Retrograde cricopharyngeus dysfunction: A Canadian experience fueled by social media

In 2019, a constellation of symptoms was codified as a new diagnosis entitled retrograde cricopharyngeus dysfunction (R-CPD) by Bastian et al. ¹ This presentation had previously been described in case reports without a diagnosis by Kahrilas et al. in 1987, Waterman and Castell in 1989, and Tomizawa et al. in 2001.^2–4 The unifying feature of these individuals was a complete inability to belch.

The first case series reported 51 patients with R-CPD treated with botulinum toxin injection into the cricopharyngeus muscle. ¹ Almost universally, the clinical features included the inability to belch, abdominal bloating, discomfort, nausea or chest pain mainly after meals, loud gurgling noises, and flatulence. Patients experienced symptom improvement soon after injection and all gained the ability to belch. Although laryngeal botulinum toxin injection is generally expected to last four months, 80% of patients in this series benefited for at least six months. ⁵ Partial cricopharyngeal myotomy by rigid esophagoscopy and CO₂ laser has been described in one case of recurrent R-CPD after botulinum toxin injection failure with good results at 6 months. ⁶

These first patients traveled to the Bastian Voice Institute from over 20 states and three foreign countries after viewing patient testimonials via social media.^1,7 Generally, the patients searched online in desperation as they had previously seen other physicians and undergone several investigations with normal results, yet remained without a diagnosis. A high volume of patients diagnosed and treated with R-CPD stemmed from social media posts on Reddit. The subreddit, identified as “r/noburp,” was created in 2014 and now has over 22 000 subscribers with 4700 new members in the last year. ⁸ Traffic statistics report 11 new posts and 51 new comments each day, with the most popular submission receiving over 1600 “upvotes” in support. Subsequently, other online forums for information and support groups formed, including TikTok posts, a Facebook support group, YouTube videos, blogs, and more. A popular TikTok video reached 1.7 million views and lead to a huge spike in traffic on the Reddit page, causing the number of page views to rise from approximately 5000 to almost 15 000 per day. ⁹

In the numerical era, social media has emerged as a novel patient education tool. While lack of quality control and variable reliability of published content remains an issue, social media has multiple purported benefits including enhanced patient engagement and health literacy. ¹⁰ Over 70% of Americans use social media daily, comprised of 84% of young adults aged 18–29 as compared to 45% of adults aged 65 or greater. ¹¹ Studies have shown 60–80% of patients search online for support, education, or physician recommendations when they have a medical concern.^12,13

Our institution has just treated our sixth R-CPD patient since the first case presented in 2021 (Table 1). Our first patient had learned of R-CPD while searching her symptoms broadly on the internet. She found “r/noburp” and interacted with others with similar symptoms, some already having undergone treatment. Due to the COVID-19 travel ban, this first patient in Quebec, Canada, presented to the McGill University Voice and Dysphagia Laboratory. She underwent diagnosis and treatment of R-CPD and expressed her satisfaction on the online forum. Her initial posts described her excitement of finding a surgeon in Montreal who understands and is able to treat her condition. Ten days after her injection, she posts online that “…I have a few uncontrolled burps everyday now! However, I still have gurgles and I can rarely manage to make them come out as burps…” Several months later, she closed the loop by writing “… [original in French] I received a second injection with a higher dose and now everything is sorted… it changed my life, I feel better!”

Table 1:

Summary of Patients Diagnosed with R-CPD. (G Scope = Gastroscopy; NPL = Nasopharyngolaryngoscopy; OR = Operating Room; PMHX = Past Medical History).

Case	Age at diagnosis	Symptoms:	Initial presentation	PMHx	Workup	NPL	OR information
1	23 female Last follow-up June 2022	Inability to belch her whole life. Extreme bloating and discomfort after eating. Worse as the day wears on. Occasionally makes herself gag to make air come out.	June 18, 2021	None	Barium swallow - normal Manometry - normal G scope - normal	Normal	October 10, 2021—50U April 25, 2022—90U
2	35 female Last follow-up September 2022	Inability to belch since birth. Bloating after eating that worsens throughout the day.	July 13, 2021	None	Barium swallow - normal MRI neck (June 2022) (unrelated request)—normal	Normal	November 23, 2021—60U August 8, 2022—100U September 26, 2022—100U
3	27 female Last follow-up June 2022	Inability to belch. Bloating after meals, worse with carbonated beverages. Unable to expel gases resulting in epigastric pain.	November 11, 2021	None	None	Mild post-cricoid edema	March 21, 2021—50U
4	24 male Last follow-up September 2022	Inability to belch since childhood. Daily bloating after meals. Croaking noises. Vomiting. Abdominal pain. Activity intolerance.	April 20, 2022	None	G Scope	Normal	May 4, 2022 – 75U August 24, 2022 – 80U
5	30 female Last follow-up December 2022	Inability to belch her whole life	September 27, 2022	None	None	Normal	November 21, 2022—100U
6	32 male Last follow-up December 2022	Inability to belch. Excessive abdominal distension lasting several hours after meals. Gurgling sounds in throat.	October 6, 2022	None	G Scope	Normal	December 12, 2022—100U

Another patient described his tortuous journey after self-diagnosing his R-CPD while viewing another patient’s YouTube video. He was referred to our institution and underwent initial and repeat botulinum toxin injections with complete symptom relief. His latest “r/noburp” post confirmed that he is “…happy for this victory. [Not to] be bloated at night or even in the morning is amazing!”

Our observations and experience highlight how increased patient awareness and self-advocacy, paralleled by physicians’ willingness to learn and develop novel expertise, has the potential to have an enormous impact on dissemination of information and patient quality of life. The application of knowledge and skills within a laryngologist’s therapeutic armamentarium allowed development a local expertise in managing this condition. Another one of our patients shared that she is so pleased to have found a surgeon in her province because “access to trustworthy physicians close to home is most reassuring.”

This research was approved by the Institutional Review Board at the McGill University Health Centre (REB 2023-8293).