Thanks to Reddit, a new diagnosis is emerging across the country

In a video posted to Reddit this summer, Lucie Rosenthal’s face starts out focused and unsure, staring into the camera, before it happens.

She emits a succinct, croaking belch.

Then, a wide-eyed surprise, followed by a gleeful laugh. “I got it!” says the Denver resident after what was her second burp ever.

“I’m really surprised that I’m introducing a new bodily function at 26 years old,” Rosenthal later told KFF Health News while working remotely, because as good as burping was, it was now happening uncontrollably. “I’m sorry, excuse me. Oh my gosh. That was a burp. Did you hear that?”

Rosenthal is among more than 1,000 people who have received a procedure to help them burp since 2019, when an Illinois doctor first reported the steps of the procedure in a medical journal.

The inability to burp can lead to bloating, pain, gurgling in the neck and chest, and excessive flatulence as the pent-up air seeks an alternative exit route. One Reddit user described the gurgling as an “alien trying to escape me” and pain like a heart attack that goes away with a fart.

The procedure has spread, largely thanks to the growing rumours in the depths of Reddit. Membership on a subreddit for people with or interested in the disease has grown to around 31,000 people, making it one of the largest groups on the platform.

Since 2019, the condition has an official name: retrograde cricopharyngeal dysfunction, also known as “abelchia” or “no-burp syndrome.” The syndrome is caused by a quirk in the muscle that acts as the gatekeeper of the esophagus, the muscular tube about 25 centimeters long that moves food between the throat and the stomach.

The procedure to fix it involves a doctor injecting 50 to 100 units of Botox (more than double the amount typically used to smooth out forehead wrinkles) into the superior cricopharyngeus muscle.

Michael King, the doctor who treated Rosenthal, said he had not heard of the disorder until 2020, when a teenager, armed with a list of academic papers found on Reddit, asked him to perform the procedure.

It was no exaggeration. King, a laryngologist at Peak ENT and Voice Center, had been injecting Botox into the same muscle to treat people who had difficulty swallowing after a stroke.

He is now listed among doctors in Norway and Thailand offering the procedure on the r/noburp subreddit. Other doctors, commenters have noted, have occasionally laughed at them or made them feel like they were being melodramatic.

To be fair, doctors and researchers don’t understand why the same muscle that allows food to go down doesn’t allow air to go up.

“It’s very strange,” King said.

Doctors also aren’t sure why many patients continue to burp long after the Botox wears off after a few months. Robert Bastian, a laryngologist outside Chicago, gave the condition its name and devised the procedure. He estimates that he and his colleagues have treated about 1,800 people, charging about $4,000 per treatment.

“We hear in Southern California it’s $25,000, in Seattle it’s $16,000, in New York City it’s $25,000,” Bastian said.

Because insurance companies considered the Botox charges a “red flag,” she said, her patients now pay $650 to have the drug covered so it can be excluded from insurance claims.

The pioneering patient is Daryl Moody, an auto technician who has worked at the same Toyota dealership in Houston for half his life. The 34-year-old said that in 2015 he was “desperate” for relief. The swelling and gurgling weren’t just a painful shadow over his day; they were also keeping him from his new hobby: skydiving.

“I hadn’t done anything fun or interesting with my life,” he said.

That was until he tried skydiving, but as he gained altitude, his stomach swelled like a bag of chips on a flight.

“I went to ten doctors,” she said. “No one seemed to believe that this problem even existed.”

The bloating from the inability to burp was painful and interfered with Daryl Moody’s hobby of skydiving. Moody was the first known person to receive a Botox injection for a burping problem.(Todd Jr. Tribe)

He then came across a YouTube video of Bastian describing how Botox injections can fix some throat problems. Moody asked if Bastian could try it to cure his burping problem. Bastian agreed.

Moody’s insurance deemed it “experimental and unnecessary,” he recalled, so he had to pay about $2,700 out of pocket.

“This is honestly going to change everything,” she posted on her Facebook page in December 2015, about her trip to Illinois.

The year after her surgery, Moody helped set a national record by being part of the largest group of people to skydive together using wingsuits, the kind that turn people into flying squirrels. She has jumped about 400 times so far.

This problem has plagued people for at least a few millennia. Two thousand years ago, the Roman philosopher Pliny the Elder described a man named Pomponius who could not belch. And 840 years ago, Johannes de Hauvilla included the fact in a poem, writing: “Pomponius’ steaming face could not find relief in belching.”

It took several centuries for clinical examples to appear. In the 1980s, some case reports in the US described people who were unable to burp and could not remember vomiting. One woman, the doctors wrote, was “unable to voluntarily burp along with her childhood friends when this was a popular game.”

The patients were in severe pain, although doctors could find nothing abnormal in their anatomy. However, doctors confirmed using a method called manometry that the patients’ upper esophageal sphincters simply would not relax, either after a meal consisting of a sandwich, a glass of milk and a chocolate bar, or after doctors used a catheter to introduce several grams of air under the stubborn valve.

André Smout, a gastroenterologist at the University of Amsterdam in the Netherlands, said he read those reports when they came out.

“But we never saw that condition, so we didn’t believe it existed in real life,” he said.

Smout’s doubts persisted until he and his colleagues studied a small group of patients a few years ago. The researchers gave eight patients who supposedly couldn’t burp a “burp provocateur” in the form of carbonated water and used pressure sensors to watch how their throats moved. Indeed, air was trapped. An injection of Botox solved their problems by giving them the ability to burp — or, to use an academic term, belch.

“We had to admit that it really existed,” Smout said.

This summer, he wrote in Current Opinion in Gastroenterology that the syndrome “may not be as rare as previously thought.” He credits Reddit with alerting patients and medical professionals to its existence.

But he questions how often treatment can cause a placebo effect. He points to studies showing that for conditions such as irritable bowel syndrome, 40% or more of patients given placebo treatment feel their symptoms improve. There is also growing awareness of “cyberchondria,” when people desperately search the Internet for answers to their ailments, putting them at risk of unnecessary treatment or further suffering.

In Denver, Rosenthal, the new burper, is open to the idea that the placebo effect might be playing a role in her case. But even if that were the case, she feels much better.

“I had constant nausea, but that has decreased a lot since I had the procedure,” she said. So has the bloating and stomach pain. She can drink a beer at happy hour and not feel sick.

She is glad that insurance covered the procedure and is getting the involuntary burps under control. However, she cannot burp the alphabet.

“Not yet,” she said.

Related Topics

Contact Us Send us a story suggestion



Source link