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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 from @darlia
I have recently been diagnosed with Ineffective Esophagial Motility Disorder.. or IEM, I am told. My Gastroenterologist told me that there is not anything to do for it, so I try to be careful to be very aware of chewing and swallowing. I can choke easily on food, drink pill or nothing!. I've been tested with many swallowing tests which all come back to say that I don't have any blockage or problem other then the IEM. I do also have GERD, Gastroparesis and sliding hiatal hernia and am currently taking Pepcid only at night, I think 40 mg. I've had the swallowing issues for most of my life and I am going to be 59 soon. IN a couple of weeks....so I am just looking for any help here from anyone who knows more about it and this looked like a good place to ask. I publish on Neuropathy, Autoimmune and Digestive Health too. I started a post titled FGFR3 Antibody in the Neuropathy group which I also have been diagnosed as having which is the cause of my Peripheral Neuropathy.
I did take years ago Prevacid and after taking it for many years, I told my Dr,. that I should not, because I only have one kidney as it is and it reported that it could cause kidney problems. She agree and put me on the Pepcid. It amazes me how we have to be our own advocates when it comes to the meds we are prescribed. It can cost us our life if we don't!
Darlia
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2 Reactions@darlia
Have you seen a speech therapist? I was referred to one, and I found that the exercises she gave me helped with my swallowing difficulties, which frankly surprised me. I also started taking a decongestant, and that helped with the constant mucous drainage. The speech therapist said that mucous builds up in my throat causing the food to slow down as it made its way to the stomach. I was always needing to swallow the drainage, and sometimes I just couldn't.
Like you, I have to chew and chew and chew, and drink only sips at a time, no straw (it propels the liquid to the back of the mouth too quickly), and no carbonated drinks. I fudge on that when I eat out. Liquid can get into the vocal folds, too, almost like aspirating, if the folds don't block the liquid as they're supposed to.
I never gave a thought to swallowing - it's usually a job that happens automatically. Age certainly has changed the way I do a number of things. I'm 67. I try not to think about that too much because it makes me think about how close I am to 70, and I guess that makes me feel old.
Jim
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3 ReactionsHello @jimhd and @darlia
I agree with speech therapy and practicing the exercises they give you. I have a paralyzed vocal cord and had surgery to "fill-in" the floppy cord. Prior to that swallowing and speech was very difficult and at times frightening. While it has been several years since the surgery I'm still careful with swallowing (eating small mouthfuls like Jim said) and watching the quantity and types of liquid. it all does make a difference.
Teresa
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2 Reactions@darlia
Good for you! You have learned an important lesson - being our own advocate is vital to our health. That is a real important lesson for us all. I always read reports from tests and ask questions and research on my own.
Teresa
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1 Reaction@tryingtofindanswers Hi, thanks! I’m still struggling. Trying to find a new doctor that might be able to assist more, or at least be compassionate. I’ve lost 60+ lbs and all doctors tell me is that I have ineffective esophageal motility disorder and it can’t be treated. They tell me it’s “mild” and I need to learn to deal. I can’t really eat solids. My diet is crap! They even said nutritionists can’t help me ugh. So I am literally here on my own trying to figure out how to eat to stay nourished, hydrated and keep myself from going nuts.
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1 ReactionThank you for checking in with us, @tryingtofindanswers. I am sorry to hear that you still do not have an answer to your problems. I encourage you to keep advocating for yourself.
Teresa
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1 ReactionHave you tried baby foods? Some are quite good. Expensive, tho.
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1 Reaction@tryingtofindanswers
What kinds of food can you eat? Have you tried exercises for the base of your tongue or throat? I thought it was kind of weird, but they have made a difference in my ability to swallow. A speech therapist gave me the exercises and gave me a lot of helpful information. I still have to be aware of how I prepare to swallow (the base of my tongue doesn't move normally) and how I swallow. Our magic bullet makes it possible to eat things.
Jim
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1 ReactionAnyone who has had EGD WITH BOTOX INJECTIONS? Results ?
Hi @rinstaffordaz,
You may notice that I moved your discussion and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to the many members who have discussed their experiences related to EGD (esophagogastroduodenoscopy).
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their loved ones' experiences.
I'd like to tag @cab26, who recently shared results of an EGD, and could perhaps offer some more information.