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.

@brie87144

I’ve been going to mayo every month since December 2015 trying to find out what my body is freaking out about. This was just a side issue caused by whatever is going on that mayo hasn’t figured out. I’m usually pretty on top of everything and have no problem finding meaning but GI has me confused lol. I have 4 more tests in April. I have no idea what one of them is or how it’s even done cause I can’t find anything. All I know it’s going to be a long week with lots of tubes down my throat.

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Sadly looking for over 3 year In total. I know I’ll find something one day. Eventually lol

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@brie87144

I’ve been going to mayo every month since December 2015 trying to find out what my body is freaking out about. This was just a side issue caused by whatever is going on that mayo hasn’t figured out. I’m usually pretty on top of everything and have no problem finding meaning but GI has me confused lol. I have 4 more tests in April. I have no idea what one of them is or how it’s even done cause I can’t find anything. All I know it’s going to be a long week with lots of tubes down my throat.

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@brie87144 I looked for many more years than that, neurological disorders are not easily diagnosed. Keep up your courage! Teresa

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@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?

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Thank you for replying! Weirdly I haven’t been to worried. I just like to be well knowledgesd in areas even if it doesn’t pertain to me. The only thing that worried me is seeing the neurosurgeon to find out if I have chiari malformation. But that’s a whole different ball game. And anything that can distract me away from that is good research haha. I am definitely going to look at those as soon as I get to my computer. Everything is so small on my phone.

Ummm as far as suggestions not really, I eat little as possible besides thin protein shakes cause I can’t get much else down.

Thank you again for the reply

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@brie87144

I’ve been going to mayo every month since December 2015 trying to find out what my body is freaking out about. This was just a side issue caused by whatever is going on that mayo hasn’t figured out. I’m usually pretty on top of everything and have no problem finding meaning but GI has me confused lol. I have 4 more tests in April. I have no idea what one of them is or how it’s even done cause I can’t find anything. All I know it’s going to be a long week with lots of tubes down my throat.

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They are frustrating for sure.

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@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, Brie, welcome to the community. I am not sure I have anything to offer except to wish you the best of luck with your tests. I have had a swallowing problem since high school. Only recently has anyone even tried to find the problem and do anything. I have had some tests and had my esophagus stretched. My problem is at the top of my throat. Once anything actually starts down it is usually fine. Liquids are harder for me and they told me to thicken them. I have asked to be sent to a speech therapist several times but my doctors don’t want to do that. They talk about a feeding tube. Sometimes I just wish people could understand that I do have a problem. I will be anxious to know how it all works out for you. It is a terrible condition to have and I hope it all works out for you.

REPLY
@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

My pcp is setting up an appointment with the speech therapist. It’s hard to see a connection between speech therapy and dysphagia.

Jim

REPLY
@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 I applaud you for wanting to be well-knowledged! It is SO IMPORTANT to go into appointments with questions based on your reports and research that you have done. Most doctors appreciate a patient who is well prepared for their appointments. As far as suggestions, have you tried holding your breath when you drink? In our discussions on Connect, many of us have discussed that and it seems to make a difference. Keep in touch and let me know how you are doing. Best wishes for a good day! Teresa

REPLY
@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 Hi Jim: The speech therapist is a good idea. They have a way of evaluating your speech which helps diagnose other problems. It is a great idea! The speech exercises that you can do might help strengthen the area involved with swallowing as well as speech. My speech therapist is one of my favorite medical professionals! She has been very helpful not only with a stronger voice, but has also helped with overall strength in the muscles that affect swallowing. Teresa

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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.

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@marksnow Thanks for that information! Teresa

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