An open letter to insurance moderators and the medical world, regarding retrograde cricopharyngeus (CP) dysfunction (RCPD), no burpers:
Thank you for the opportunity to disclose and disseminate what I have learned about the no burpers of the world – the folks who experience RCPD and cannot burp. If one cannot burp, then all the gas you swallow or the gas created by food and drink stays within the GI tract, resulting in bloating and pain, every day, every night. Since the gas needs to go somewhere, it eventually results in excessive flatulence, obviously a significant social problem for some.
These folks go through extensive GI workups, with barium studies and scopes, reflux medication trials, etc, which all fail. Because the source of their problem is not addressed!
There is no other GI disorder that can account for these patient’s symptoms. It is simply the lack of knowledge of this disorder with in the medical world that prevents appropriate referral and treatment.
Dr Robert Bastian of Chicago published a paper in 2019 and coined this disorder RCPD. His treatment with botox injections was highly successful in alleviating his patients pain and discomfort. And unlike other botox treatments, seemed to last.
Now in many areas of the US and the world, select ENT docs have followed his lead and are injecting botox with amazing results.
I have been injecting botox for years into the CP for years in older adults with dysphagia due to achalasia (inability of the CP to relax and allow food and water to enter the esophagus) These older patients couldn’t swallow and were faced with a possible G tube or peg to get nutrition and hydration (water). It works great, but needs to be repeated very 4 to 6 months or so.
Then I was contacted by a 40 something no burper patient, and asked if I did botox injections for RCPD. For what? So I looked up RCPD and it’s treatment and replied that I would be happy to help with injecting the botox just as I did with older folks. And it changed her life. Here is her email several days post op:
“You have changed my life. I cannot thank you enough. Thank you for listening, being practical, treating me rapidly, making the hospital experience fun. I send you all of the thank yous. Burping like crazy. I went out for dinner last night and decided to screw it, I’m eating a huge plate of pasta and drinking half a bottle of wine, let’s see what happens. Zero bloating. Zero pain. I wasn’t trying to find excuses to leave. Slept like a baby for 10 hours straight. Stomach remained perfectly flat. I may just solve world peace and hunger at this rate.”
To date I have treated three patients. The other two have had similar results. The procedure is outpatient, very little discomfort post op, requires around 100 U of botox.
This problem is real. This problem is well described by respected specialists. This problem is treatable with high success. The treatment is life changing.
Please become aware of this problem. Please approve requests to help these patients.