Achalasia type III: Anyone else?

@d13 I thought you might find the following discussions about achalasia helpful:

– Achalasia: https://connect.mayoclinic.org/discussion/achalasia/
– Esophagus issues: https://connect.mayoclinic.org/discussion/esophagus-issues/
– POEM Surgery for Achalasia: https://connect.mayoclinic.org/discussion/two-months-after-poem-surgery-for-achalasia/
– Achalasia Chronic pain: https://connect.mayoclinic.org/discussion/achalesia-chronic-pain/

In addition, I'd like to bring in members such as @fourof5zs @ryman @hopeful33250 and @dandl48 to see if they may be able to support you as you get ready for your upcoming appointment.

What information are you most seeking at this time that members may be able to share with you?

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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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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!

Jump to this post

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!

Jump to this post

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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