't have anybody to look into it."
Eventually, Wagman got a local surgeon in Saskatoon who was willing to look into the condition and try out a surgery.
After a week had past since his first surgery, Wagman started to feel "a sharp pain on my right side that I never had before." Feeling this pain, Wagman "kept asking the surgeon 'is there any reason [that] I'd be having this pain on this side,' and he's like 'nope everything looks good your imaging is fine.'
The additional pain didn’t stop for Wagman, so he did a 3D CT scan, where he noticed screw threads sticking through the top of his vertebrae. The local surgeon kept telling Wagman there was nothing wrong with the screws.
Since nothing was improving for Wagman, he decided to get another surgery. Wagman consulted with the surgeon in New York to talk to his local surgeon so they could understand how to perform the procedure correctly this time.
Even with all the discussions, Wagman started to relapse into pain again. The surgeon in New York even told him "the exact same thing [was done] again expecting a different result," when they saw the images.
Wagman felt he was "back at square one with more pain because now I have loose screws in my spine on top of the bones rubbing together."
Since the first two surgeries didn’t work for him, Wagman was left with no choice but to seek surgery in the U.S.
He got his surgeon to request funding from the Ministry of Health for out-of-country coverage. Wagman remembers how supportive his local surgeon was, saying they would do everything to help him. That was until Wagman found out his local surgeon no longer supported him going to the U.S., so his case to get funding was closed by the Ministry of Health.
In that moment, Wagman called it "very disheartening." He added, "you feel so defeated and then your mind goes [to] like what influence did he have to totally 100 per cent flip on what he was doing before?"
The reason Wagman needs coverage is the cost of the surgery in New York is approximately $180,000 CAD. Even if other places in the U.S. would be cheaper, they would still cost over $100,000 CAD, which Wagman doesn’t have nearly enough for.
Hoping to receive help, Wagman has been reaching out to politicians across Sask. and Canada over the past few years., including Premier Scott Moe, asking if he can talk to them and share his story.
Wagman has been told consistently, "a reply is forthcoming." He feels "they will not let me have the meeting [or have a chat with them]. [They] pass you on to someone else or Just tell you [a] replies forthcoming, hoping that you'll just give up and [that] they'll never have to deal with it. It's personally [just] what I think happens."
The only response Wagman received was when his partner reached out to Sask. Minister of Health Jeremy Cockrill who replied in an email, "neither our government nor the Ministry get involved in decisions regarding patient care."
Cockrill went on to write it’s up to the physician to provide information or options, including receiving healthcare outside of Canada.
Even though Wagman hasn’t gotten the response he wants, that doesn’t mean he’s giving up.
Wagman is hoping the government can "hire somebody here who is trained under somebody who has dealt with the condition many times before, which is not a crazy ask to have somebody here who can treat something [like this]. If we don't have that [option], I would like to go to the States and have this done."
He also acknowledged the countless people in Canada who are dealing with the same condition. One of those people is Ryan Law, who Wagman speaks to constantly.
"It's nice to have somebody that you can talk to who is actually dealing with a very similar thing because not a lot of people here know what we're going through and what we're trying to do to get help and to possibly be able to help other people," he said.
Currently, Wagman is also considering starting a GoFundMe again to raise money or potentially do a fundraiser as well.
When asked what it would mean to get his life back to normal, Wagman said, "It's actually tough to think of what life could be like because I've gone through multiple surgeries already thinking that would be the case, and they both failed."
Wagman later said it would mean everything to get his life back to normal, as he’s missed out on so many memories with his children and partner.
