Achalasia type III: Anyone else?
I have recently been diagnosed with Achalasia type 111 and epigastric hernia; although the small hiatal hernia has been ruled out as far as my diagnosis with achalasia type 111 is concerned. I will have my first consultation next Wednesday with the surgeon who will be performing the (POEM) procedure on me. My referral from a general surgeon marked it as urgent, but I am still having to wait to be seen. I have lost and am losing alot of weight over the last couple of months. My symptoms with this are a slight burning sensation in midsection and the rib cage area and now seems to be going farther up. I'm eating less and less each day. The symptoms come on more when eating. The warming sensation also affects my head. Lately they feel like when I was going through menopause, but they don't last but for maybe minute at a time. Come and go during the day. I'm jittery in the .morning hours it seems. I'm mostly worried about my weight loss. Has or is anyone been diagnosed with this achalasia type 111? Can you tell me about how far advanced you are. I'm hoping that after next Wednesdays appointment, I'll be able to get the surgery procedure done soon afterwards. Even with all of the covid patients taking up the hospital beds.
Interested in more discussions like this? Go to the Digestive Health Support Group.
@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?
From the symptoms you have mentioned I'm sure that you are looking to get some relief. This sounds very uncomfortable and the weight loss is difficult.
While I've never had your particular diagnosis, I have had a lot of upper digestive issues, including surgery for carcinoid tumors in the duodenal bulb. If you read the discussion that Amanda, @amandajro, mentioned, POEM Surgery for Achalasia: https://connect.mayoclinic.org/discussion/two-months-after-poem-surgery-for-achalasia/ you will find several members of Connect who speak quite highly about their surgery and the good results.
Was this hard to diagnose? What tests were done to reach the diagnosis of Achalasia type 111?
I first had the upper GI endoscopy, where as a small hiatal hernia was discovered, but was told eventually that it had nothing to do with the symptoms I was having. The endoscopy test was done on July 14th-21. I then got in to see a gastroenterologist in August 26th to get the esophageal manometry with impedance 24 hour PH test. Now just getting to see a surgeon that specializes in the achalasia type 111 this September 15th. I've read what people have said on here and now know what to expect. A bit scary, but I am so done with these symptoms. I especially don't like that for 3 days before procedure, I can only have clear liquids, and I believe for 3 days after. And there is going to be some pain for a few days after. Someone wrote that you have to take a pink liquid for the pain; but that it really helps. And also not looking forward to spending even one night in the hospital, especially in today's world.
Things I will need to do before surgery and post-OP recovery time and what to expect after; such as for pain and what I can eat.
I was just diagnosed last week with a esophageal manometry test even though I had negative EGD and barium swallow. I’ve seen 9 different specialties since February and no one could find anything.
I also have pancreatic insufficiency (malabsorption) all from Covid a year ago. I’m on pancreatic enzymes every time I eat which has helped with absorption but it’s a catch 22 because when I eat I’m in constant pain.
Have you tried any other treatments prior to scheduling surgery?
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!
@rparenteau I think your question might get better answers in the Digestive Health group. I included the link that takes you there.
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/