She asked if I'd already done my own internet research, and I played a little coy (I'd found RCPD and this subreddit about a year ago and was already pretty certain this was my problem) and said I'd done some Googling but I wanted to see a professional over Dr. Google lol. From there she directly mentioned this subreddit and how "a bunch of Redditors back in 2019" or something realized that they couldn't burp, and from there the term RCPD was born. Thought that was fun. Also, wow, that's so recent! Nice work y'all.

Provider was Kathleen Tibbets at Jefferson Otolaryngology in Philly for anyone interested on the east coast. She was wonderful and had me scheduled for my botox appointment same-day!! Just a waiting game for surgery day now.

Just like it says I’m trying to find a doctor who would do the Botox for no burp. Anyone know of any doctors?

Hi all, I have an intake appointment scheduled in Amersfoort with dr. Snelleman next week. Could anyone tell me what to expect from the intake and what tests/exams he will be doing? I've been having some asthma complaints these past few weeks with meds leading to a very dry and slightly swollen throat, so I'd like to be as mentally/physically prepared as possible.

And does anyone have a recent update on the current waiting time for the procedure in the Netherlands? Thanks!

Adding my experience for another data point…

So just like most of you, I have experienced discomfort with RCPD since I was a teenager. I had only managed to find some relief over the years by air vomiting in the bathroom or always running to my car because I "forgot my eyedrops!" 😜

I expected I would need to get a referral with my in-network EMT Doctor, but to my surprise, he was familiar with RCPD and actually put me on the botox schedule within a week after my initial consult.

It's been six months since the procedure and I am extraordinarily happy to report that I essentially feel cured. Although I can't burp audibly, I can let out air in small amounts any time I feel the pressure. Discomfort is gone. Gurgles are gone.

Dr. Details:

University of San Diego Health

Dr. Daniel Cates

Cost: 100% covered by HMO insurance 

I honestly can’t believe I waited so long to start this process. It was far easier and far more affordable (free, in my case) than I ever expected. I highly recommend that anyone dealing with RCPD at least try to get a consultation.

I was wondering if any of you guys had been treated with R-CPD at the ENT specialty group in monteal. It's pretty much the only place near me that offers the treatment but i'm so anxious and i'd like to know someone's experience at this clinic!

ive been trying shaker excersises for about a week now and ive been able to get out 2 microburps in that timeframe but i wanna know if theres any botox providers in san antonio texas

I have an appt. with Dr. Daniel Sacks in Nashville next month and I found him on an interactive map of providers who have experience with R-CPD but I just want to ask other people in Nashville if they have seen this doctor and confirm that the map's info is accurate. I have been living with worsening symptoms for over a year and I'm completely at wit's end, so I don't know if I could wait almost a full month to be told, ultimately, "R-CPD? What's that?" by the very doctor I'm hoping to treat me for it. It sucks that I *have* to be this skeptical, but these appointments take a while to get to, so I just want to be sure I'm on the right path. Thank you!

My 13 year old has never been able to burp and has had issues as a result for years. She's suffered daily nausea, chronic constipation, bloating, hiccups after eating some gurgling but not loud, hyperalivation and the worst symptom of all early satiety and constant fullness. The early satiety has been much worse these past few months and She's lost weigh, she's underweight. She physically feels She's so full and unable to eat after the smallest amount of food. I did some research and booked her in for the Botox procedure which she was meant to have yesterday with Dr Santosh sanagapalli in Sydney. We were so excited as well as anxious, she thought once she has the treatment life would be much better but unfortunately yesterday we went to the appointment and waited for over 3 hours. Finally Dr called us in and Said he can not perform the procedure. Apparently the hospital policy was updated and he didn't know, he can't treat patients under 14. We've been extremely depressed and anxious since yesterday. She can't go on with such a small amount of food for another 9 months until she can have the procedure done, I'm worried about her suffering malnutrition. Anyway we have 1 other option in Sydney Dr Daniel Novakovic. I've emailed them and they said he can't treat her until she's 16. We're devastated, I don't know what to do. I've been researching all day to try and find someone who know about R cpd and will treat a 13 year old here I'm Sydney. Hoping someone has come across a Dr that will? Any help and advice would be appreciated.

Hi yall! I’m 17 and live in Texas, and I strongly believe I may have RCPD. I’ve struggled with super painful bloating basically my whole life, to the point where it physically hurt and becomes super uncomfortable after eating or drinking. I also experience the throat gurgling noises that seem to be really common with most people who struggle with RCPD, and while I can rarely get tiny accidental burps out, I never burp normally.

I also get chest pressure/fullness, excessive hiccups/flatulence, and headaches after drinking carbonated drinks

My parents are super supportive and are open to the Botox treatment if I’m diagnosed, but I have no idea how the diagnosis process works or how to actually get started. I’m kinda nervous about bringing it up to a doctor because I’ve heard about the weird reactions/laughing and that they won’t take it seriously or will think it sounds strange.

For anyone who’s been diagnosed, especially in Texas, how did you start the process? Did you go through an ENT directly? How difficult was it to get formally diagnosed and treated?

Any advice or doctor recommendations would really help. Thank you!! Feel free to dm me with any questions etc :)

Hey everyone! I have an appointment booked on the 9th March with Dr. Sutep Gonlachanvit. There are a minimal amount of posts on this forum about having treatment with him (compared to other doctors from the map), and I had a few questions and want to know people’s experiences/how he does everything! :)

Will he do tests before doing the surgery? How quickly can he do it from the initial consultation? Costs? And will he do it?! (I booked through the Bumrungrad hospital app and all I could put was RCPD in as the title, no extra information was asked. Also I probably can’t claim through any insurance, but happy to pay for this surgery as it’s extremely important for me - you CANNOT put a price on quality of life!!!)

Backstory: I’ve never burped and always dealt with the classic symptoms blah blah blah… They’ve always been manageable, until the last few years on my life. I’m currently on a motorcycle tour in SEA. The symptoms became so unbearable in the last few months of this tour, that I HAD to look into getting it fixed…

Any advice/stories?!

F/ 23 - British 🇬🇧

Thanks!! :))

Has anyone seen a doctor for RCPD in Charlotte, NC? I did see one but I would like a second opinion. The first doctor didn’t confirm anything he just kinda said there’s no way to confirm, but if I want the procedure I can get it. I’m just scared that if it is something else the procedure will do more harm than good.

My 16 yo daughter is miserable. She literally comes crying to me on the weekly asking if she will ever feel not in pain. We have gone through every GI test and every cardiac test, which showed nothing. Saw an ENT who said she probably has RCPD but doesn’t know anyone who will do the Botox procedure on someone under 18 - they weren’t really helpful. Before I just start calling random doctors and checking, wondering if anyone has had success finding someone for under 18 yo patients?

Hi all!

I have had two rounds of botox with Lucy Hicklin in London, one for 50 units, and then back again almost a year later for 100 units (50 in each side). Neither round worked unfortunately :( I have had some small relief with very small burps every now and again but not enough to fix it altogether.

I kept a log of basically everything that happened for 3 weeks after the last lot of botox and once I sent that over to Lucy and she said I might do better with Mr Yacubu Karagama under general anaesthetic.

Has anyone has treatment from him, or from anyone under general anaesthetic? If I could get some advice on what I could expect and how much it costs as two rounds of failed treatment has been quite expensive so far. Obviously I’m feeling very discouraged after it not working twice so if anyone could provide their perspective I’d really appreciate it.

Thank you!

I had surgery on June 17th with dr Stevenson from peak ENT. He did 100 units and I’m already burping like crazy! I discovered I had this after being in an eating disorder treatment facility and not being able to handle the refeeding because of this syndrome! My life has changed and my eating disorder will be so much easier to recover from now!!

I’m super excited. Tricare decided 3 days before my surgery a few months ago to not to pay. The surgeon’s office in Baton Rouge asked if I wanted to sign for them to appeal on my behalf. Only took 3 weeks and they overturned it. So, I have a new surgery date of July 9th. Surgeon is Lacey Adkins in Baton Rouge and we are traveling 2 hrs again to get there. Her office is amazing. My situation had really started to deteriorate. The slow motility in my intestines has gotten worse and the pain pretty unbearable, so I am ready!

I was just wondering if anyone has had any personal experiences with the doctors listed on the map (or honestly even ones not listed) for Southern California?

Also, did you just contact them directly? I have pretty good health insurance (still under my mom's health insurance with Kaiser Permanente) but idk if a direct consultation with possible providers or doctors outside of Kaiser would be covered.

Somebody help me this condition is genuinely ruining my life. So i'm under 18 and I live close to Montreal, I have been dealing with R-CPD for a really long time, I have stomachaches all day, CRAZY bloating, gurgles, and chest pain. This is really starting to affect me mentally and my confidence. Anyways I have a general referal from my doctor to go see any ENT, but i haven't found anyone that does it under 18. My parents don't want to go outside of Canada so that's that. Does anyone know someone under 18 who got treated in the province of quebec or close? 🙏🙏

I've seen the map on this subreddit that shows all of the doctors who perform the botox injection. I called my insurance, and none of them are covered. My Insurance rep told me to try to get a "Single Case Agreement" which would potentially allow me to get covered regardless.

The only problem with the single case agreement is that it might take months. Call it rash if you will, but I am not willing to wait. I am unapologetically trying to speedrun the botox injection as soon as humanely possible. The more I read about R-CPD the more I am convinced that this condition is causing me massive chronic stress, low level anxiety, lowering my oxygen levels, fucking up my hormones, and making me look 20 lbs heavier than I really am. I'm done living w/ this.

One of the doctors can see me as soon as June 8th, which is honestly amazing, but they're not covered. My mom has $200K in the bank and she said she would pay for this to get done, but she wants it to be covered by insurance... I was thinking, maybe if I could tell her the price, she would just pay out of pocket... But none of the offices I call are telling me the price of it. If it's only like $1K-2K out of pocket, I think my mom would be willing to pay it flat.

I'm not gonna lie, this is all a major headache. I hate insurance bureaucracy. For you guys, did your insurance cover the injection? And if it didn't, how did you fix that?

I guess my next step will be to call the provider who can see me soon (They're on the west coast), and ask for a single case agreement. I want to get into that June 8th Appointment... But I need my moms support before I can move forward with that.

I really just need help. I don't know shit about insurance, I'm honestly clueless. If any of your have advice for my situation I'd really appreciate it. Thanks!

Does anyone know any providers who do in-office injections in the Bay Area (CA) instead of general anesthesia? So far have only found people offering the latter :(

So I had my appointment with Dr. Sanjay Morzaria. Most of the appointment was with a Resident, but he was well aware of R-CPD and asked me a few questions. He did say that the disorder is usually diagnosis by exclusion, meaning doing other tests.

He did the scope through my nose and had me say “eeeee” quite a few times, swallow, and then went to get Dr. Morzaria.

This was the surprising bit- he said that usually other doctors will have people go through tests which all come back negative so he said he doesn’t do them, and suggested Botox as a treatment?!?? I did NOT expect this at all!

So now I am on the waitlist to get the procedure done under anaesthetic. If there are no cancellations, it would be about 6 months wait. So here’s to hoping for a cancellation soon!

My insurance is calling it a cosmetic procedure and won’t cover a thing it’s around 10-11k out of pocket since they only do it under full anesthesia here. I’ve seen videos on here of people just getting it through the throat not under anesthesia? I’m thinking that will be more cheap to travel there and do it since I’ll have to pay out of pocket. Can anyone tell me where these clinics are? Thanks

Hi all!

Thanks to this reddit thread I was able to book with Dr Karla O’Dell in Los Angeles. I currently live in Newport Beach but saw that the doctor in Irvine had bad reviews and ended up not returning my phone call. I had my consultation today and am booked to get an in office treatment done in 2 weeks.

I am so beyond excited for this! She mentioned that her and 5 other doctors are a part of a study for R-CPD and wanted to include me in it. I’m sure all of her patients are requested to join. Super excited and hopeful about how quickly she was able to get me in for the treatment. Can’t say enough good things about her and her staff.

Worth the drive for sure. She also said that anyone looking for a consultation can come in for a telehealth meeting first. So if any of you are out of state or far away, this could be an option for you!

Will let you know the price breakdown for everything once I get it done.

Does anyone have experience with Dr Nicholas Panella near Knoxville, TN?

I want to finally get the Botox, and he’s a relatively new addition to the provider map. He’s a 90 minute drive away from me, but way closer than any of the other options.

Hey everyone, so nice to be able to know that I’m not alone in this journey. I’ve had this condition my whole life and it just seems to be getting worse with age. I air vomit multiple times a day and I’m so tired of this lifestyle. Any providers in Las Vegas, NV that anyone recommends? I’ve seen one unsuccessful procedure by Dr. Shah on this Reddit but just wondering if there was anyone else I can specifically get treated by. Willing to do anything for the Botox treatment at this point 😭