1. < Digestive Health

Esophagus issues

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 19, 2017
In reply to @kanaazpereira "Hi @brie87144, I see that Teresa, @hopeful33250 has given you some great information; thanks so much..." + (show)
@kanaazpereira

Hi @brie87144,

I see that Teresa, @hopeful33250 has given you some great information; thanks so much Teresa. I wanted to welcome you to Connect as well, and introduce you to a few members who have discussed some similar symptoms.
@amoll157, @dhuffman, @ladawki143, @lee28, @sfrigon, @klsxoxo, @tammyjean, @tgirl, @fjg827, @jimhd, @ryman, @margo42, @dash99999, will you join me in welcoming Brie, and adding your thoughts and experiences?

You may also wish to view this discussion on Connect: Achalasia, http://mayocl.in/2n7zND4, where you can read about a recent update from Mayo Clinic on Peroral endoscopic tumor resection, or POET, which has been been shown to achieve very successful outcomes in the treatment of esophageal dysmotility. Here's a direct link, too: http://mayocl.in/2mxsMJ7

It must be quite worrisome to undergo all these tests, but according to what I found from a bit of research, the video barium test and endoscopy will look at the 'body' and muscle of the esophagus, whereas the neuro-speech assessment and the manometry will determine how well you can swallow water, and whether that affects your speech.
I would encourage you to view the link that @hopeful33250 has given, which describes the test in detail.

@brie87144, do you have any suggestions or insight for Connect members who share some of these symptoms? Did you have to make major dietary changes?

Jump to this post

@brie87144 Yes, I've heard this discussed by people who have swallowing problems, it sounds odd but it really does help. Teresa

REPLY
Ryman | @ryman | Mar 19, 2017
In reply to @kanaazpereira "Hi @brie87144, I see that Teresa, @hopeful33250 has given you some great information; thanks so much..." + (show)
@kanaazpereira

Hi @brie87144,

I see that Teresa, @hopeful33250 has given you some great information; thanks so much Teresa. I wanted to welcome you to Connect as well, and introduce you to a few members who have discussed some similar symptoms.
@amoll157, @dhuffman, @ladawki143, @lee28, @sfrigon, @klsxoxo, @tammyjean, @tgirl, @fjg827, @jimhd, @ryman, @margo42, @dash99999, will you join me in welcoming Brie, and adding your thoughts and experiences?

You may also wish to view this discussion on Connect: Achalasia, http://mayocl.in/2n7zND4, where you can read about a recent update from Mayo Clinic on Peroral endoscopic tumor resection, or POET, which has been been shown to achieve very successful outcomes in the treatment of esophageal dysmotility. Here's a direct link, too: http://mayocl.in/2mxsMJ7

It must be quite worrisome to undergo all these tests, but according to what I found from a bit of research, the video barium test and endoscopy will look at the 'body' and muscle of the esophagus, whereas the neuro-speech assessment and the manometry will determine how well you can swallow water, and whether that affects your speech.
I would encourage you to view the link that @hopeful33250 has given, which describes the test in detail.

@brie87144, do you have any suggestions or insight for Connect members who share some of these symptoms? Did you have to make major dietary changes?

Jump to this post

The feeding tube would be directly into my stomach and used for maintenance. I would be encouraged to use my esaphagus as much as I could. But , no , none of it sounds fun. I will be interested to see your updates. Hope they can find something helpful.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 19, 2017
In reply to @kanaazpereira "Hi @brie87144, I see that Teresa, @hopeful33250 has given you some great information; thanks so much..." + (show)
@kanaazpereira

Hi @brie87144,

I see that Teresa, @hopeful33250 has given you some great information; thanks so much Teresa. I wanted to welcome you to Connect as well, and introduce you to a few members who have discussed some similar symptoms.
@amoll157, @dhuffman, @ladawki143, @lee28, @sfrigon, @klsxoxo, @tammyjean, @tgirl, @fjg827, @jimhd, @ryman, @margo42, @dash99999, will you join me in welcoming Brie, and adding your thoughts and experiences?

You may also wish to view this discussion on Connect: Achalasia, http://mayocl.in/2n7zND4, where you can read about a recent update from Mayo Clinic on Peroral endoscopic tumor resection, or POET, which has been been shown to achieve very successful outcomes in the treatment of esophageal dysmotility. Here's a direct link, too: http://mayocl.in/2mxsMJ7

It must be quite worrisome to undergo all these tests, but according to what I found from a bit of research, the video barium test and endoscopy will look at the 'body' and muscle of the esophagus, whereas the neuro-speech assessment and the manometry will determine how well you can swallow water, and whether that affects your speech.
I would encourage you to view the link that @hopeful33250 has given, which describes the test in detail.

@brie87144, do you have any suggestions or insight for Connect members who share some of these symptoms? Did you have to make major dietary changes?

Jump to this post

Welcome to Connect, @pattitoo,

We're so glad that you signed up. Connect member, @jillcresap posted about esophageal dilation, in an older discussion, and I sincerely hope she returns with some information.

@pattitoo, how often have you had this procedure done?

REPLY
matrix | @squaredancer | Mar 19, 2017
In reply to @kanaazpereira "Hi @brie87144, I see that Teresa, @hopeful33250 has given you some great information; thanks so much..." + (show)
@kanaazpereira

Hi @brie87144,

I see that Teresa, @hopeful33250 has given you some great information; thanks so much Teresa. I wanted to welcome you to Connect as well, and introduce you to a few members who have discussed some similar symptoms.
@amoll157, @dhuffman, @ladawki143, @lee28, @sfrigon, @klsxoxo, @tammyjean, @tgirl, @fjg827, @jimhd, @ryman, @margo42, @dash99999, will you join me in welcoming Brie, and adding your thoughts and experiences?

You may also wish to view this discussion on Connect: Achalasia, http://mayocl.in/2n7zND4, where you can read about a recent update from Mayo Clinic on Peroral endoscopic tumor resection, or POET, which has been been shown to achieve very successful outcomes in the treatment of esophageal dysmotility. Here's a direct link, too: http://mayocl.in/2mxsMJ7

It must be quite worrisome to undergo all these tests, but according to what I found from a bit of research, the video barium test and endoscopy will look at the 'body' and muscle of the esophagus, whereas the neuro-speech assessment and the manometry will determine how well you can swallow water, and whether that affects your speech.
I would encourage you to view the link that @hopeful33250 has given, which describes the test in detail.

@brie87144, do you have any suggestions or insight for Connect members who share some of these symptoms? Did you have to make major dietary changes?

Jump to this post

The EGD/Dilatation procedure can be done as often as every 3 to 6 months, which depends on the person situation for having it done and as long as the person feels that there are benefits being gain. This is how my GI Dr. has allowed me to have it done. This may not be the case with other doctors. It's a simple procedure which takes approximately 15 minutes to complete , but takes a total of about 2 to finish which includes prep time and the recovery time.
It started out slow for me at the beginning, then one year I had 5, but with my new circumstances since 2014 I'm down to just 2 per year.
That is basically just to keep my esophagus from closing up.
I have a list of each one that been completed.
And the importance of the location of the restrictor is the same at any level in the esophagus. It is still remains a blockage whether it be at the top, mid range or lower toward the stomach area.
What is going to make a difference is narrow caused by the restrictor and how lengthof the restrictor..

REPLY
danybegood1 | @danybegood1 | Mar 19, 2017

@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

REPLY
11 replies
Ryman | @ryman | Mar 19, 2017
In reply to @danybegood1 "@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where..." + (show)
@danybegood1

@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

Jump to this post

I recently just changed doctors because of some bad mistakes. My new doctor probably thinks I am a nuisance because I keep asking questions and pointing things out. But I have a lot of issues and some are still not resolved to the point of treatment. It is test and wait, wait for an apt, more tests,etc. Now I request a copy of my blood work.

REPLY
danybegood1 | @danybegood1 | Mar 19, 2017
In reply to @danybegood1 "@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where..." + (show)
@danybegood1

@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

Jump to this post

@ryman, im glad i can get my test results from their website. Its called My Chart. Do you not have something like that? Ive come to the point in my life where i dont trust anyone, doctors, men in general, and especially the government. Haha.

Judy

REPLY
pattitoo | @pattitoo | Mar 19, 2017
In reply to @kanaazpereira "Hi @brie87144, I see that Teresa, @hopeful33250 has given you some great information; thanks so much..." + (show)
@kanaazpereira

Hi @brie87144,

I see that Teresa, @hopeful33250 has given you some great information; thanks so much Teresa. I wanted to welcome you to Connect as well, and introduce you to a few members who have discussed some similar symptoms.
@amoll157, @dhuffman, @ladawki143, @lee28, @sfrigon, @klsxoxo, @tammyjean, @tgirl, @fjg827, @jimhd, @ryman, @margo42, @dash99999, will you join me in welcoming Brie, and adding your thoughts and experiences?

You may also wish to view this discussion on Connect: Achalasia, http://mayocl.in/2n7zND4, where you can read about a recent update from Mayo Clinic on Peroral endoscopic tumor resection, or POET, which has been been shown to achieve very successful outcomes in the treatment of esophageal dysmotility. Here's a direct link, too: http://mayocl.in/2mxsMJ7

It must be quite worrisome to undergo all these tests, but according to what I found from a bit of research, the video barium test and endoscopy will look at the 'body' and muscle of the esophagus, whereas the neuro-speech assessment and the manometry will determine how well you can swallow water, and whether that affects your speech.
I would encourage you to view the link that @hopeful33250 has given, which describes the test in detail.

@brie87144, do you have any suggestions or insight for Connect members who share some of these symptoms? Did you have to make major dietary changes?

Jump to this post

Four (4) times, I try now to be VERY careful when eating, some foods are more problematic for me, rice especially.
Can you believe one doctor said to drink water when food is stuck....NO! NO! NO! that is not to be done.
I do not know the actually pinpointed area. I do not want to be over-stretched so I am just being
careful for now. I will be getting a new Gastro soon and I had such trust in my previous doctor.
One morning toast with jelly caused an episode, I was able to get it up, my husband was concerned
and took me go to the ER though I knew nothing was stuck.
Thank you for your interest.

REPLY
pattitoo | @pattitoo | Mar 19, 2017
In reply to @danybegood1 "@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where..." + (show)
@danybegood1

@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

Jump to this post

<br><br><br><br><br>Restless Leg, just maddening isn't it. Doctors do not give <br>Quinine here, I did do searching and found that Diazapam can work and it does <br>for me.  A doctor approved and prescribed it, GP refused....I only <br>take it when I need it. The doctor that prescribed it for me has known me for <br>approximately 29 years. <br>I have never figured out what triggers an episode, I often go <br>weeks without an episode.<br> <br><br>

REPLY
Ryman | @ryman | Mar 19, 2017
In reply to @danybegood1 "@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where..." + (show)
@danybegood1

@brie87144, Keep looking Brie. You're being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

Jump to this post

Yes, I can get my results from the patient portal, but if I need blood work done elsewhere I ask for it. No, I do not trust either. Pres Reagan said "Trust but verify." I try to verify but I sure don't trust.

REPLY
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