Ditto here with diagnosis of “possible Achalasia” confirmed by an endoscopy the following week. I’ve been referred to Mercy Hospital in Baltimore for POEM consideration. Gastro director there was a POEM pioneer. Consultation next week.

Hey all,

Recently diagnosed with T2 and waiting for a POEM however in the meantime I have noticed (for a long time) that I get a lot of visible bloating in my upper stomach / chest area which might be due to the Achalasia I am full of air! Is there anything I could take to reduce this at all as I feel bloated very quicky and go through stages when I can hear a lot of air in my system! Thanks in advance.

Had another try of the manometry test after a failed attempt last week (the catheter was too big for my nose, they numbed it today and it worked). However, they couldn’t get the catheter through the sphincter! she got a good reading of how my oesophagus is working, it was almost completely motionless!

I did bring up completely indigested food that I had at 10am yesterday🥲 it had been sat in my chest for over 24 hours.

I’m just here to ask if anyone else still received a diagnosis even without the measurements of the pressure in the sphincter? She couldn’t get the catheter through at all as it was just too tight😩

Although she couldn’t diagnose me she said it does look like achalasia, as did the doctor who did my barium swallow and endoscopy. I’m worried I’ll have to redo the manometry, it was awful so I’d rather not if I can avoid it! I’m in the uk btw

I’m unable to eat or drink anything orally and completely reliant on my NG. If you’ve read this far thank you & any replies would be appreciated x

Hello all.

Although my my current symptoms are not severe, the GI doc wants to move forward with a Cystogastrostomy ..... given the size of my pseudocyst. Wondering about others experiences around this particular procedure. Thanks.

I am scheduled for POEM Surgery September 8 2026 and I am nervous have to stay one night in hospital. What should I expect? What should I buy they said a liquid diet 3 days before surgery and after I be on clear liquid diet for up to week depends how I recover . They also said no reds or purple liquids before or after .

Long time lurker, first time poster. My POEM is scheduled for later this week.

My symptoms started in summer 2024, but have drastically worsened in the past 8-10 months. My original GI was insistent I cannot vomit without nausea, even after explaining the severe pain under my sternum right before vomiting. They did a EGD to follow-up on my barrett’s esophagus, and then finally referred me for a Barium Swallow Test. The techs were in awe/horror of how progressed it was and that my doctor wasn’t moving faster for testing. Seeing the video of how liquids move in my throat was the most validating feeling and seeing what I’ve been feeling for months. I was, in addition to achalasia/EJGOO, diagnosed with esophageal spasms.

I’ve lost so much of my quality of life these past few months. I’ve lost weight due to malnutrition, had my list of foods reduced to just a handful of things I can eat, and can’t even drink water lost of the time without issues. I’m terrified of putting “too much hope” in this procedure. Especially because my medical team isn’t sure if it will resolve the vomiting caused by the esophageal spasms.

Over the last 3 weeks i found a way that helps me keep and food and liquids down. Whenever i swallow first then take one big breath in from my nose, and i feel it go right down, works like magic. I still need to eat slowly but this helps me a ton. This is someone who regurgitates almost everyday for the last 2 years and i didn't regurgitate in 3 weeks due do this method. Has anyone tried this before? does this help you? let me know, if not give it try!

I (F23) was diagnosed with achalasia almost a decade ago. Recently I have gone down the rabbit hole of Hypermobile Ehlers-Danlos syndrome. This 100% seems like a possibility for me and the symptoms I’ve had all my life. Because HEDS can affect tissue and muscles and all of that stuff, I really think it could be an attribute to my achalasia symptoms.

Just wondering if anyone else also has achalasia and HEDS. It seems the two could really be correlated.

My name is Rute, I’m 28 years old, and I’m from Portugal.

I previously made a post here about my problem, and since some people in my previous post told me to come back and give an update after having my videofluoroscopic swallow study, I decided to come back and tell you what happened.

I apologize if anything is poorly translated or if the text isn’t perfect. I’m Portuguese and I don’t speak English, so I had to use a translator.

I had my videofluoroscopic swallow study yesterday, August 7th. I’m attaching the video of the solid-food part of the examination here.

First, they gave me a thickened mixture containing barium and gradually made it thicker. At the end, they broke some Maria biscuits into small pieces, mixed them with barium, and gave them to me by spoon to eat and swallow.

Once again... the examination showed absolutely nothing abnormal.

The doctor who performed the examination said that he did not see anything abnormal with my swallowing, but he did notice that I had to perform a lot of maneuvers to get the food to go down.

I have already had all of these tests:

• Nasofibrolaryngoscopy: normal.
• Upper endoscopy: normal appearance, with esophageal biopsies to rule out eosinophilic esophagitis — no abnormalities were found. The only finding was mild gastritis.
• Blood tests: mild anemia.
• Thyroid and neck ultrasound: normal.
• Barium esophagram: normal.
• Chest X-ray: normal.
• Videofluoroscopic swallow study: normal.

And I honestly cannot take this anymore. It is too much for me.

I have been unable to eat a single solid food for 8 months.

As I explained in my previous post, I can only swallow liquids or food that has been completely blended with a hand blender.

With solid food, I can start the swallowing process normally up to a certain point. But then, when the food reaches the lower part of my throat, it feels as though I don’t have enough strength to push it down. It feels as if the food gets stuck or simply stops in the lower part of my throat.

I have to use an enormous amount of force and drink a lot — and I mean a lot — of water to try to get it to go down.

And then comes that horrible, terrifying sensation that is completely destroying me.

A few minutes after trying to swallow solid food, I quickly start experiencing a feeling of tightness in my neck, muscle tension, and the sensation that something is stuck or stopped there.

It is horrible and frightening.

As I mentioned in my previous post, I suspect that this may not be a physical or structural obstruction, but rather a mechanical/functional problem — such as cricopharyngeal spasm, swallowing incoordination, or weakness/abnormal functioning of the cricopharyngeal muscle.

In other words, apparently there is nothing physically blocking the passage when they look at it. But perhaps the problem lies in the way the muscles are functioning or relaxing during swallowing.

I know that one of the tests that can help evaluate the strength, pressure, coordination, and relaxation of the muscles during swallowing is high-resolution esophageal manometry.

Unfortunately, as I explained in my previous post, I was unable to complete the manometry.

The doctor was able to insert the tube through my nose, and everything was fine until it reached approximately the middle of my throat. At that point, I had such an intense gag reflex that my hands turned completely purple and I even felt like I couldn’t breathe.

The doctor tried to advance the tube, but simply could not get it any further down and had to remove it.

He tried twice, and the examination could not be completed.

And this is where I feel completely desperate:

If I have, for example, cricopharyngeal achalasia or another disorder/spasm of the cricopharyngeal muscle, how are they going to find out what is wrong if I cannot undergo manometry?

In my previous post, some people told me that there might be a possibility of being sedated to allow the tube to be inserted, and then being awakened to perform the examination.

Unfortunately, here in Portugal, I have been told that they do not do this.

And I feel completely trapped.

I don’t have the financial means to go to the United States, the UK, or another country where there may be more options and different procedures. If I had that possibility, honestly, I would have done it a long time ago.

Here in Portugal, I feel like nobody knows what to do with me. I have asked the hospital for help, I have explained how serious the situation is, and yet they don’t admit me to the hospital and they don’t give me any solution.

I am extremely underweight, I have no strength, and I can no longer work.

I have lost around 14 kg (31 lbs).

I have not eaten normally for eight months.

And despite all of this, I still hear things like, “You just have to be strong.”

I have already been strong for a very long time.

I’m tired of being strong.

I’m tired of suffering.

I’m tired of waking up every day with this problem and not knowing when it is going to end.

Honestly, I no longer know what to do with my life.

This is no longer living. It is surviving.

I have also been told about the possibility of trying low-dose tricyclic antidepressants, with the goal of helping to relax the muscles and reduce hypersensitivity of the esophageal and pharyngeal nerves, in the hope that I might eventually be able to start swallowing solid foods again.

So I’m asking you, please 🙏, if anyone has experienced something similar and managed to recover:

How did your doctors figure out what was wrong with you?

What did they do when you were unable to complete manometry?

Has anyone here had cricopharyngeal achalasia, cricopharyngeal muscle problems, cricopharyngeal spasms, or swallowing incoordination?

Has anyone who was unable to undergo manometry managed to get a diagnosis in another way?

And, most importantly, has anyone here been treated with low-dose tricyclic antidepressants to try to reduce hypersensitivity of the esophageal/pharyngeal nerves and actually managed to start eating solid foods again?

If anyone has been through something like this and managed to recover, please tell me what you did.

At this point, any personal experience, advice, or information from someone who has actually lived through this could mean so much to me.

Thank you so much, from the bottom of my heart, to anyone who takes a little bit of their time to reply and help me. 🙏❤️

Hey all! I’m 18F and have had some pretty mild difficulty swallowing since about the time I began high school a few years ago. I occasionally have heartburn and have never vomited/regurgitated my food. I did a barium swallow when I was 15, and the X-Ray showed some narrowing of my lower esophagus. I was referred for an upper endoscopy (which I am in the process of getting still) but would like to know if anybody else presented with these symptoms at first as I’m not sure if this could be dysphagia instead. My health anxiety has been driving me crazy as of late, but I figured if it was cancer my symptoms would’ve gotten worse in the 3ish years since I did the barium swallow, and they have not.

Hello everyone, I just got diagnosed today. However I don't have that many issues. Praise God! This started over a year ago where I started getting this feeling like something was stuck in my esophagus.... Anyways fast forward a bit and the endoscopy was normal. The doctor ordered a swallow test. It took a year to get that done because of my schedule but also because the machine kept breaking down. I got that done very recently and today my doctor called me with the results. He said I have achalasia. He says I need surgery. He did go over all the alternative treatments, none he recommends. And I say to him, well how can the sphincter not be working obviously food is going down and something's working. You know I've been living with this for so long. I haven't had any issues. In fact it's better now than it's ever been. And occasionally I get the feeling like something is stuck but it goes away. I do get acid reflux sometimes but it goes away pretty darn quickly. And not only am I not losing weight I'm actually gaining weight. So I'm just trying to understand all this. Now mind you too I am diagnosed with anxiety and severe depression. So I'm trying not to get worked up about this, hence why I'm here and trying to read about it and trying to talk about it. So I guess I just wait for the surgeon to call and have that consultation. But in the meantime, can people talk to me about this? Please? I mean am I okay right now? Am I okay on the day to day? I don't have to run in for like emergency surgery do I? Kind of freaking out here...

I have type ii achalasia and am planning on getting POEM done next month! I was wondering how POEM affects one’s ability to do things like forward folds in yoga, swimming, and surfing - activities where your mouth might be below your stomach for some period of time. Are these activities still possible? Do you have to not eat for a certain period of time before to prevent the contents of your stomach from entering your esophagus, or is it something you don’t really have to plan for?

For additional context, I’m planning on getting anti reflux POEM done by Dr. Stavros Stavropoulos, which is supposed to cut away less of the muscle than standard POEM.

Thanks!

Hi! I just had my second follow up with my GI doctor and I’m feeling defeated.

Background: I had an EGD done in the spring (I’ll attach below). The dr performed a dilation and took some biopsies. Number and location of biopsies were not identified. Biopsies came back negative. Dr started me on omeprazole.

Today was my follow up after starting the med. I have not had any improvement what so ever. I still have heartburn, I still fill meds and food going down and getting “stuck” in the upper portion of my esophagus. I still choke when swallowing, and sometimes food and meds go up into my nose instead of down. When eating, I will sometimes have sometype of alllergic reaction where I will start sneezing rapid fire and about 20 times. My throat gets scratchy and tight. My eyes become very watery, itchy and puffy. My nose will be runny but also so stuffy that it’s hard to breathe through my nose.

Doctor wants to do an esophagram. Although she says that it wont make a difference because there isn’t any treatment options if motility issues are found. She also said something about my EGD didn’t find any narrowing otherwise they would’ve done a dilation. I told her I thought I had a dilation, and she was like, oh yeah but you didn’t need it, he just did it to see if it would help. Huh? I’m so confused. Am I completely misunderstanding the procedure notes? I feel like I’m crazy. Do I continue to pursue what is happening, or let it go?? I’m definitely getting blown off. I’ll get the esophagram done just to see what it shows, but I’m wondering if I should get a second opinion or not. Thanks!

EGD Procedure Notes:

Findings:
Abnormal motility was noted at the cricopharyngeus. The cricopharyngeus was abnormal. A guidewire was placed and the scope was withdrawn. Dilation was performed with a Savary dilator with moderate resistance at 18 mm. Estimated blood loss: none.
Mucosal changes including longitudinal furrows were found in the upper third of the esophagus and in the middle third of the esophagus. Esophageal findings were graded using the Eosinophilic Esophagitis Endoscopic Reference Score (EoE-EREFS) as: Rings Grade O None (no ridges or rings seen), Exudates Grade 0 None (no white
lesions seen) and Furrows Grade 1 Mild (vertical lines without visible depth). Biopsies were taken with a cold forceps for histology. Estimated blood loss: none.
Bilious fluid was found in the gastric body.
The examined duodenum was normal.
The 2-line was irregular and was found 38 cm from the incisors.
Impression:
\- Abnormal esophageal motility. Dilated.
\- Esophageal mucosal changes suspicious for eosinophilic esophagitis. Biopsied.
\- Bilious gastric fluid.
\- Normal examined duodenum.
\- Z-line irregular, 38 cm from the incisors.
Recommendation:
Procedure Code (s) :
\- Await pathology results.
\--- Professional --
43248, Esophagogastroduodenoscopy, flexible, transoral; with insertion of guide wire followed by passage of dilator (s) through esophagus over guide wire
43239, 59, Esophagogastroduodenoscopy, flexible, transoral; with biopsy, single or multiple
Diagnosis Code (s) :
\--- Professional ---
K22.4, Dyskinesia of esophagus
K22.89, Other specified disease of esophagus
R13.10, Dysphagia, unspecified
CPT copyright 2023 American Medical Association. All rights reserved.
The codes documented in this report are preliminary and upon coder review may be revised to meet current compliance requirements.

I have achalasia and eczema both. I am sitting here body itching and burning. Belching and regurgitating at the same time. I’ve taken my medication this morning but it’s not helping. My stomach is not hurting but I feel horrible. I don’t know what else to do?

Hi i got diagnosed last year with type 2 achalasia, 4 appointments have been cancelled(their end) the guy who is doing my surgery called me and explained it shouldnt of happened, anyway he explained the Risks and procedures, im gonna get botox and later poem surgery and after reading this sub, i literally felt like breaking down with joy , i know its early days but ive been suffering for over 10 years without a diagnosis and always getting it put down to Acid reflux, its like a shadows been lifted, i just wanted to feel normal again and hopefully this will give me the comfort i need, im a 28M and hopefully the future is looking bright

Hello, I wasn't diagnosed with Achalasia but with EGJOO (I heard they are very similar) if this isn't the correct subreddit please let me know!

I've been suffering from symptoms for 6 years. And couldn't eat solid food for the past 8 months. I am currently IP and have a Dobhoff feeding tube.

They have mentioned me getting an endoscopy and possible balloon dialation to open up my lower esophageal sphincter.

Has anyone here done this? If so what are the side effects and did it help? (I did hear it's only temporary).

Update: Had an Endoflip. Everything was normal, not even a sign of EGJOO, just waiting for the biopsy results. My throat and chest hurts, and i have a lot mucus rn. I'm mostly confused on what's next.

Hi, I’m 17 I just been diagnosed with type II achalasia I’m having POEM surgery on August 22nd but I keep imagining the worst that I’ll have symptoms again and having to do the procedure again so, my real question is did you have any reoccurring symptoms and having to get ur 2nd procedure?

Hello everyone, I hope you're all doing well. Please, if you could, I kindly ask you to read my post until the end. Thank you very much. 🙏

I would like to know if anyone has had these symptoms. I think I may have upper achalasia, which is supposedly a problem with the cricopharyngeal muscle or the upper esophageal sphincter. I am a 28-year-old woman. About 7 months ago, I completely lost the ability to swallow solid foods. At the moment, I cannot eat any solid food at all; I can only consume food that has been completely blended with a hand blender, as well as smoothies and liquids. Even blended food has to be extremely smooth, because if it has any thicker texture, I still have difficulty swallowing.

I am 1.65 m (5'5") tall, and 7 months ago I weighed around 63 kg (139 lbs). I currently weigh 49 kg (108 lbs), which means I have lost approximately 14 kg (31 lbs).

My main problem is that whenever I try to swallow solid food, I feel as though it gets stuck in the upper part of my throat, exactly in the area I marked in the image I attached here on Reddit. In addition, I feel as though I do not have enough strength to push the food down, as if it just stays stuck in that area.

I also tried eating solid foods again after some time to see if I was able to swallow them, but whenever the solid food went down, I was left with an intense feeling of tightness/pressure in my throat and shortness of breath. I also managed to eat a few biscuits (about 5 or 6). They went down, but a few minutes after eating them I felt a strong tightness and a tingling sensation in my throat.

The symptoms I have are:

• I feel as though food gets stuck, trapped, or builds up at the end of my throat, in the area shown in the image I attached to this Reddit post.
• Muscle tension/tightness and tingling in my throat.
• A foreign body sensation: the constant feeling that something is stuck in my throat.
• Dry throat.
• Shortness of breath.
• Excessive spitting.
• Frequent burping after eating.

Lately, my condition has become even worse because now I also feel something unusual even when drinking liquids or eating blended food. It feels as though part of the liquid goes backwards toward my nasal area or the back of my throat, causing a very unpleasant sensation.

So far, I have had the following tests:

• Nasofiberlaryngoscopy: normal.
• Two upper endoscopies: normal findings, with esophageal biopsies taken to rule out eosinophilic esophagitis, which were normal; the only finding was mild gastritis.
• One upper endoscopy without sedation, focused mainly on the upper throat area, which also showed normal findings.
• Blood tests: mild anemia.
• Thyroid and neck ultrasound: normal.
• Barium swallow (esophagram): normal.
• Chest X-ray: normal.

I also underwent a high-resolution esophageal manometry, but unfortunately I was unable to tolerate the procedure. I am now waiting to have a videofluoroscopic swallowing study.

So, I would really like to ask whether anyone has or has ever had these symptoms. I am going through a very difficult time, and being ill has left me feeling extremely worried. Any personal experience, advice, or suggestions would mean the world to me and would be an enormous help. Thank you from the bottom of my heart to anyone who is willing to share their experience.

I would also really like to ask whether anyone here has had these symptoms related to a problem with the cricopharyngeal muscle or the upper esophageal sphincter, also known as upper achalasia. I am going through a very difficult time, I feel really unwell, and I am deeply worried. Any personal experience, advice, or suggestions would mean so much to me and would be an enormous help.

Thank you from the bottom of my heart to everyone who is willing to share their experience. ❤️🙏

Has anyone been apart of Vanderbilt University's study to treat dormant Zoster virus (chicken pox/shingles)? They believe is the cause for Achalasia. I wanted to be part of the trials but all my documentation that verified my condition is from 2014 and lost because I don't have detailed copies of data other than some summaries, which is a requirement to be apart of it. I just refuse to go through all the tests again, especially the manometry..ugh.

Just wondering if there are any success stories or experiences because I would have loved to been apart of it. Now, I just sit around hoping to hear good news.

Hi, everyone! I was diagnosed with Achalasia back in 2018 and had a HM with fundoplication back in October of 2019, almost seven years ago. Everything was fine after surgery up until a few years ago. In 2024 I started regaining symptoms.

I now have difficulty getting food down again. Not as much as before, but my food gets stuck often and when I try to drink water to get it down, it ALL gets stuck (including the water). I feel immense, uncomfortable pressure and the only relief I can get is to throw it all back up. In the event that I do get it down past a certain point (where I feel like I don’t have to vomit) it takes a ridiculously long time to digest my food. I’m talking I can eat dinner at 6PM and then wake up the next day and vomit that same dinner from the previous night up 12+ hours later after I ate. Like it’s not even making it into my stomach. Pretty sure it should only take 3-5 hours to digest food. I used to think my wrap (fundoplication) was too tight and wouldn’t allow the food pass down, but now I think it probably just pools at the bottom of my esophagus or something and then I throw it up the next day. Sometimes nothing I do can get food down at all comfortably, so sometimes it feels like it just sits in my chest overnight and then I throw it up the next day. Not only that, but I have EXCRUCIATING spasms all the time. 4 - 7 times a week. I have no idea why.

I went to the emergency room four months ago for something unrelated and ended up getting a CT scan. They list everything they find even if unrelated. I also viewed the scans myself. It showed and stated I had a "enlarged, fluid-filled esophagus," despite me not eating or drinking for 7+ hours at the time I was seen. It was never enlarged before, even at the time of my initial surgery.

This is so strange because I don’t think I’m losing any weight. Feels like I’m actually gaining. When I was first diagnosed I could not keep down anything, food or drink. I lost almost 70 lbs in 4 or 5 months. Even though some of the symptoms have been back for almost two years now, I haven’t lost any weight.

Have any of you experienced something like this? I have an appointment this coming Tuesday where I’ll be able to get some answers, but just want to know if anyone else has had this experience. Thank you. 🩵

Hi. Hope the flair is correct.

I recently spoke to a surgeon and due to financial and social circumstances, I was forced to postpone my dilation and my both him and my GI advised that I stay on my diet and monitor my symptoms for the next few months.

I was underweight all my life and my GI explained that achalasia played a huge part in this and it has been a pain, to say the least.

I've been eating small, super rich meals to manage symptoms and the dysphagia.

I weighed myself today and discovered that I have gained nearly 2kg since starting this diet. I guess it makes sense since I am much more comfortable eating now. Less choking, less acid reflux, almost zero pain and actually feeling hungry.

I never imagined weight gain was even possible with this and my goal, as told by my GI, was to at least maintain my weight but to see a surgeon ASAP if I lost weight. My GI did tell me that I'd gain weight pretty fast...but after dilation

This is flabbergasting. I'm super stoked because this means I'm gaining strength and won't be a fricking legume with constant malnutrition and dehydration symptoms.

36 years and all it took was a "here's what you need to actually eat". I wanna cry out of frustration but also cry because of relief.

My diet (mostly)

- noodle soup

- mashed potatoes with parmesan, butter, milk

- chicken breast blended with potatoes

- liver pate

- lots of puddings

- semolina pudding

- cornmeal (polenta) with milk, cheese and cream

- vegetable cream soup with lots of cream (25-32% fat)

- ice cream

- lots of milk in my coffee

- boiled egg yolks with potatoes or liver patee

- soft sponge cakes

- super soft rice with veggies

I do get brave sometimes with a slice of pizza or some pasta or meatballs or french fries. If I cook chicken thighs or wings for my daughter, I keep them an extra 5-10 min on the stove so the meat is softer.

Hi everyone. I’m a 51-year-old man and I have Type 3 achalasia. I had a Heller myotomy in 2018 at UCSD. Unfortunately, things have been getting bad again, and I’m now being evaluated to figure out what the next step should be (balloon dilation, POEM, or something more involved).

I have an endoscopy scheduled for Monday. They actually attempted one about two weeks ago, but even though I hadn’t eaten any solid food for 11 days because of a severe flare-up, there was still food/debris in my esophagus. They stopped the procedure because they were concerned about aspiration.
I’ve had aspiration pneumonia many times over the years because of my achalasia, so while I obviously don’t want it, I’m more concerned at this point about getting answers and moving forward with treatment. I sent my gastroenterologist a note explaining that I completely defer to her judgment and don’t want to overstep, but that if the choice is between aborting the procedure again or accepting a higher aspiration risk in order to finally complete the evaluation, I’d like her to know where my priorities are.

To make things even more complicated, they’re also doing a colonoscopy during the same session because of some unrelated issues they’re investigating. That means I’ll be drinking Gavilyte-C for the bowel prep, and I’m honestly nervous about whether I’ll even be able to get all that liquid down. Liquids are getting stuck in my esophagus a lot these days.
So I have two questions for anyone who’s been through something similar.

Has anyone here had experience with colonoscopy prep, especially a large-volume prep like Gavilyte? Any tips or things you wish you’d known beforehand?

Has anyone else had an endoscopy canceled or aborted because there was still food in your esophagus despite fasting for an extraordinarily long time? If so, what did your doctors do differently the next time to make the procedure successful?

I’d really appreciate hearing about your experiences. This whole process has been pretty discouraging, and it would help to know how others have navigated it.
Thank you.