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Esophagus issues
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.
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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.
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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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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
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1 ReactionThank you. I wasn't asking for a diagnosis. Just kinda looking for some understanding. I know anything that I would get here may not pertain to my case or tell me what's happening. I just was looking for it to be "dumbed down" sorry can't think of another way to say it lol. I asked the nurse but I'm not sure she should be a nurse sadly. Only time I've ever thought that. But she couldn't explain anything and didn't know about any of it. Not sure why but after speaking with her a few times I thought it was better off not talking to her because it made everything worse I won't be back until April which I see my dr again after all these tests to hopefully understand what's going on. I just can't understand what these are saying at all or what part isn't working by reading these. Sorry about the info I posted and asked about. I can delete it
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1 Reaction@brie87144 No apology needed. You are looking for some help and we all understand being in the place where you are right now. From what I understand you to say, you have some other tests before your appointment in April - is that correct? If that is the case, just take it one test at a time and then before you go for your appointment make a list of the questions you have for the doctor and see that you get all of your questions answered before you leave. It is so important that we be our own advocates for our health care. it is imperative that we understand our health issues (or ask questions until we do understand) . Don't forget that a second opinion is always OK. Teresa
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2 ReactionsI'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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1 Reaction@brie87144 thanks for providing a bit more information about your situation. It does sound complicated. I've had a lot of GI problems, as well as swallowing problems and I know that the tests aren't very pleasant. As it turned out for me, my swallowing problems were due to a paralyzed vocal cord and it wasn't related to motility issues as yours are. Do you know the names of the tests that are upcoming? If so, list them for us and maybe we can find some information to put your mind at ease. Teresa
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2 ReactionsI know what the video barium test is (well I assume it's the same thing as the X-ray version but video instead) and the endoscopy and biopsy. There's one called neuro speech assessment and I haven't looked for this one yet but it's called the esophageal manometry.
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1 Reaction@brie87144 Ok here is some info that might help with your questions. The first website is about the neuro speech assessment, https://www.ncbi.nlm.nih.gov/pubmed/23409616. I've had this type of assessment as a result of a Parkinson's diagnosis. Do you have other neurological symptoms? From my experience this involves meeting with a speech therapist and they will listen to you talk, measure your volume and other aspects of your speech.
Here is the esophageal manometry information, this is from Mayo's website:
http://www.mayoclinic.org/tests-procedures/esophageal-manometry/basics/definition/prc-20014211
Hopefully, this info will give you some idea of what to expect. Teresa
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1 ReactionYes actually a lot. I lose complete feeling in my arms and legs. Numbness and tingling. Balance. Cognitive issues. Weakness and migraines. They thought I had MS for a while but couldn't find it so we moved on from that. I honestly think everything I'm dealing with has to do with my nerves. But neurologists I guess don't have a name for it or can't make it fit into one thing. I kinda think it's my EDS but mayo doesn't think so. I'm surprised they haven't sent me for this before. What does it have to do with the esophagus issues? I found like 5 totally different things when I was looking it up so I'm glad you at least know what it was, haha. Thank you I'll look at both of those.
Again thank you!
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1 ReactionHi @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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2 Reactions@brie87144 When I first began with neurological symptoms it was thought to be MS as well, turned out to be Parkinson's. Keep reading and looking for answers, this seems difficult right now, but once you have a diagnosis and treatment plan it will seem manageable. Teresa
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