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

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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, lol. I like that "trust but verify". Absolutely. Judy

REPLY
pattitoo | @pattitoo | Mar 20, 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

This was a "reply" to someone here about Restless Leg....now where was their post?

REPLY
pattitoo | @pattitoo | Mar 20, 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

May I add, the ER nurse did not like it when I told her I had just experienced an ESOPHAGEAL SPASM --saying there
was no such thing.

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Mar 20, 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

One problem where I live is that an appointment with a gastroenterologist can take 6 months to get. I liked the one I saw 5 years ago, but short of waiting to see him, I might be able to see a PA within 6 weeks. Until now, no one thought I needed to pursue the information from the esophagram several years ago, but my doctor is going to have me see a speech therapist. Because it can be a symptom of MS, and because my sister and several cousins have MS, and I have all but one or two symptoms of MS, he is reluctantly scheduling me to see the neurologist, another very long wait. My wife thinks that it's a remote possibility that I have MS, and that I shouldn't worry about it. That's not so easy to do, with anxiety disorder and depression. I'm still trying to figure out what, exactly, is going on. From reading online, and knowing what the doctor said about that esophagram, I think that the rings that move in a specific, consecutive order to move the food on to the stomach, are moving randomly in the lower part of the esophagus, causing the food to slow down and stop. Drinking used to help get the food down, but doesn't anymore. Someone mentioned holding your breath when you drink. I've found that to really help. I often aspirate and start a choking cough. Unpleasant. Maybe one of people who study me will know what's going on, and will be able to improve my swallowing.

If this is a little incoherent, blame it on the late hour.

Jim

REPLY
danybegood1 | @danybegood1 | Mar 20, 2017

@pattitoo, right here it is. I thought you were talking about me since i mentioned quinine. Posted by @pattitoo, 2 hours ago
Restless Leg, just maddening isn't it. Doctors do not give
Quinine here, I did do searching and found that Diazapam can work and it does
for me. A doctor approved and prescribed it, GP refused....I only
take it when I need it. The doctor that prescribed it for me has known me for
approximately 29 years.
I have never figured out what triggers an episode, I often go
weeks without an episode.

Did i do something wrong?
Danybegood1

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 20, 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

@squaredancer Thanks for sharing your experiences with this procedure, it is very helpful to hear about this first-hand rather than just reading about it online! We all learn this way. Teresa

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 20, 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

@jimhd Wishing you well, Jim. When is your next appointment or test scheduled? Teresa

REPLY
matrix | @squaredancer | Mar 20, 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

Teresa, I am happy to help anyone that is having trouble understanding what the are dealing with If I can.
I have been and am going through so much since the 1st journey with cancer in 1973 and all the continual side effects.

I was rereading my post on EGD/Dilatation procedure.
I see that I left off one word where it is " 2 to".
It should have read "2 hours".
I am recovering from a major surgery from last Thursday and didn't take the time to read it before posting it.

Also I should have included more about the EGD/Dilatation procedure.
It is a 2 step procedure which is being done simultaneously if this is right terminology.
First is the EGD procedure and then there's the Dilatation procedure.
An EGD test will be completed at the same time of the stomach dedendum and the esophagus checking for any abnormalities.
If anything is found they will take biopsies and pictures of the area.
Then they will continue to do the Dilatation of the restrictor area.
They are using the same guide wire to send these different instruments into the areas.
This is why it is called an EGD/Dilatation procedure.
I hope this makes sense to everyone, but if it doesn't please let me know and I will try again.
If biopsies are taking, this will add time to the procedure by 10 or 15 minutes. So instead of the initial 15 minutes I previously it may be 30 minutes.
Because of the extra time for the procedure, it also adds extra time that you are sedated, which will also add extra time in recovery.
So it could now be 2 1/2 to 3 hours for total time including prep and recovery.
But it is still a simple procedure.

Again I wasn't feeling well yesterday an had to end the post without including the above information.

REPLY
jeancary | @jeancary | Mar 20, 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

Anything to do with the speech muscles is aided by speech therapy. It can involve articulation, swallowing, etc. and can be enourmously helpful.

REPLY
wljs | @wljs | Mar 22, 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 had the worst time with restless legs and couldn't seem to relax. They were the worst when I was overtired. I began taking 400mg of magnesium 2 hours before bedtime and I can say two things within three weeks I had no restless legs and fell asleep easily and slept so well I felt like a new person in the morning ! It worked for me. I really hate medications so thought I'd try something that naturally would relax my twitchy muscles.

REPLY
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