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Achalasia type III: Anyone else?

Digestive Health | Last Active: Jun 19 9:14am | Replies (17)

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@rparenteau

Hello all, and welcome to my post. If you read my profile you will see that I have a long medical history that is only partially covered but, I always try to be a happy, upbeat person. Not too long ago, maybe 6-7 years ago or so, I had an issue where I was unable to swallow, even my own saliva and after talking to a large number of doctors, each with their own opinion on what the cause was, I underwent the removal of my lap band. Unfortunately, that was not the issue, and I wasn't going to pay for another surgery at that time. I eventually ended up seeing Dr. John Clark at Johns Hopkins University and after quite a bit of attempting to get the tube down my throat, they took me in and basically attached it to the end of an upper GI (so I was asleep at the time and had to basically get the tube down my throat as soon as I woke up). It was fairly quick when he came back with the diagnosis of Type III Achalasia and, while the numbers may be different at this time, I was told it was a one in a million chance that someone can get Type III (vs. approx. one in 100,000 with type I and II). I was told at the time there were 4 basic ways to treat the disorder; basically, either a balloon dilation, Botox injections into the surrounding area (temporary, lasts 6 months to a year), a Heller Myotomy, or the POEM procedure. Of those 4 options, he told me the dilation only worked on perhaps 10% of those who had it and they would need to be treated differently, the Botox is out of the question as I get that currently for the migraines I get nearly daily, leaving only the last two methods. He explained that of the two, the POEM is the better treatment option in his opinion due to the fact that there is little to no external cutting needed and you are out of the hospital in as little as one day, whereas the other option, it could be rather invasive. I decided that the POEM method would be the best way to go and he then informed me that most insurance companies will not cover that procedure, despite it being used throughout the world for nearly 2 decades at that time as, the US didn't choose to select it as a viable treatment. After going down the rabbit hole, he was right and my insurance did not choose to cover it despite me appealing it three times, a doctor-to-doctor call as well as getting the Maryland State Attorney General involved. I chose to wait it out to see if at some point in the future, the POEM procedure would be approved. Looking forward to today, I feel like the swallowing issues are coming back hardcore and I have been eating less and less, drinking fewer drinks, and all around I am a bit miserable from it. I of course started looking into Achalasia more and I see that there is now a possibility that COVID-19 can cause folks Achalasia to be more noticeable and while I have never had COVID, I am starting to wonder if that could actually be related. Anyway, I hope someone on here has some kind of experience or guidance in what the next logical step should be. Thank you all for your time and sorry for my extremely long message!

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Replies to "Hello all, and welcome to my post. If you read my profile you will see that..."

@rparenteau I think your question might get better answers in the Digestive Health group. I included the link that takes you there.
https://connect.mayoclinic.org/discussion/two-months-after-poem-surgery-for-achalasia/
Several members there are discussing achalasia.
I see that you are new to Mayo Clinic Connect-welcome! How did you find this site?

@rparenteau this is an add-on to my previous note. These 2 members may be able to help you in the Digestive Group. @gori175 and @hopeful33250

Thank you Becky. I will look there as well! I actually know of the Mayo Clinic and just happened to be researching a Hal Asia and it pointed me here. Fingers crossed here for a good answer! And thank you again!

Hi @rparenteau, I add my welcome. I moved your post and questions about type III achalasia to this existing discussion so you can connect with @cheryl46 and @d13:
- Achalasia type III: Anyone else? https://connect.mayoclinic.org/discussion/achalasia-type-111/