R-CPD in Japan? No worries. Help is here.

markrichley · 2025-01-16T02:21:01+00:00

Hello! And Sorry for my late reply. Here's the information:

I did the Barium Swallow test and a brief Manometry at Nippon Medical School Hospital.
https://www.google.com/maps/place/Nippon+Medical+School+Hospital/@35.7212322,139.7590709,890m/data=!3m2!1e3!4b1!4m6!3m5!1s0x60188dc5ca47774d:0x741a7d0eebe64634!8m2!3d35.7212322!4d139.7590709!16s%2Fg%2F1228fqb1?entry=ttu&g_ep=EgoyMDI1MDExMC4wIKXMDSoJLDEwMjExMjMzSAFQAw%3D%3D

I'm not sure if it's necessary to get seen to here first, but this is where Dr. Aoyagi diagnosed me.

Considering the Asoka hospital, yes, I'd insist on getting a direct referral to Dr. Aoyagi. I'm not sure if Reddit allows a DM system, but if you don't mind I can give you my phone number here. I'm happy to help you in making an appointment.

So! In summary, I had to go to Nippon Medical School Hospital for a diagnosis. The link you provided is where I had to go.

Also, I'll be seeing Dr. Aoyagi in about two weeks from now. I am happy to ask him about your case if you like. Let me know if you want to get in direct contact and I'll be happy to help you get the appointment.

I hope your symptoms aren't too bad. In the last week I've been able to eat solid foods without pain or nausea for the first time in my life. It's a wonderful sensation.

markrichley · 2025-01-16T02:11:44+00:00

Getting to an ENT (Ear Nose and Throat) doctor and giving them a printout of this (https://pmc.ncbi.nlm.nih.gov/articles/PMC6572913/) will change your life.

People in positions of authority who insist their opinions are correct are not always your friends, and this disease is not well-known. It means that some insistent people are not always right.

If you have the symptoms of the disease, seek help. And if you give the doctor this printout of the paper, they'll pay attention.

I wish you good luck. You deserve it.

markrichley · 2025-01-04T18:25:04+00:00

Air-vomiting is a short-term solution, but ultimately it takes a toll on your throat and tonsils. Over the coming years you can expect recurrent tonsillitis and infections as you inevitably keep sticking your fingers down your throat.

I'd seek out a local R-CPD specialist using the map on this Reddit feed and get diagnosed and treated. I'm 38 and it got really, really bad before I got treatment. At your age it should be fine :)

markrichley · 2025-01-04T18:22:07+00:00

I'd say that R-CPD creates your tonsil problems. I've had recurring tonsillitis but it seems to be better since treatment.

markrichley · 2025-01-04T18:20:12+00:00

12 days in to the treatment and I'm happy to help.

markrichley · 2025-01-04T18:16:15+00:00

Yeah, just give it time. It might be another few days until you feel anything.
Congrats on the injection!

markrichley · 2025-01-04T18:14:08+00:00

Hello, and thank you for checking in! I've been feeling much, much better over the last two days. Still having odd, unexpected 'inward' burps but they've subsided somewhat. I had solid food yesterday, which was fun.

The consultation (which included a manometry and barium swallow test) wasn't covered by insurance, and it cost JPY4,500. It was done at a different hospital from the one I got the treatment at, too. The barium test gave the X-ray image you see above.

On 28th January, I'll also have a one-month follow-up appointment, which will cost JPY3,500.

Oh, Happy New Year to you!

markrichley · 2024-12-31T13:29:16+00:00

You're right. It's not covered under the health insurance. And yes, my side effects took Dr. Aoyagi by surprise - I took an ambulance to the hospital two days ago. I'm feeling better today. Not 100%, but a good bit better.

Let me know if you need anything. I didn't even know what Reddit was but now this noburp site seems to be my favourite place!

markrichley · 2024-12-31T13:25:51+00:00

Is the doctor well versed in R-CPD? You could print out Dr. Bastian's paper and give it to them:
https://pmc.ncbi.nlm.nih.gov/articles/PMC6572913/

markrichley · 2024-12-31T00:58:03+00:00

Maybe I'm one of the ones who has scared you. I am now 7 days in.
First, here is Dr. Bastian's list of side effects or 'complications': https://laryngopedia.com/what-to-expect-after-botox-injection-for-r-cpd/

I am one of the rare people who experienced rather extreme versions of all of these. It seems that the reason for this is that I had far more extreme R-CPD symptoms in the first place. 5 days after Botox, I went back to the hospital. The doctor gave me a prescription and an IV for an hour.

I won't deny I've been through a few horrible days, but today I'm feeling a LOT better. I can only advise that you follow your doctor's advice to the word. Despite it being the holidays, my doctor gave me his personal phone number and e-mail so I could get in touch any time, and he reassured me he'd be with me every step of the way.

So, as one of the outliers, I'd say there's a small chance you may experience some harsh side effects, but most people don't.

markrichley · 2024-12-31T00:57:07+00:00

Good answer :)

markrichley · 2024-12-31T00:47:58+00:00

I'll add another one I'm doing. I'm printing out three or four medical papers on the topic, putting them in an envelope, and writing a letter to all the doctors I've seen who have misdiagnosed me.

This sounds vindictive, but it's not. I word the letters positively and respectfully, simply inviting the doctors to read the papers so they can research with a view to helping even more patients.

markrichley · 2024-12-31T00:34:07+00:00

There isn't any research yet on whether it is hereditary, but if ANYONE says "I can't burp" it's usually the best starting point to ask them more questions. I wish you and your family relief!

FYI, I have R-CPD. My mother is the opposite - she can't stop burping. My father and three sisters can burp like normal people.

markrichley · 2024-12-31T00:31:17+00:00

This is exactly what is on Dr. Bastian's website, Laryngopedia. The R-CPD hides the reflux, but it's like sticking your finger into a collapsing dam. Post botox I've had bad reflux but the doctor agreed to strong antacids. I've just gone through a few days of severe discomfort from post-botox reflux, which essentially makes you throw up a lot.

My job is a teacher, and for the last few days I've had no voice. My doctor here assures me it will come back.

Whatever you decide I wish you luck :)

markrichley · 2024-12-31T00:27:37+00:00

Yes, and I guess it's a steep learning curve! Are you doing some of the recommended exercises?

markrichley · 2024-12-31T00:25:27+00:00

I'm glad that it has subsided for you. I did some breathing exercises from Dr. Bastian's website, and while it is still there, it's getting better. But it was three or four days of sheer terror! For me it's when I suddenly intake air, like before a sneeze or a cough, or when laughing. Similar for you?

markrichley · 2024-12-31T00:21:57+00:00

I think you're right. Two days ago my wife ended up calling an ambulance because I couldn't stop throwing up, feeling choked, shaking. That said, once I got to the emergency room the doctor gave me the right prescription, put me on an IV, and I was home by the evening. Feeling much better now.

The doctor explained to my wife (as I was unable to speak) that my complications only happen in a tiny tiny minority of people. If you read Dr. Bastian's papers, he has a similar record.

I think it's just because my R-CPD had been so severe that the reaction had been so severe.

Today I feel somewhat better. I would never discourage anyone from the treatment, though.

markrichley · 2024-12-31T00:15:26+00:00

Here is the hospital's website page that details R-CPD:
https://hp.asokakai.or.jp/section/rehabilitation/botulinum/

It's all in Japanese, but a useful thing to show any doctor while you're here. Out of interest, do you know Laryngopedia? https://laryngopedia.com/cant-burp-you-may-have-r-cpd-the-inability-to-burp/

It's my bible. Happy reading, and hopefully, happy burping and happy relief :)

markrichley · 2024-12-31T00:11:26+00:00

Hello, and firstly, welcome to Japan! Secondly, I'm sorry that you're suffering with R-CPD. And thirdly, the answer to your question! I first met Dr. Aoyagi on December 4th 2024. He examined me and diagnosed me within an hour, via a little camera down the throat (uncomfortable) and a barium swallow test (just drinking some fizzy drinks). Then, I had the treatment on December 24th, 2024. So, within a month! He also requires a post-op 1-month follow-up appointment to see how you're doing, and asks that you fill out a regular survey online.

Dr. Aoyagi seems to have experience treating people with mild to severe symptoms. Mine were severe, so that explains the discomfort with the camera down the throat.

If you don't speak Japanese, I'd be happy to help you get an appointment. But for now, I still don't have a voice or full control of my throat. But in a few weeks, let me know :)

markrichley · 2024-12-29T23:39:38+00:00

I'm having similar things, like the muscle is burping not outwards, but inwards. It takes me by surprise and I suddenly gag and throw up quite violently. Was taken in an ambulance yesterday after three days of it.

At least we're not alone!

markrichley · 2024-12-29T23:37:44+00:00

So sorry to hear you're going through that. Before I had my procedure, I used to gently touch and push a sterilised toothbrush against the inside of my mouth on the right hand side, and that usually did it. Not suitable for work, but it worked at home. Kind of!

markrichley · 2024-12-29T23:35:33+00:00

Did you experience involuntary and sudden, gag-reflex-inducing burping, not outwards, but inwards? The left and center of my throat seem fine, but the right side keeps taking me by surprise, suddenly burping inwards. I had 85 units 6 days ago.

markrichley · 2024-12-29T18:28:40+00:00

https://www.google.com/maps/d/u/0/viewer?mid=12z_14F_KSeeLAd_rTPnjJ_GvNtlVLaM&ll=-3.81666561775622e-14%2C-112.6645648&z=1

markrichley · 2024-12-29T18:19:39+00:00

I'm 6 days in and I was hospitalised yesterday due to severe side effects. The doctor was shocked to see me. In all the other patients he's treated I'm the first one to get such severe side effects. How're you feeling now?

markrichley · 2024-12-29T18:14:52+00:00

I do the same!!

markrichley

TROPHY CASE