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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

Interested in more discussions like this? Go to the Digestive Health Support Group.

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muggsy | @muggsy | Sep 19, 2019
In reply to @fourof5zs "@muggsy I do not remember seeing this diagnosis before. I looked it up and read this..." + (show)
Profile picture for ZeeGee @fourof5zs

@muggsy I do not remember seeing this diagnosis before. I looked it up and read this article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950665/ It may not help you, but may help others understand why they are prescribed an antidepressant. Many believe their doctor thinks their condition is “all in their head” when prescribed one. They do have other uses other than depression.

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Hi, Thank you so much for the information... I have heard of the antidepressant regiment... I did try very small dose of one awhile back and it worsened another issue I have... so I don't know what to do...as this has gotten significantly worse!

REPLY
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pdilly | @pdilly | Oct 17, 2019

Does anyone experience burning in their throat when they eat or drink? I’m not talking about heartburn down in the chest area — this is in the upper esophagus. I’m asking for a friend who has this condition. None of the docs she’s gone to have been able to figure out the cause.

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2 replies
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bonnieh218 | @bonnieh218 | Oct 18, 2019
In reply to @pdilly "Does anyone experience burning in their throat when they eat or drink? I’m not talking about..." + (show)
Profile picture for pdilly @pdilly

Does anyone experience burning in their throat when they eat or drink? I’m not talking about heartburn down in the chest area — this is in the upper esophagus. I’m asking for a friend who has this condition. None of the docs she’s gone to have been able to figure out the cause.

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Yes I do. My dr says for me it’s part of my reflux disease. They literally call it throat burn. I’m seeing my gi again in November to revisit that issue. In the mean time I’m told to use a lozenge to soothe the area and NSAID if any pain continues. I’ve also been told the back of my throat is red and scaly from being too dry.

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pdilly | @pdilly | Oct 18, 2019
In reply to @pdilly "Does anyone experience burning in their throat when they eat or drink? I’m not talking about..." + (show)
Profile picture for pdilly @pdilly

Does anyone experience burning in their throat when they eat or drink? I’m not talking about heartburn down in the chest area — this is in the upper esophagus. I’m asking for a friend who has this condition. None of the docs she’s gone to have been able to figure out the cause.

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Thank you for replying @bonnieh218 ! She’ll be so glad to know that at least one other person in the world has this! She doesn’t have reflux or redness. Just the burning sensation. I’ll be looking forward to hearing what your doc says at your November appointment.

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pumpsi | @pumpsi | Dec 21, 2019
In reply to @sickvick "I feel your pain. I, too, have a swallowing disorder, though they don't know why. I..." + (show)
Profile picture for sickvick @sickvick

I feel your pain. I, too, have a swallowing disorder, though they don't know why. I have Laryngospasms and benign multinodule (5) goiter on my thyroid. Lost my gall bladder years ago. Have mesh implants from 5 lb. Messenteric abdominal cyst removal and ventral hernia that followed and have had a nissen fundoplication and a toupet fundoplication... which is to connect my esphogus and my stomach. Last surgeries at the end of 2016. Now deal with worse dysphagia, dumping syndrome and positonal pains. Now have intestines pushing up into chest area.
For the 3 years I have been on a semi solid diet. Mostly the things you mentioned... Nilla wafers dissolve in your mouth and are easy to swallow. Also just found liquid greens... veggies. Not too bad. But sometimes I choke on air... so food isn't always the enemy. I, too, struggle to find some more items to eat again, but slowly realizing I may be stuck with what I have found. Swallowing pizza is impossible. I have lost around 97 lbs. and am in need of more nourishment but protein drinks make me ill, too. It sucks. I hate my food life. I hurt all over. Being skinny is NOT fun. It hurts. I walk through the grocery store like a zombie... no, no, no... I cant swallow that or digest that. BUT... There is a new product I tried... though it tastes not great, yucky actually, but you might like it... it is good for you totally. It's called Huel. A powder. Nutritionally complete food. 500 calories per cup. Jazz it up and drink it or use powder in your pudding or soups. And the meats I do eat... I cut into teeny tiny portions and then chew the heck out of them. Puree... agreed... barf! I am rooting for you! Post if you find something good... I will try it too! I am 57 & female, by the way. My thoughts are with you. I didn't get much sympathy or help from my surgeons, either. Learned most on internet unfortunately.

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Hi, I am 83 years young and have had problems swallowing and severe Esophagus spasms since I was in my mid twenties . Now for the past several years it has gotten worse and was twice at the emergency hospital because my food was stuck from top to bottom . Just had an Endoscopy and was diagnosed with Candida Esophagus and Achalasia . It was recommended to have a Mobility study done, but from what I read there is no cure for it. Maybe some surgery for younger patients , which I am not .I also suffer from Gerd . What I am doing now is to avoid meat because it's the biggest problem and if I eat some very tender ground meat, I chew and chew it to a pulp and drink water after every bite. I had to learn to concentrate on every bite . My Esophagus spasms are less since the doctor prescribed a heavy dose of anti acid medication daily . My son , 60 years of age is starting to have the same problems . Maybe genetic .

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 21, 2019
In reply to @tryingtofindanswers "Hi I’m a 39 year old woman and I’ve got ineffective esophageal motility disorder, with spasms...." + (show)
Profile picture for Cam @tryingtofindanswers

Hi I’m a 39 year old woman and I’ve got ineffective esophageal motility disorder, with spasms. My manometry showed 90% failed swallows. I can eat certain things like liquid drinks, smoothies, puréed soups and some solid foods like meltable solids such as shortbread cookies, cheetoh puffs, crackers,frozen yogurt, yogurt and basically anything you can give a baby. My doctors have told me there’s nothing they can do for me, that I’ve got to learn to deal and a nutritionist won’t be helpful. Ugh. They’ve been zero help. All they did was put me on Omeprazole and say it won’t get better and just hope it doesn’t get worse. So I’m looking for food ideas from others with this issue. I think from googling on my own I’ve realized maybe I can do mechanical soft, but I’m scared as when this began my swallow reflex would stop when something solid would get stuck and I don’t want to go backwards since I have to work full time and maintain my energy. I’ve been suffering with this for two years and lost a violent amount Of weight at first, so much so that my gall bladder went bad and had it removed in June. Ugh. It’s so hard “living” like this and these food holidays don’t help. Ugh. I’m tired of feeding my body liquid sugar and junk food because it goes down easy. I wish I could just bake a chicken breast and some broccoli. I’ve tried pureeing my food but I wanna vomit with puréed meat. Ugh. Any assistance with ideas for more solid/soft food that goes down for those with esophageal motility disorders would be beyond appreciated. Thank you.

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@pumpsi - You found the right place to maybe learn more about your esophagus problems- welcome to Connect! As you may have seen, your post is in a thread with different esophageal issues. It must be very frustrating just to eat.
First of all, let’s not assume there is no cure, but there may be new methods to alleviate the process of swallowing. Therefore, it may be a good idea to go ahead with a motility study. Are you being treated for the Candida? I have had Candida esophagitis and it is very uncomfortable. I also know what it feels like to have esophageal spasms- panic! I had it for a while after surgery but not since.
I hope your son gets treatment too.

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Mentor
Jim, Volunteer Mentor | @jimhd | Jan 10, 2020
In reply to @tryingtofindanswers "Hi I’m a 39 year old woman and I’ve got ineffective esophageal motility disorder, with spasms...." + (show)
Profile picture for Cam @tryingtofindanswers

Hi I’m a 39 year old woman and I’ve got ineffective esophageal motility disorder, with spasms. My manometry showed 90% failed swallows. I can eat certain things like liquid drinks, smoothies, puréed soups and some solid foods like meltable solids such as shortbread cookies, cheetoh puffs, crackers,frozen yogurt, yogurt and basically anything you can give a baby. My doctors have told me there’s nothing they can do for me, that I’ve got to learn to deal and a nutritionist won’t be helpful. Ugh. They’ve been zero help. All they did was put me on Omeprazole and say it won’t get better and just hope it doesn’t get worse. So I’m looking for food ideas from others with this issue. I think from googling on my own I’ve realized maybe I can do mechanical soft, but I’m scared as when this began my swallow reflex would stop when something solid would get stuck and I don’t want to go backwards since I have to work full time and maintain my energy. I’ve been suffering with this for two years and lost a violent amount Of weight at first, so much so that my gall bladder went bad and had it removed in June. Ugh. It’s so hard “living” like this and these food holidays don’t help. Ugh. I’m tired of feeding my body liquid sugar and junk food because it goes down easy. I wish I could just bake a chicken breast and some broccoli. I’ve tried pureeing my food but I wanna vomit with puréed meat. Ugh. Any assistance with ideas for more solid/soft food that goes down for those with esophageal motility disorders would be beyond appreciated. Thank you.

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I have esophageal dysmotility and silent reflux and a problem with the back of my tongue movement. A speech therapist gave me some exercises (which I can't remember) that did help at first.

The worst food in the early stages was bread. But now it's a really slow process to eat or drink anything. The other day I timed how long it took for me to start chewing a quarter inch square of a shortbread cookie, ending when I felt it move out of my esophagus into my stomach. It took 45 seconds to eat that miniscule bit of cookie.

As others have said, I have to chew everything into puree and swallow just a little at a time. It takes so long to get through a meal that I find I'm eating less because I'm tired from the chewing.

Liquid wasn't a problem until a month ago. Now I drink a sip, hold it in my mouth, tuck in my chin and then finally swallow. Those are the directions from the speech therapist. No straws because it propels the liquid to the back of the mouth too quickly. No carbonated drinks. I do drink a glass of pop when I'm in a restaurant.

Lately I've been sensing a feeling of fullness, not in my stomach but higher up, after eating only a small amount of food. I'm not sure what that is. I've had two swallowing tests, but it was more than a year ago. Maybe it's time for another.

I have small fiber idiopathic polyneuropathy and the beginning of autonomic neuropathy, so it's often hard to diagnose things because of the comorbidity. Neuropathy could be involved with several other issues I have - diplopia, dysphagia, reflux, tinnitus, urinary problems, loss of sensation in my cheeks, fingertips and so on, all the way down to my toes.

I also use a fair amount of liquid to help with the complete swallowing, but sometimes it just makes it worse.

My sister had serious swallowing problems and eventually had to have a feeding tube, and after seeing many, many specialists at Stanford and other good facilities, never was able to get a diagnosis, and gradually lost more weight and strength and died in her 50's. So, I tend to take things like this seriously because of how hard it was to watch her waste away. I admit to being a bit paranoid and OCD.

Before the swallowing problem started, I had been in therapy for several years for depression, anxiety, PTSD and suicidal ideation and attempts. So every time another issue arises, it affects my mental health. And of course it's cyclical.

Sorry to go on so long. I would welcome any ideas or suggestions.

Jim

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Mar 12, 2020
In reply to @kaforester3 "I have had some issues with my esophagus for the past 7 1/2 months. I had..." + (show)
Profile picture for kaforester3 @kaforester3

I have had some issues with my esophagus for the past 7 1/2 months. I had recently got diagnosed with Crohn’s and finally got some medicine for it. I had been dealing with GI issues for 3 years. They put me on Protonix, Pepcid twice a day; and Carafate in January of last year because they thought that would help with the GI issues and pain in my right side.

In August they went to do a EGD and they couldn’t because my esophagus was too narrow. I went for a swallow test and it showed a hernia and an Esophageal web. Well since then I have had 4 dilations and now it’s hard to swallow even liquids sometimes. I have also started having excessive saliva in my mouth.

Has anyone ever been through this? I have an appointment at the Mayo Clinic in April but I’m just afraid that it’s going to be like my other appointments and they find nothing wrong.

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@kaforester3 - Welcome to Mayo Clinic Connect!
You have had to deal with a lot of new health issues and diagnosis lately. I don’t know much about esophageal webs, but I understand the dilations. I am feeling positive about your Mayo visit- something will be done. Before this visit maybe you should talk to your local doctors about your swallowing difficulties. Please stay in touch.

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1 reply
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engelee | @engelee | Mar 12, 2020
In reply to @kaforester3 "I have had some issues with my esophagus for the past 7 1/2 months. I had..." + (show)
Profile picture for kaforester3 @kaforester3

I have had some issues with my esophagus for the past 7 1/2 months. I had recently got diagnosed with Crohn’s and finally got some medicine for it. I had been dealing with GI issues for 3 years. They put me on Protonix, Pepcid twice a day; and Carafate in January of last year because they thought that would help with the GI issues and pain in my right side.

In August they went to do a EGD and they couldn’t because my esophagus was too narrow. I went for a swallow test and it showed a hernia and an Esophageal web. Well since then I have had 4 dilations and now it’s hard to swallow even liquids sometimes. I have also started having excessive saliva in my mouth.

Has anyone ever been through this? I have an appointment at the Mayo Clinic in April but I’m just afraid that it’s going to be like my other appointments and they find nothing wrong.

Jump to this post

I certainly empathize with your fear,; however, once you get there and meet your MD you will have this feeling of “ finally, there is help”. The gastroenterology dept has all experts on staff—very little they have not managed.

REPLY
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kaforester3 | @kaforester3 | Mar 12, 2020
In reply to @tryingtofindanswers "Hi I’m a 39 year old woman and I’ve got ineffective esophageal motility disorder, with spasms...." + (show)
Profile picture for Cam @tryingtofindanswers

Hi I’m a 39 year old woman and I’ve got ineffective esophageal motility disorder, with spasms. My manometry showed 90% failed swallows. I can eat certain things like liquid drinks, smoothies, puréed soups and some solid foods like meltable solids such as shortbread cookies, cheetoh puffs, crackers,frozen yogurt, yogurt and basically anything you can give a baby. My doctors have told me there’s nothing they can do for me, that I’ve got to learn to deal and a nutritionist won’t be helpful. Ugh. They’ve been zero help. All they did was put me on Omeprazole and say it won’t get better and just hope it doesn’t get worse. So I’m looking for food ideas from others with this issue. I think from googling on my own I’ve realized maybe I can do mechanical soft, but I’m scared as when this began my swallow reflex would stop when something solid would get stuck and I don’t want to go backwards since I have to work full time and maintain my energy. I’ve been suffering with this for two years and lost a violent amount Of weight at first, so much so that my gall bladder went bad and had it removed in June. Ugh. It’s so hard “living” like this and these food holidays don’t help. Ugh. I’m tired of feeding my body liquid sugar and junk food because it goes down easy. I wish I could just bake a chicken breast and some broccoli. I’ve tried pureeing my food but I wanna vomit with puréed meat. Ugh. Any assistance with ideas for more solid/soft food that goes down for those with esophageal motility disorders would be beyond appreciated. Thank you.

Jump to this post

I have had some issues with my esophagus for the past 7 1/2 months. I had recently got diagnosed with Crohn’s and finally got some medicine for it. I had been dealing with GI issues for 3 years. They put me on Protonix, Pepcid twice a day; and Carafate in January of last year because they thought that would help with the GI issues and pain in my right side.

In August they went to do a EGD and they couldn’t because my esophagus was too narrow. I went for a swallow test and it showed a hernia and an Esophageal web. Well since then I have had 4 dilations and now it’s hard to swallow even liquids sometimes. I have also started having excessive saliva in my mouth.

Has anyone ever been through this? I have an appointment at the Mayo Clinic in April but I’m just afraid that it’s going to be like my other appointments and they find nothing wrong.

REPLY
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