Hi, Everyone! My name is Melody, and I am so glad you are here!
Apparently, it is not normal to not burp. I have lived nearly 3-1/2 decades, and I never once thought “maybe all of my digestive issues are because I can’t burp.” Thankfully, I have a partner that always found it weird and unnerving that I could not burp. He boldly decided that the internet must have evidence of the inability to burp somewhere. So… He googled “inability to burp?”
First, he found a reddit group that has gathered a bunch of people from around the world that all have the same unfortunate ailment as me. He continued to read through several anecdotes of identical experiences to mine.
1.) Constant digestive distress? Check.
2.) Diagnosis of IBS and/or GERD without relief with medication? Check.
3.) Normal medical tests/doctors baffled? Check and check.
Which led me to Dr Robert Bastian with the Bastian Voice Institute. His team specializes in voice, swallowing, and airway disorders. They actually discovered this previously-unknown motility disorder back in 2019. So far (as of Feb. 2025), they have successfully treated over 2,300 people with R-CPD from all 50 states and 28 foreign countries.
So what are my digestive issues? Well, let me lay out a timeline, if that’s okay.
Infancy:
– Colic, gassy
– Often Fussy
Childhood:
– Generally nauseous
– Advised by doctor “excessive air in stomach” due to “bad habit of swallowing air”
– Feeling of heartburn by age 11
– Underweight for age (continued to adulthood)
Early to Late Teen Years:
– Dry cough “due to acid backsplash”
– Noticed “nervous rumbles” (gurgling coming up from the stomach and into the throat) would happen when nervous, uncomfortable, or nauseous
– Diagnosed officially with GERD by doctor
Early 20s:
– Diagnosed with Irritable Bowel Syndrome by doctor
– Began taking medication for GERD
– “Nervous Rumbles” were no longer occasional, but now happening a few times weekly. These “rumbles” can be heard from across a quiet room and become louder if I am speaking or my mouth is open.
Late 20s:
– “Rumbles” are now daily and happening for hours at a time. It is incredibly embarrassing, especially in the workplace.
– GERD and IBS are not well controlled, despite medication for at least five years
Early 30s:
– Stupid COVID happened and paying attention to my digestive issues was the last of my worries. Though depression and anxiety seemed to make stomach acid worse.
A Few Days Before I Turned 34 Years Old (June 28th, 2024):
– I developed sudden pill dysphagia (feeling like my medications were getting stuck in my throat) that absolutely derailed my life
– Leads to Emergency Room visit; received x-ray and told it was “normal” and to have a “bland diet” to “reduce acid in esophagus” until seeing GI Doctor for EGD
After EGD (Sept 19th, 2024):
– No relief for pill dysphagia
– Completely normal EGD
– Advised to follow up with doctor if symptoms persist
At that point… I really just wanted to give up. Maybe I was just broken in a way that was unfixable. Or maybe I was just not focused on the right thing yet…
As time passed, it became more and more obvious to me and my wonderful partner that something was absolutely not right in my throat. In the challenge of taking my daily medicines, I have developed new habits to accommodate. This includes switching when to take some of them, and forgoing other medications all together. Before a year ago, I could take all of my morning medications (six pills) at one time. Now, I struggle to take six pills within an hour’s time. And it is easier to take medicines in the morning; much more difficult at night.
But then Chance, my brilliant partner, insisted it was in my inability to burp. And he was absolutely correct.
On May 14th, 2025, I finally handed over the evidence to an Ear, Nose, and Throat doctor that believed I had an actual problem. With Dr. Bastian’s substantial research, I was able to self-advocate for a referral to the actual Bastian Voice Institute. They happen to practice in my state, making it much cheaper, with insurance, to cover the procedure.
Unfortunately, even with insurance, it’s going to cost around $4,300 for the procedure. This includes the travel costs required to get to Downers Grove, IL, and one night’s stay in a hotel near the outpatient facility.
I will have my initial appointment (in person) with Dr. Bastian’s Voice Institute on July 28th, 2025. My procedure for the R-CPD will be the next day, Tuesday the 29th. I will then have a follow-up appointment (telemedicine) a week later on August 5th.
Most all of the funds will be needed upfront. And I will be getting a more itemized list of the required costs with my insurance company as soon as possible. Expect updates!
I am so excited to finally have relief from this debilitating disorder, but it will be impossible to pay for without the generosity of my friends and family. I appreciate each and every one of you!
And I encourage each of you–no… I want to demand each of you to self-advocate for yourself in the doctor’s office. And don’t be afraid to google your symptoms, no matter how weird or miniscule. There might be a community of people out there just like you, with information that will inevitably change your life.
Thank you, all! Much love!
Melody Liles