Esophageal dysmotility

Posted by Brie @brie87144, Mar 17, 2017

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.
---
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.
---

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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Profile picture for nicole0325 @nicole0325

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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Try pop rocks if you feel you are choking.

REPLY
Profile picture for nicole0325 @nicole0325

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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Thanks. I have never heard that

REPLY
Profile picture for nicole0325 @nicole0325

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

Jump to this post

When my mom had difficulty swallowing I prepared scrambled eggs, lean bacon and buttered toast and put it all in a blender . Half the toast worked better as less absorption and more moist .

REPLY
Profile picture for nicole0325 @nicole0325

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

Jump to this post

I hope I am in the right place. I have dismotility had a manometer test done it came up lack of perastaltis in my esophagus this makes it hard to swallow at times. I have to sit up straight with a pillow behind my back. What helps me is sitting upright in a chair and not laying down for about an hour. I'm only allowed soft diet and liquids. I'm missing salads lol but I'm concerned I'm not getting enough vitamins. Any suggestions on how to get some in my diet?

REPLY
Profile picture for fiery @fiery

I hope I am in the right place. I have dismotility had a manometer test done it came up lack of perastaltis in my esophagus this makes it hard to swallow at times. I have to sit up straight with a pillow behind my back. What helps me is sitting upright in a chair and not laying down for about an hour. I'm only allowed soft diet and liquids. I'm missing salads lol but I'm concerned I'm not getting enough vitamins. Any suggestions on how to get some in my diet?

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Survivor of esophageal cancer / esophagectomy etc: 2020
Recently completed chemo & radiation after cancer found in my throats very very close to larynx. Needless to say my poor throat (interior) is burned and pretty sore. Makes it a nightmare to swallow.
I drink either Ensure or cheaper equivalent: Equate (Walmart brand). Although it could taste a bit better it's do'able. Look at all the "good stuff" in an 8 oz bottle. I drink at least 2 / day.
Good luck!!!
Lori

REPLY
Profile picture for nicole0325 @nicole0325

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

Jump to this post

Sounds like dysphagia, I have it, also have esophageal cancer. You should get scans, cat, MRI pet and look into a g tube feeding tube in your stomach so you can get nutrition without irritation of your esophagus. G tube surgery is fast, removable and they are easy to use. I have one. I gravity feed formula, shakes, water... But take this situation seriously. Blessings to you.

REPLY
Profile picture for nicole0325 @nicole0325

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

Jump to this post

I have esophageal dismotility with no peristaltic movement. My diet consist of soft food no fresh fruit or veggies and no bread. I have to drink with my meal and eat small bites and chew thoroughly. If I eat to fast and don't drink with my meal I feel like I'm choking. Several times I ended up in emergency and one of those times I almost died.

REPLY
Profile picture for nicole0325 @nicole0325

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

Jump to this post

I completely understand, I have dysphagia and esophagus cancer. A removeable G tube feeding tube in my stomach fixed the issue. Contact a gastroenterologist and discuss it. You'll do only liquids with it but no mo choking. Have had mine since last early October and my weight is 135 and healthy

REPLY
Profile picture for fiery @fiery

I have esophageal dismotility with no peristaltic movement. My diet consist of soft food no fresh fruit or veggies and no bread. I have to drink with my meal and eat small bites and chew thoroughly. If I eat to fast and don't drink with my meal I feel like I'm choking. Several times I ended up in emergency and one of those times I almost died.

Jump to this post

I've been doing high calorie, high protein, high hydration liquids with my G tube without much issue. If you clog it, take it out, flush and reinsert

REPLY
Profile picture for nicole0325 @nicole0325

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

Jump to this post

I was put on a liquid diet after an Esophageal Dilation and I totally understand the frustration of trying to find things to eat. I found potatoes and sweet potatoes to be a good option. I just made sure they were whipped up to a light consistency with no lumps.
I added plenty of milk to regular potatoes and can also make them into a creamy soup.
With the sweet potatoes, I added a little butter and brown
sugar (of course) and made sure to "smooth out in my mouth" when eating to strain out any stringy fibers of the potato.

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