A Nova Scotia woman is raising awareness of her condition that she says has left her unable to burp for her entire life, until a recent medical procedure in Chicago offered her some relief.
Shackleton, 26, says she lives with a rare condition called Retrograde Cricopharyngeus Dysfunction (R-CPD).
“So, basically what that means is I can’t burp and I never could,” said Shackleton, who’s from Grand Lake, N.S, which is a suburb in Halifax.
“I just thought I was weird and couldn’t burp growing up.”
It wasn’t until Shackleton was in her late teens when she started noticing symptoms, including bloating, abdominal pain and nausea.
“Wearing normal clothes that fit was difficult because in the morning I’d be normal sized for me and at the end of the day I would look six months pregnant,” she said.
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Shackleton says it’s also impacted her socially, as going out and having several drinks with friends simply wasn’t possible.
“The only way to get that air out is to force yourself to throw up,” she explained. “Everybody knows as soon as you start throwing up in a bathroom, they kick you out and you got to go home.
“Whereas that’s not the case, I just need to burp.”
After years of being prescribed medications that didn’t offer relief, Shackleton went looking for answers online, where she met a long list of other people around the world also unable to burp.
One of those people pointed her in the direction of Dr. Robert Bastian of the Bastian Voice Institute in Chicago, who’s one of the only doctors in North America who injects Botox into the throats sphincter to allow the muscle to work properly.
“Three out of five people keep the ability to burp permanently even though the Botox is gone. It’s sort of like Botox serves as training wheels for burping,” Dr. Bastian said in a Zoom interview with Global News on Thursday.
“So if that’s the case, I think it’s worth that little extra trouble and expense to make sure that (the sphincter) is really targeted, because I really want it to be once and done.”
The procedure that Dr. Bastian provides is not available in Nova Scotia. Global News reached out to Nova Scotia Health for an interview but the request was decline.
Nova Scotia Health did, however, provide several statements from retired gastroenterologist Dr. Geoffrey Turnbull, who practiced for 35 years and said he’s never seen a case of R-CPD.
“I discussed this with a motility expert in Ontario with over 35 years of clinical experience,” one of the statements from Dr. Turnbull reads. He knew of the condition as well but had never seen a case either.
In one of his statements, Dr. Turnbill also warned of the risks associated with injecting Botox into the cricopharyngeus (CP) muscle due to its “possibly injecting the vocal cords that are also in that area of the throat and could cause paralysis of the vocal cords.”
“You don’t have to worry about that,” Dr. Bastian said in response to the statement. “If you’re able to see a target well, there’s no concern. We have a few with some minor voice change but I think it’s temporary. But no, no risk.”
Dr. Bastian treated his first R-CPD patient in 2015 and has treated nearly 500 others since. Shackleton was lucky enough to have her procedure paid for by Vancouver businessman Andrew Wilkinson, who also has R-CPD.
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He was not made available for an interview, but Shackleton says he offered to cover her treatment as he too knows the pain that comes with the condition.
She travelled to Chicago on March 14 and has already returned to Nova Scotia and completed her 14 days of isolation.
“It’s really important for me to get this information out because I know how painful it is for me to live with this condition, how socially awful it is to grow up and be in your 20s and not be able to go out,” said Shackleton.
“It’s not rare, even though doctors will say it is. It’s a lot more common that I think what we’re even discussing.”
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