{"id":345,"date":"2024-09-06T09:00:00","date_gmt":"2024-09-06T09:00:00","guid":{"rendered":"https:\/\/medical-article.com\/?p=345"},"modified":"2024-09-06T09:00:00","modified_gmt":"2024-09-06T09:00:00","slug":"thanks-to-reddit-a-new-diagnosis-is-bubbling-up-across-the-nation","status":"publish","type":"post","link":"https:\/\/medical-article.com\/?p=345","title":{"rendered":"Thanks to Reddit, a New Diagnosis Is Bubbling Up Across the Nation"},"content":{"rendered":"

In a video posted to Reddit this summer<\/a>, Lucie Rosenthal\u2019s face starts focused and uncertain, looking intently into the camera, before it happens.<\/p>\n

She releases a succinct, croak-like belch.<\/p>\n

Then, it\u2019s wide-eyed surprise, followed by rollicking laughter. \u201cI got it!\u201d the Denver resident says after what was her second burp ever.<\/p>\n

\u201cIt\u2019s really rocking my mind that I am fully introducing a new bodily function at 26 years old,\u201d Rosenthal later told KFF Health News while working remotely, because, as great as the burping was, it was now happening uncontrollably. \u201cSorry, excuse me. Oh, my god. That was a burp. Did you hear it?\u201d<\/p>\n

Rosenthal is among more than a thousand people who have received a procedure to help them burp since 2019 when an Illinois doctor first reported the steps<\/a> of the intervention in a medical journal.<\/p>\n

The inability to belch can cause bloating, pain, gurgling in the neck and chest, and excessive flatulence as built-up air seeks an alternate exit route. One Reddit user described<\/a> the gurgling sound as an \u201calien trying to escape me,\u201d and pain like a heart attack that goes away with a fart.<\/p>\n

The procedure has spread, primarily thanks to increasingly loud rumblings in the bowels of Reddit<\/a>. Membership in a subreddit for people with or interested in the condition has ballooned to about 31,000 people, to become one of the platform\u2019s larger groups.<\/p>\n

Since 2019, the condition has had an official name<\/a>: retrograde cricopharyngeus dysfunction, also known as \u201cabelchia\u201d or \u201cno-burp syndrome.\u201d The syndrome is caused by a quirk in the muscle that acts as the gatekeeper to the esophagus, the roughly 10-inch-long muscular tube that moves food between the throat and the stomach.<\/p>\n

The procedure to fix it involves a doctor injecting 50 to 100 units of Botox \u2014 more than twice the amount often used to smooth forehead wrinkles<\/a> \u2014 into the upper cricopharyngeal muscle.<\/p>\n

Michael King<\/a>, the physician who treated Rosenthal, said he hadn\u2019t heard of the disorder until 2020, when a teenager, armed with a list of academic papers found on Reddit, asked him to do the procedure.<\/p>\n

It wasn\u2019t a stretch. King, a laryngologist with Peak ENT and Voice Center, had been injecting Botox in the same muscle to treat people having a hard time swallowing after a stroke.<\/p>\n

Now he\u2019s among doctors from Norway to Thailand listed on the subreddit, r\/noburp<\/a>, as offering the procedure. Other doctors, commenters have noted, have occasionally laughed at them or made them feel they were being melodramatic.<\/p>\n

To be fair, doctors and researchers don\u2019t understand why<\/a> the same muscle that lets food move down won\u2019t let air move up.<\/p>\n

\u201cIt\u2019s very odd,\u201d King said.<\/p>\n

Doctors also aren\u2019t sure<\/a> why many patients keep burping long after the Botox wears off after a few months. Robert Bastian<\/a>, a laryngologist outside of Chicago, named the condition and came up with the procedure. He estimates he and his colleagues have treated about 1,800 people, charging about $4,000<\/a> a pop.<\/p>\n

\u201cWe hear that in Southern California it\u2019s $25,000, in Seattle $16,000, in New York City $25,000,\u201d Bastian said.<\/p>\n

Because insurance companies viewed Botox charges as a \u201cred flag,\u201d he said, his patients now pay $650 to cover the medication so it can be excluded from the insurance claims.<\/p>\n

The pioneering patient is Daryl Moody, a car technician who has worked at the same Toyota dealership in Houston for half his life. The 34-year-old said that by 2015 he had become \u201cdesperate\u201d for relief. The bloating and gurgling wasn\u2019t just a painful shadow over his day; it was cramping his new hobby: skydiving.<\/p>\n

\u201cI hadn\u2019t done anything fun or interesting with my life,\u201d he said.<\/p>\n

That is, until he tried skydiving. But as he gained altitude on the way up, his stomach would inflate like a bag of chips on a flight.<\/p>\n

\u201cI went to 10 doctors,\u201d he said. \u201cNobody seemed to believe me that this problem even existed.\u201d<\/p>\n

Then he stumbled upon a YouTube video<\/a> by Bastian describing how Botox injections can fix some throat conditions. Moody asked if Bastian could try it to cure his burping problem. Bastian agreed.<\/p>\n

Moody\u2019s insurance considered it \u201cexperimental and unnecessary,\u201d he recalled, so he had to pay about $2,700 out-of-pocket.<\/p>\n

\u201cThis is honestly going to change everything,\u201d he posted on his Facebook page in December 2015, about his trip to Illinois.<\/p>\n

The year after his procedure, Moody helped break a national record for participating in the largest group of people to skydive together while wearing wingsuits, those getups that turn people into flying squirrels. He has jumped about 400 times now.<\/p>\n

People have been plagued by this issue for at least a few millennia. Two thousand years ago, the Roman philosopher Pliny the Elder described<\/a> a man named Pomponius who could not belch. And 840 years ago, Johannes de Hauvilla included the tidbit<\/a> in a poem, writing, \u201cThe steaming face of Pomponius could find no relief by belching.\u201d<\/p>\n

It took a few more centuries for clinical examples to pop up. In the 1980s, a few<\/a> case reports<\/a> in the U.S. described people who couldn\u2019t burp and had no memory of vomiting. One woman, doctors wrote, was \u201cunable to voluntarily belch along with her childhood friends when this was a popular game.\u201d<\/p>\n

The patients were in a great deal of pain, though doctors couldn\u2019t find anything wrong with their anatomy. But the doctors confirmed using a method called manometry<\/a> that patients\u2019 upper esophageal sphincters simply would not relax \u2014 not after a meal of a sandwich, glass of milk, and candy bar, nor after doctors used a catheter to squirt several ounces of air beneath the stubborn valve.<\/p>\n

Andr\u00e9 Smout<\/a>, a gastroenterologist at the University of Amsterdam in the Netherlands, said he read those reports when they came out.<\/p>\n

\u201cBut we never saw the condition, so we didn\u2019t believe that it existed in real life,\u201d he said.<\/p>\n

Smout\u2019s doubts persisted until he and colleagues studied a small group<\/a> of patients a few years ago. The researchers gave eight patients with a reported inability to burp a \u201cbelch provocation\u201d in the form of carbonated water, and used pressure sensors to observe how their throats moved. Indeed, the air stayed trapped. A Botox injection resolved their problems by giving them the ability to burp, or, to use an academic term, eructate<\/a>.<\/p>\n

\u201cWe had to admit that it really existed,\u201d Smout said.<\/p>\n

He wrote this summer in Current Opinion in Gastroenterology<\/a> that the syndrome \u201cmay not be as rare as thought hitherto.\u201d He credits Reddit with alerting patients and medical professionals to its existence.<\/p>\n

But he wonders how often the treatment might cause a placebo effect. He pointed to studies finding that with conditions such as irritable bowel syndrome, 40% or more of patients who receive placebo treatment feel their symptoms improve<\/a>. Awareness is also growing about \u201ccyberchondria,\u201d when people search desperately online for answers to their ailments \u2014 putting them at risk of unnecessary treatment<\/a> or further distress<\/a>.<\/p>\n

In Denver, Rosenthal, the new burper, is open to the idea that the placebo effect could be at play for her. But even if that\u2019s the case, she feels much better.<\/p>\n

\u201cI felt perpetual nausea, and that has subsided a lot since I got the procedure done,\u201d she said. So has the bloating and stomach pain. She can drink a beer at happy hour and not feel ill.<\/p>\n

She\u2019s pleased insurance covered the procedure, and she\u2019s getting a handle on the involuntary burping. She cannot, however, burp the alphabet.<\/p>\n

\u201cNot yet,\u201d she said.<\/p>\n

KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/p>\n

USE OUR CONTENT<\/h3>\n

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In a video posted to Reddit this summer, Lucie Rosenthal\u2019s face starts focused and uncertain, looking intently into the camera, before it happens. She releases a succinct, croak-like belch. Then, it\u2019s wide-eyed surprise, followed by rollicking laughter. \u201cI got it!\u201d the Denver resident says after what was her second burp ever. \u201cIt\u2019s really rocking my…<\/p>\n","protected":false},"author":0,"featured_media":346,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[],"class_list":["post-345","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-articles"],"_links":{"self":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/posts\/345"}],"collection":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=345"}],"version-history":[{"count":0,"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/posts\/345\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/media\/346"}],"wp:attachment":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=345"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=345"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=345"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}