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Esophageal dysmotility
Hello I'm not sure this is where I should ask or not but I need help understanding what all this is telling me and if anyone knows possible treatments or outcomes. I'll give a little bit of history. I've only had what I know as swallowing issues for the last 4-5 months at most. Sometimes I can't even get things to go down into my throat at all, other times I can but whatever it is just gets stuck and that's consistent. I've had chronic heartburn since 2006 ish and been taking Prilosec and or 300mg of Zantac daily since. Which neither of these mess seem to help. But they help better than anything else I've tried. I also have a condition called Ehlers-Danlos syndrome which is a collagen disorder, and I have type 3 (hyper mobile) with mild over lapping of type 4 (vascular). I also have POTs and other autonomic dysfunction. With that being said, I was sent to GI for a consult and so far have had the pudding esophageal motility test, and the Barium swallow X-ray. They have both come back abnormal. The esophageal motility test says:
Esophageal Motility
IMPRESSION: Esophageal transit is normal for water but delayed at mid esophagus for thin and thick semisolid boluses.
FINDINGS: Esophageal transit scintigraphy performed per protocol. Graphic processed scintigraphic display reviewed in addition to the dynamic imaging.
WATER BOLUS: The water bolus passes normally into the stomach within 10 seconds.
BOLUS 1, THIN SEMISOLID: There is hang-up of the thin semisolid bolus in the mid esophagus and at the junction of the mid and lower third, with the tracer in the mid esophagus clearing after 25 seconds and the residual activity in the distal third of the esophagus clearing x 45 s.
BOLUS 2, THICK SEMISOLID: The thick semisolid bolus shows considerable retention in the mid esophagus which predominantly clears after the second dry swallow at 40 seconds.
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The Barium swallow X-ray says:
Esophagus
Moderate esophageal dysmotility is present with interrupted primary peristaltic wave, intermittent ineffective secondary peristaltic waves which are nonpropulsive. Subsequent peristaltic waves then stripped the barium bolus normally.
There is a small hiatal hernia present with free spontaneous gastroesophageal reflux noted with esophageal distention to the thoracic inlet. There is however no ulceration, stricture, or mass present. Barium pill was administered, which passed freely through the GE junction into the stomach.
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My Drs impressions says esophageal motility disorder with cervical and esophageal components.
My question is what is this all telling me. I keep looking things up but then get super confused and mixed up. I still have to go back for a upper endoscopy, an esophageal manometry, neuro speech assessment, and a video X-ray barium swallow. I can't find anything on the speech assessment. And I'm not understanding why I have to repeat the barium test? Since medicine isn't working what are some of the treatments or fixes to any of this. Can my esophagus just die? What happens if it stops working all together?
Sorry for the long message. I don't live near Mayo and have to travel to get there so I don't get a lot of time with the drs to ask these questions. They are just more concerned getting the tests done before they make sense of it to me it seems, and I am super lost and confused. Any help would be greatly appreciated
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Hello @kaykay729. Have you considered a second opinion if the diagnosis just doesn't seem right based on your symptoms?
The SIBO diagnosis was found with a boost on the small intestine during an EGD. I don't disagree with that diagnosis but I don't have the symptoms like I read about other people having. Now I am diagnosed with Ineffective Esophageal Motility with the doctor telling me nothing can be done about it. I would like to find other people that have this so I can understand how to eat and maintain caloric intake and in fact if it's true that nothing can be done.
I was told yesterday by the head of GI and Esophageal Motility DIsorders at Vanderbilt that there is no cure for esophageal paralysis. Spasms, which I also have, there is some treatment (botox,and a couple of pills) but that too is hard to treat. I have PPI's for GERD, and the long term effects concern me. So, this is very discouraging and I hear her sense of defeat. I am 56 and had an esophageal rupture several years ago, so the nerves were severed and cannot be 're-ignited'. Having doctors say to you 'sorry, nothing much we can do' is very hard to hear.
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2 Reactions@megoreilly - I totally agree. To hear that nothing can be done to treat or improve a quality of life problem is devastating.
With esophageal paralysis there is no nerve function. You have spasms too= there is some nerve function.
I have GERD too and have been on rotating PPIs for years. I know if I don’t take them, reflux with acid will be back- and then I have to worry about Barret’s esophaguses.
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1 ReactionHi jim, I had swallowing problem with Esophagus blocking at bottom sphincter in Jan. 2021. Went to Dr. and he did a balloon insertio into lower esophagus. That helped for a few days and swallowing was very difficult again. I thought i could come up with a better treatment than that, and after about a month of trying various excersises and movements I found one that worked.. I tried out two different techniques for 4 weeks before I was positive that they worked every single time. The best one is to sit on a cushioned seat or stool.Raise your butt up off seat 6 or 8 inches using both hands on the seat, then come down on the seat as hard as you can and repeat several times til you feel the food clot has moved down and into stomach. If i have a blockage while eating, I immediately do the manuver 6 or 8 times or more. The food went down and I resume eating. Some foods are easier than others but they all move down with enough impacts.The more force you put into the impact the better. I have done these moves now for about ten months with no soreness on butt or any problems. The reason the food is forced down the esophagus is in the laws of physics, momentum.
I have exactly the same as you , failed 90% swallows. I have been put on Amitriptyline and azrthmycin and it is improving slowly. I wonder how you are getting on now ? I know this is an old post
My brother had same issues and saw may specialists from ENT to Gastroenterologists , etc … had many tests . Lived off soup and smoothies and ice cream for 2 years. He’s been put on low dose prednisone recently and it’s helping him as he can handle pasta and veggies cooked well and tiny amounts of bread as long as it’s dipped in a sauce or olive oil. This has been a long journey and it’s not over yet .
I have 7 Gastro issues diagnosed and live in chronic conditions daily and nightly 10 yrs . It’s horrendous. Too much to get into but no one can help me . Best wishes on your journey.
You definitely need to buy lots of vitamins and put in your smoothies. I think they saved me until I had the Poem.
God bless you!!
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
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2 ReactionsHave you tried to eat small meals, very small bits and chew them like a hundred times? I recently had a nissen fundoplication surgery and since my esophagus was very swollen, I had to be on a liquid diet for a couple of weeks and then start very slowly and sometimes I did feel that food got stuck in my throat but eating small meals, small bits and chewing many many times really helped..