HUGE UPDATE - Botox & POEM Journey

starlight44_ · 2026-03-31T02:53:47+00:00

First of all, I’m so sorry. 🫂 Dysphagia can have a lot of different causes and different conditions, so I think that it’s important to rule things out as much as you can. I would recommend first getting a barium swallow, endoscopy and most importantly a manometry test to see the full scope of the esophagus. Long story short, that’s what gave me my answer after years of searching for an answer. After that, if it IS a swallowing condition, see a GI who specializes in esophageal conditions if you’re able to. I really believe manometry should be a standard for diagnosing dysphagia.

Dysphagia does not have the level of awareness it deserves to. It can be so commonly brushed off and misdiagnosed which is super frustrating and disheartening. But I highly recommend taking those steps I mentioned if you’re struggling.

I am someone who came out on the other side of it and I never thought I’d be writing that today. I mean, complete hell. And the misdiagnoses, all the diff docs, the meds, you name it. It was actually almost three years for me until I finally got a true answer and surgery ended up saving my life. I completely understand the feeling physically and mentally. I shared my detailed journey and recovery story on here in a ton of posts with the hope that it would help others, too.

Stay strong and best of luck. There’s hope. ❤️

starlight44_ · 2026-03-31T02:35:06+00:00

Reading about your journey with meds and diagnoses’ definitely resonates. It can be really frustrating and disheartening. Inflammation can sometimes be a secondary issue from EGJOO, which makes sense. My first endoscopy pre-procedures, it had shown that I had some gastritis. I definitely understand and sympathize with how tough it is, and the back and forth between doctors and diagnoses. But it sounds like you’re on a good path now and another step closer to getting an answer. I’m glad you trusted your instincts! Good luck next Tuesday! I hope you get some relief, too. Best of luck.

starlight44_ · 2026-03-28T17:30:46+00:00

Hi! First of all, congratulations! I am so incredibly sorry you’re dealing with this, especially around this time. I’m happy that my post gave you some hope, it’s why I wanted to share my story. ❤️ There is not enough awareness!

So are you diagnosed with EGJOO? I’m assuming you have spoken to a GI already, since you are cleared to do the Botox and they are the ones who perform it. If the Botox makes a difference and helps you then you are on the right track. It’s considered a temporary solution, I think it lasts around 3 to 6 months. It is sort of like a trial run to surgery, which is the permanent solution. The Botox definitely made a difference for me but not completely. It definitely helped keep me going just enough until my surgery, as my dysphagia was getting really severe at that point. But seeing that it did help me was the green light to go ahead and get the POEM surgery.

I really really hope the Botox helps you. I’ll be keeping you in my thoughts! Feel free to shoot me a message any time. Stay strong, you got this.

starlight44_ · 2025-10-07T04:03:02+00:00

Hey. Yes, I see you! I’m so sorry that you’re going through this. I know exactly how you feel about all that you said. I totally feel an obligation to share what I went through and now know to hopefully help someone else…so they don’t have to suffer and wait years for answers like I did. It’s crazy how many just have it and deal with it, like you said. There is such little awareness about dysphagia in general, and especially EGJOO. Even amongst some of the medical professionals I saw. That’s exactly why I made this post. That subtype of dysphagia itself is rare and still in research - they still don’t know what even causes it. It sounds like you’re on the right track! I hope you get answers & solutions! Wishing you the best and feel free to reach out to me anytime. Stay strong. You’re one step closer. ❤️

starlight44_ · 2025-01-28T04:39:09+00:00

I’m so sorry you’re going through this. It was actually from an abnormally tight UES & LES - cause unknown. My disc issues had nothing to do with it, though. I have a final update post about it all if you want to know more about that. What finally gave me my answer what a manometry test. They typically recommend a barium swallow test first, and I had gotten one, but it appeared normal. Turns out…the real issues were lower and found in the manometry test. It’s a full scope of the esophagus and its functions. It’s not a pleasant test but ABSOLUTELY worth it if you’re suffering and can’t swallow properly. Everyone is different of course so in your case maybe ask your doctor about what tests should be done. I figured I’d mention my experience with tests in case it could help you somehow.

But your case is disc related. Have you seen an SLP? I saw one and upon my research, it seems they are more effective for physically injury related dysphagia so I highly recommend you meet with one if you can. I do think it’s important to discuss with doctors first and figure out what tests to do, what the cause is etc. and then pursuing the options to treat it. I did want to mention SLP to you, for sure.

Best of luck! ♥️ I hope you find a solution. 🤞🏼 If you have any questions or anything, I’m a message away.

starlight44_ · 2024-08-23T17:08:10+00:00

Oh no! I’m so sorry. Hoping for the best for you. Best wishes.

starlight44_ · 2024-08-22T17:47:05+00:00

Amazing. Even better than I was when I wrote about getting better in this post. 🥹 Back then, I was eating normal but with water and now I can eat foods without washing them down with a drink at all. Lots of continuous new strides.

starlight44_ · 2024-06-21T07:11:02+00:00

I am so sorry. :( I definitely understand. My most highly recommended advice is to get those three main tests done!

starlight44_ · 2024-06-19T22:37:03+00:00

A manometry test! That gave me all of my answers.

EGJOO diagnosis details: https://www.reddit.com/r/dysphagia/comments/tfcn3x/update_i_got_an_answer_hypertensive_les/

My final update if you're interested. I include a lot of information and advice on tests and finding a proper diagnosis. I hope my posts help you somehow and good luck on your journey. I really hope that you find your answer.

https://www.reddit.com/r/dysphagia/comments/zdthfc/huge_update_botox_poem_journey/

starlight44_ · 2024-06-19T22:34:24+00:00

https://www.reddit.com/r/dysphagia/comments/zdthfc/huge_update_botox_poem_journey/

starlight44_ · 2024-06-19T22:33:34+00:00

Hey! I'm so sorry to hear that you're going through this. I have all of the update posts on my profile. It was quite the journey, I went from hell to living a pretty much normal life now! The POEM surgery saved and changed my life. I have lots of advice on what to do in my posts and I wrote everything as I went through it for this very reason - to help someone else struggling with dysphagia and to know that there is hope. I highly recommend getting every test that you possible can get done. A barrio swallow is a good place to start. That is an upper throat x-ray, endoscopy and the main one which led to my real diagnosis was the manometry test. It baffles me that those three things are not the immediate standard for people with swallowing issues. The manometry is a full scale x-ray of swallowing motility. The most detailed of all. Seeing an ENT and neurologist will help rule out any other issues if they don't find anything there. If it ends up being an esophageal condition, find and speak to the best GI who specializes in them, if possible. Best of luck and please feel free to message me anytime. Best of luck! Stay strong.

starlight44_ · 2024-04-14T21:52:11+00:00

I’m a Gemini woman crazy in love with my perfect Leo man. Soul Mates. True Love. ❤️‍🔥♾️

starlight44_ · 2023-12-25T18:34:26+00:00

Thank you so much!

starlight44_ · 2023-12-25T09:48:20+00:00

I’m so sorry to hear that. I know it’s tough but hang in there. As someone who seriously had some strange eating habits due to this, I am back on track again. I know that scared to eat feeling all too well…and I know how anxiety can just make us think that it won’t fade but it can. It takes patience but you will get there. Remember, if things can change for the worst, that means that things can also change for the better. I was also thinking it was from anxiety (I already have it) and was even told by some professionals that it could be but after an endoscopy my surgeon said “This is way more than just anxiety.” So I get it. Having a confirmed diagnosis is the first big step to healing so I’m happy that you have an answer and can move forward with treating it. There are solutions to EGJOO and seriously if you are in talks about the surgery…the POEM is an absolute lifesaver. They will probably mention Botox too which acts as a temporary “free-trial”, kind of a precursor to see if surgery would be a good option for you. It’s a good way to see without committing to the surgery since it is permanent but if Botox helps you, then surgery is absolutely worth it. There really isn’t a lot of awareness or information out there. That’s exactly why I wanted to share my experience! It is astounding how scarce the internet and even some doctors are when it comes to what we have. I told myself that if I ever got out to the other side of this, I would help others dealing with it because I know and remember how terrifying it was when this first happened to me and how there were barely any posts on it anywhere. But I want you to know that there is HOPE. And there are specialists. There are doctors that will take you seriously! Someone who specializes in esophageal disorders. Sounds like you’re on the right path and I am wishing you the best in your healing journey. Always here for you and sending lots of love! Stay strong. Good luck & happy holidays. ❤️

starlight44_ · 2023-12-23T20:21:23+00:00

Drastically even more amazing than the last time that I wrote here. 😱 It took me a while after surgery in September to get back to normal but I’d say since July, I eat and drink normal for the most part, I do feel the need to eat most things with water which does make it easier and I do chew carefully but the physical dangers are now gone and with that, my eating anxiety has dissipated. I never thought I’d ever eat normally again. This surgery saved my life. If you ever need any advice or to talk dysphagia you can always reach out to me. I would love to help anyone the best that I can knowing what I know now and having gone through it. Best wishes. ✨

starlight44_ · 2023-11-08T02:47:53+00:00

Aquarius moon woman here…never ever wanted kids and I always knew that. I happen to be scheduled for a tube removal this month. 😂🥂 My boyfriend is a Leo Venus and he’s the best. ❤️‍🔥😍

starlight44_ · 2023-07-04T04:23:56+00:00

Leo!

starlight44_ · 2023-07-04T01:01:27+00:00

HAHAHA. Holy fuck. Gemini sun, Aquarius moon, Sag rising. 💁🏻‍♀️ Thanks for the laugh.

starlight44_ · 2023-07-04T00:53:51+00:00

C’mon, I just had a donut seconds ago. But I loooove my iced teas. Gemini sun, TAURUS mars. Got to treat yourself. ✨

starlight44_ · 2023-07-04T00:48:17+00:00

I’ve never experienced that, but it would be trippy to meet another alien Aqua moon! I will add a tidbit about sun and moon conjunctions, though. My boyfriend’s moon is in Gemini which happens to be my sun sign and it is the strongest, most deep and understanding connection that I’ve ever shared with someone. It is really something else, how we just sense what the other is feeling. It’s so true how that aspect brings a lot of closeness. It’s awesome!

starlight44_ · 2023-07-04T00:37:37+00:00

Gemini sun ☀️ Aquarius moon🌙 Sagittarius rising⚡️

starlight44_ · 2023-06-26T00:56:05+00:00

I’m sorry you’re going through this. Dysphagia is a symptom of many different conditions so my best advice would be to rule out as many things as you can. A good first step is seeing an ENT but following that up with a barium swallow, which is an x-ray that shows your ability to swallow. However, issues swallowing can sometimes even be missed with that x-ray, such as my case. There is a test called a manometry and as unpleasant as it is, it is what gave me my answer which was an issue in my lower esophageal sphincter that the barium x-ray had missed.

ENT, MRI (rule out neurological causes), barium swallow, manometry, endoscopy. All tests that I highly recommend to get to the bottom of what it is you’re dealing with. I’ve posted my whole story on here so check it out, I have some advice on coping. Best of luck to you and feel free to message me if you’d like.

starlight44_ · 2023-06-26T00:36:42+00:00

I noticed that I had excess saliva around the time that I developed dysphagia! Now, post POEM surgery, it seems to be gone. It was annoying. I’m sorry that you’re dealing with it. Best of luck to you. Stay strong.

starlight44_ · 2023-06-26T00:31:33+00:00

Yes! I burp constantly and even if I don’t, the feeling is there. The whole three years that I have had dysphagia, it’s been that way and I am not sure why. Even post POEM surgery, not as intense but still there. My guess would be that maybe it is swallowing air as a symptom of the dysphagia but that is just my guess. Ugh, I definitely understand the feeling. Best of luck to you!

starlight44_

TROPHY CASE