Esophageal dysmotility

So much has happened since march ugh. I don't even know where to start. After this post I met with the neurospeach Dr which came back normal as well as the video barium swallow test. I also had and endoscopy which reveled a schatzi ring (sorry if I miss spelled that) and weak lower sphincter. He believes the mis to lower esophagus isn't functioning properly or the nerves aren't responding as they should so it's spastic. I also TRIED to have the esophageal manometry test. I failed miserably. I couldn't complete it because they couldn't get the scope thing down with out me throwing up. That was the worst hour of my life. That test is awful. The GI dr said I do have some moderate midesophageal dysphagia.

With all that said, they all refuse to do anything to help me because of my Ehlers-Danlos. So all they have me doing at this point is taking 40 mg of Prilosec 2x daily with 450 mg of ranitidine. That does seem so do anything either. I've resorted to sleeping in a recliner almost sitting straight up. I've restricted myself to almost a liquid diet because solid are just a sure way to be in pain. Not sure what or if they ever do anything.

Just as the refused to do anything, my septum collapse and created s bone spur in my left side of my nose and I can't breath out either side of my nose. Sounds great right? Stupid Ehlers danlos syndrome seems to have the upper hand here. We were trying to let my nose heal some, (I also have a large ulcer in my nose), but that didn't work and now I have exposed cartilage. So next week we are headed to mayo for surgery to get my septum rebuilt, a skin graft, and something for my valve support. Not really sure. Lol sorry

As far as Drs. I really like my GI dr. And my ENT. I have yet to find a neurologist within mayo or out of mayo that I like. They all act like they know everything even when u can show them they are wrong they don't wanna hear it. I gave up on neurology. Which sucks for me because of my neurology issues. I am like you that I prefer they don't dumb down anything because 90% of the time I understand just fine, expect with GI and the Ent. Man they speak foreign languages. It took me over 2 hours to understand my report from the ENT about my nose. The only thing I understood out of all of it was "her nose is severely screwed up". Maybe not so much in those terms but pretty much haha

So that's my chaotic life right now. Hopefully surgery goes smooth so I can get back on track with GI and nothing else gets screwed up along the way.

Man that all sound like a pain! I totally feel for you. My stomach valve stays 1/3-1/4 open pretty much all the time due to the weak valve and the hernia. I wish they would just fix one of the 2. Hopefully things don't start getting worse for either of us. It is awful enough.

Brie

I've been dealing with swallowing issues for over a year and a half now. They began after a course of beta blockers. After two manometry tests, 3 barium swallows and two endoscopies, i've been diagnosed with ineffective esophageal motility disorder and a sliding hiatal hernia. I also have pretty bad acid reflux. I have trouble eating anything that isn't liquid now. The only solids I can eat are saltine crackers, graham crackers and shortbread cookies, basically anything that's a meltable solid. As part of this issue, i get what feels like random electric shock sensations over my chest. They are quick and usually are a result of how I'm sitting or something I've eaten that's more solid. My heart has been ruled out, so these sensations are coming from the esophagus, i assume. Has anyone experienced this sensation as part of esophageal motility issues or hiatal hernia? Also, just doing another random check-in to see if anyone has ever been successfully treated for esophageal motility disorders. I sure do miss the luxury of solid food. Curious as to what doctors at mayo are good to see about esophageal motility disorders that are not achalasia. Thanks!

I have had acid reflux and indigestion problems for years. I’ve seen a gastroenterologist for years as well.

I have a genetic problem that I have to go to University of Iowa hospitals, for that is called Ehlers Danlos syndrome. I have a hyper mobility of joints, which there is no cure, but I have along with that a connective tissue disorder, which affects my collagen and healing

I have for the last couple years, felt different as if stuff was getting stuck at the bottom of my back of my throat or bottom of my neck. I would still go to bed a couple hours after I’ve had supper, and would be inclined, and still regurgitate. I can drink liquid and still bend over shortly after and it comes back up.

I have met with the surgeon at the University of Iowa hospitals, and he explained with my issue and having Ehlers-Danlos Syndrome that my risks would outweigh my benefits, and I could be worse off. He said because of my connective tissue disorder that collagen issue would allow me to not heal. I also had an emergency splenectomy years ago and he said I would probably have quite a bit of scar tissue inside, which would be difficult as well to do the surgery. In August I am going to have a device put on my esophagus and I have to wear it for 48 hours to measure the acid in my stomach. He said if that measures extremely high, he may rethink surgery.

After all of this, I’ve said, I guess I’m just wondering what kind of stuff I can eat. I have been drinking meal replacement shakes for the most part. I can eat salad because it’s not hard and crunchy. I eat yogurt. Otherwise I might as well forget meat, and bread of any sort.

If anyone has any ideas of a diet or food that I could eat, please let me know.

Thank you so much

I’m a healthy 67 year old female up until October 2024. I first was diagnosed then with acid reflux from pain in my chest, difficulty swallowing (globus sensation). I was put on PPI not feeling much relief. In January 2025 I had an endoscopy which came back normal. Was told by Gastro doctor to eat small meals, chew slower, etc. In February I had a manometry test showing I have ineffective esophageal motility. Told there is no cure or medication and just eat a prescribed diet. No more PPI and I am still in constant pain, especially in the chest no matter what I eat. I have lost 33 lbs since October down to 117 lbs. Doctors have not been helpful. I a as m terribly discouraged.

I’m a healthy 67 year old female up until October 2024. I first was diagnosed then with acid reflux from pain in my chest, difficulty swallowing (globus sensation). I was put on PPI not feeling much relief. In January 2025 I had an endoscopy which came back normal. Was told by Gastro doctor to eat small meals, chew slower, etc. In February I had a manometry test showing I have ineffective esophageal motility. Told there is no cure or medication and just eat a prescribed diet. No more PPI and I am still in constant pain, especially in the chest no matter what I eat. I have lost 33 lbs since October down to 117 lbs. Doctors have not been helpful. I a as m terribly discouraged.

I’m a healthy 67 year old female up until October 2024. I first was diagnosed then with acid reflux from pain in my chest, difficulty swallowing (globus sensation). I was put on PPI not feeling much relief. In January 2025 I had an endoscopy which came back normal. Was told by Gastro doctor to eat small meals, chew slower, etc. In February I had a manometry test showing I have ineffective esophageal motility. Told there is no cure or medication and just eat a prescribed diet. No more PPI and I am still in constant pain, especially in the chest no matter what I eat. I have lost 33 lbs since October down to 117 lbs. Doctors have not been helpful. I a as m terribly discouraged.

I’m a healthy 67 year old female up until October 2024. I first was diagnosed then with acid reflux from pain in my chest, difficulty swallowing (globus sensation). I was put on PPI not feeling much relief. In January 2025 I had an endoscopy which came back normal. Was told by Gastro doctor to eat small meals, chew slower, etc. In February I had a manometry test showing I have ineffective esophageal motility. Told there is no cure or medication and just eat a prescribed diet. No more PPI and I am still in constant pain, especially in the chest no matter what I eat. I have lost 33 lbs since October down to 117 lbs. Doctors have not been helpful. I a as m terribly discouraged.

I’m a healthy 67 year old female up until October 2024. I first was diagnosed then with acid reflux from pain in my chest, difficulty swallowing (globus sensation). I was put on PPI not feeling much relief. In January 2025 I had an endoscopy which came back normal. Was told by Gastro doctor to eat small meals, chew slower, etc. In February I had a manometry test showing I have ineffective esophageal motility. Told there is no cure or medication and just eat a prescribed diet. No more PPI and I am still in constant pain, especially in the chest no matter what I eat. I have lost 33 lbs since October down to 117 lbs. Doctors have not been helpful. I a as m terribly discouraged.

Thank you for the info. Apparently my esophagus doesn’t need to be stretched. No structure. Muscle contractions in the esophagus are too weak or poorly coordinated to move food efficiently from the throat to the stomach.