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.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 18, 2017

Welcome to Connect, @marksnow. Thank you for joining this discussion and for sharing information. May I ask, when are you scheduled to have the surgery?

REPLY
2 replies
marksnow | @marksnow | Mar 18, 2017
In reply to @kanaazpereira "Welcome to Connect, @marksnow. Thank you for joining this discussion and for sharing information. May I..." + (show)
@kanaazpereira

Welcome to Connect, @marksnow. Thank you for joining this discussion and for sharing information. May I ask, when are you scheduled to have the surgery?

Jump to this post

March 28th, Dr. Bowers

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

Hello jimhd.

A GOOD Speech pathologist person is in perfect order for treatment of dyphagia problems depending on the type of Dysphagia you have.
But first what type of dysphagia problem do you have? Is it oropharyngeal dysphagia or is it another type? and what is the severity level you are having?

Speech pathologist (therappist) can do a number of test to determine to level of swallowing condition you are having and then decide what physical therapy that can be used to possibly improve your condition.
Test such as MBS Video esophagram or FEES test are 2 examples.
From there they could use what is called NMES treatments, as one example of treatments.
In this case they would use the VitalStim therapy, which is an electrical stimulation to the throat muscles.

How do I know this above information?
Well, I am on my 3rd journey with cancer since 1973. Two of the journeys have been dealing with the salivatory cancer, right side in 1973 and the left side in 2012.
I have now had both parotid glands removed due to cancer, 1973 and 2012 and have had radiation therapy after each.
But my problem with dysphagia started back in the 70's and was gradually getting worse over the years.
back then there was little knowledge about getting help for the condition.
It wasn't until 2006 until the problem was confirmed. And it was 2008 before I found out about any kind of treatments available.
By then it was to late to really help my condition but I was willing to try it.
It was done in group sessions of about 4 to 5 people at one time.
This pathologist had 6 instruments available and that was the reason the groups.
Each of us had a different condition that caused the swallowing problems, from radiation therapy to strokes. and some extremely severe and others less severe.
Then in 2012 I went through radiation therapy again but on the left side.
2 years after that I could no longer swallow anything, not even water.
Two speech pathologists completed the MBS video test and determine it was so bad that when I tried to swallow it was just flowing right into my lungs and stopped the test immediately.
I also cannot speak anymore as the tongue muscles do not move anymore along with the throat muscles not working.
So one speech pathologist gave me a series of exercises to do so that it could help make me say short words .
I can do that a little but sentences at all.
I know use a Boogie Board to do all my communications, plus email and text messages.

So I hope I have enlightened you on the connection of a GOOD speech pathologist and dysohagia.

Sorry this is so long but there's so much I had to say.
So it may sound stupid or like someone doesn't know what they are talking about when the patient is recommended to a Speech Pathologist but that is the wrong attitude.

I hope this helps you and you can email me back.

By the way Mayo Clinic flat out refused to see me when my Radiation Oncologist was trying to help me find out why I lost the capability to speak and swallow due to the tongue and throat muscles not working.

--
GOD BLESS,

Tim

REPLY
danybegood1 | @danybegood1 | Mar 19, 2017

I wish they had a Mayo Clinic here in Washington state. Ive been having problems swallowing since the early 2000's. Ive had tests but so far i only know what i dont have, which is a blessing too. Best of luck to you, Judy

REPLY
1 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

Hi @squaredancer,

Welcome to Connect. You will notice that I removed your personal email from this public discussion; posts to the discussion board are public, and we don't want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a more secure, private option.

Thank you so much for all the information and insight you've offered. The medical world is continuously advancing, changing, and often, unbeknownst to us, different branches/sub-specialties become indirectly linked to each other; it becomes confusing to understand why we may need to consult an expert from another discipline!
And it's always a good idea to be an advocate for your own health; ask questions, share experience, start conversations...just as we do here, on Connect.

@squaredancer, you have been on a tough journey; do you have any questions for Connect members?

REPLY
pattitoo | @pattitoo | Mar 19, 2017
In reply to @hopeful33250 "Hello @brie87144 Thank you for your recent post about your swallowing issues. I can understand your..." + (show)
@hopeful33250

Hello @brie87144 Thank you for your recent post about your swallowing issues. I can understand your frustration in having difficulties and being given a lot of information that is not easy to understand. That is most frustrating! We have a number of members of Mayo Connect who have discussed swallowing problems, so as you read through some of their posts you might be helped a little. As Mayo Connect is an online patient support community, we are not able to make diagnoses nor to interpret test results. That must be left to your doctor. From what you have said in your post, your doctor is not able to tell you more until he/she does some more testing, which means more waiting (that must be why they call us patients - we need a lot of patience!). However, I urge you to hang in there and read some of the posts here about swallowing problems and see if your doctor or his nurse may be able to help you sort out some of the information that they have obtained so far. Here is some information from Mayo's website about dysphagia, that might be helpult to you in the meantime http://www.mayoclinic.org/diseases-conditions/dysphagia/basics/definition/con-2003344. Keep in touch and let us know of your progress. Teresa

Jump to this post

Brie, your post was of value to me, thank you for sharing.

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

Thank you Tim, I am new on the Mayo board and recently signed up for some subjects' news letters.
We can learn from others sharing. I have noticed a slight change in my voice and and for "swallowing"issues my Gastro will stretch my esophagus, I don't want any more stretching. My Gastro physician has retired, now to find a replacement, he was caring and knew my insides well.

REPLY
Brie | @brie87144 | Mar 19, 2017
In reply to @hopeful33250 "Hello @brie87144 Thank you for your recent post about your swallowing issues. I can understand your..." + (show)
@hopeful33250

Hello @brie87144 Thank you for your recent post about your swallowing issues. I can understand your frustration in having difficulties and being given a lot of information that is not easy to understand. That is most frustrating! We have a number of members of Mayo Connect who have discussed swallowing problems, so as you read through some of their posts you might be helped a little. As Mayo Connect is an online patient support community, we are not able to make diagnoses nor to interpret test results. That must be left to your doctor. From what you have said in your post, your doctor is not able to tell you more until he/she does some more testing, which means more waiting (that must be why they call us patients - we need a lot of patience!). However, I urge you to hang in there and read some of the posts here about swallowing problems and see if your doctor or his nurse may be able to help you sort out some of the information that they have obtained so far. Here is some information from Mayo's website about dysphagia, that might be helpult to you in the meantime http://www.mayoclinic.org/diseases-conditions/dysphagia/basics/definition/con-2003344. Keep in touch and let us know of your progress. Teresa

Jump to this post

Thank you @pattitoo. I'm glad it had value for you. It's super frustrating to deal with and hope you aren't dealing with to much

REPLY
Brie | @brie87144 | 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

@ryman thank you for you're kind words. I have issues at the top as well there's times I can't get anything down into my throat at all. That's frustrating on top of everything else. Thicker liquids or substances are definitely more of an issue for me than anything else. Really a feeding tube?! That doesn't sound like fun at all. Well none of the fixes sound like fun. I'll be sure to update after my next round of tests to see what happens. Again thank you for your kind words. I hope they will find a better alternative for you.

REPLY
Brie | @brie87144 | Mar 19, 2017
In reply to @marksnow "I have been diagnosed with Barrettes disease and GERD. My Mayo team will be performing Fundoplication..." + (show)
@marksnow

I have been diagnosed with Barrettes disease and GERD. My Mayo team will be performing Fundoplication Surgery for Gastroesophageal Reflux soon and I am sure that it will solve my similar problems as you have explained. Just food for thought. Good luck.

Jump to this post

@marksnow What's that? I was reading that a hiatus hernia makes GERD worse? I wonder if they will fix mine

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