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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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Hi, @floridiananna - since ineffective esophageal motility (IEM) is a type of esophageal dysmotility, I've moved your post here so that you can chat with more members who have common experiences with you and are talking about this topic.
So glad you connected with @jlharsh, and I'm hoping you can also talk with others in this discussion such as @kcareconnections @nascar4433 @lenka73 @bla1958 and others.
floridiananna - you mentioned that your IEM started with swallowing issues. Are you now experiencing other symptoms, as well? If so, what symptoms are you having?
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2 Reactions@lisalucier
Thank you for including my "handle" for @floridiananna . I'll likely have a rather lengthy response, so I will do it within a couple of days. Just had my 10th EGD w/Dilation + Kenalog injections into Schatski's Ring today, so need a day or 2 to recoup.
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2 Reactions@nascar4433 I had forgotten about the Schatski's Ring I have or had. Noone has mentioned that in a long time.
I have multiple (stacked) autoimmune issues now. Food is still not my friend. My esophagus has been stretched many times since I was 16.
I had a Neilson Fundalipcation 20 years ago but it kept acid down for only about 5 years.
Slow motility in esophagus and small intestines, add Chron's crazy.
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1 ReactionThe speech pathologist is the one that checks your tongue and mouth swallowing issues. Checking before the esophagus to make sure what you swallow stays out of your lungs.
I forgot to add, a fistula formed in my esophagus. So when a Barium swallow was done, it looks like 2 pipes going down, not one. Everything now eventually goes to my stomach except the Barium pill stopped.
I have Barretts, Chron's, Lupus,Lupus Anticoagulation etc. One would think I was thin, nope body thinks I am starving.
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1 ReactionI was just diagnosed with a sluggish esophagus after a barium swallow.
I’ve had this problem for a long time, and I’ve had several Endoscopy’s over the last 5 to 10 years which have shown nothing.
However, swallowing is difficult at times and I have to use water to get my food down my throat unless I take extremely small bites of food.
I have never been a smoker or a drinker.
Of course I have concerns because this has been going on a long time, I have some acid reflux, but not a lot that I know of. I get heartburn from time to time. It’s mainly more of the swallowing aspect of it..
The thing I like about Mayo Clinic is they don’t scare you, like Dr. Goggle does.
I do have two thyroid nodules, and I had ACDF surgery through the front of my neck.
I’m praying that this isn’t terribly serious because it’s been going on for a long time undiagnosed.
If anybody has any feedback, I would welcome it. Thank you very much.
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2 Reactions@calygirl84 - I wanted to let you know I moved your post here to where others were discussing a very similar topic:
- Esophageal dysmotility https://connect.mayoclinic.org/discussion/esophagus-issues/
Hoping members such as @ryman @hopeful33250 @jimhd will have some input related to the challenging swallowing at times, @calygirl84.
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1 Reaction@calygirl84 Hello. I was diagnosed with ineffective esophageal motility almost a year ago after dealing with globus sensation and burning sensation in my chest and upper back and a endoscopy that showed nothing. I did have an esophageal motility test which showed a slow swallow. (I don’t know how anyone passes the test lying down with someone shooting water into your mouth and then swallow normally). Gastro told me to live with it and eat slowly and mostly soft foods. I’ve lost 40 pounds worrying about what to eat. I do eat slowly and no dry foods. If bread, I take sips of water to chase it down. Thinking about it makes it worse. Hoping to find another doctor to help. Be patient with yourself. Try to pace your eating and seek out more medical help. Hope each day gets better.
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3 ReactionsI have esophageal dysmotility, as well. Sometimes meals just take time and patience. Small bites, lots of chewing. I avoid untoasted bread. It gets gummy and hard to swallow. I never use a straw because it propels the liquid too quickly to the back of my mouth, and I rarely drink carbonated drinks. When drinking, I swallow it twice.
I don't chase things down with liquid because it makes me aspirate.
Where does food stop? For me, it can stop at any point from above the upper sphincter to the lower sphincter, and anywhere in between. The rings of cartilage in the throat are supposed to fire in sequence, but mine fire at random, slowing down the process.
Have you seen a speech therapist? They have a number of helpful exercises and good advice.
Jim
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