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

@ryman I have some of these issues, and I have been told I have excessive eosinophilic issue which messes up my entire esophagenic system. I also have Barrett’s Esophagus and Stomach cancer.

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@oldkarl

@ryman I have some of these issues, and I have been told I have excessive eosinophilic issue which messes up my entire esophagenic system. I also have Barrett’s Esophagus and Stomach cancer.

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Thank you for your reply. I have been concerned about Barrett’s esophagus but this extreme has only been for a few days. I have had swallowing problems and esophageal cramps for sometime. I am afraid it may be awhile before I can see the doctor. I wish you well with your problems.

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Hi @ryman,

You might also wish to view this discussion, “Non Specific Esophageal Motility Disorder Caused by Beta Blockers” https://connect.mayoclinic.org/discussion/non-specific-esophageal-motility-disorder-caused-by-beta-blockers/ where @tryingtofindanswers has shared some great information.

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I have had a hiatal hernia repair and a 360 degree nissen fundoplication to get rid of acid reflux. Post op testing on me was (1). 48 bravo PH test- which indicated that my ph was neutral; (2). esophagram- which indicated that perhaps the wrap is too tight; (3). esophagael manometry- which indicated that my motility was at 30%. Prior to the fundo and hiatal hernia repair i was at 70%- again no reason by the surgeon given for the drop in motility. At 7 months after the fundo operation i had to have my gallbladder removed- it was full of stones. I am still getting “heartburn ” sensation. My surgeon has diagnosed this as a “hypersensitive esophagus”- this means that my esophagus pain can be set off by anxiety, stress, etc. The AMA solution for this non-surgically is (1) hypnosis- trick the brain into telling it that my pain is not acid reflux pain- 12 sessions and $1100 out of pocket this has failed; (2) be on antidepressants to relax the esophagus muscles. i am on atavan – 1mg- 4 times a day. I have to take one after i eat a meal to soothe the “heartburn” sensation. it does help a little. Has anyone out there been disgnosed with a “hypersensitive esophagus”? Also has anyone out there who has had a nissen fundoplication have continuing stomach bloating as well as lots of flatulance as i do? My operation was done in pittsburgh,pa on 11/1/2016. I am considering having this undone and just fight off the real heartburn with 60 mg of prevacid as well as 4000 mg of sulcrafate. This worked 1 month before the operation where i had no heartburn. I might also mention that after the gallbladder removal my “heartburn” sensation worsened. When the 48 hr bravo test was done the biopsies performed on the esophagus and stomach indicated some small amount of bile in my stomach. The stomach surgeon thought that the bile may be irritating my stomach and thus irritating the esophagus. he prescribed generic questran, which is an orange flavored resin powder to be dissolved in water before each meal (2grams/meal). After 1.5 weeks of this powder i felt more sick. I checked with the gallbladder surgeon and he said it is not unusual to have some residual bile in the stomach after gallbladder surgeon and many people live with bile in their stomach with no known “heartburn” syndrome. My gastroenterologist says the same thing. The stomach surgeon said to quit taking the questran if it is bothering me. I did quit it. I also noticed after gallbladder removal , i seemed to put on about 7 lbs which has stabilized. Has anyone experienced this after gallbladder removal and Nissen fundoplication? any advice would be greatly appreciated on any of the questions above I would be very interested in anyone who has been diagnosed with “hypersensitive esophagus…thank you…..kozlo52

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Hi @kozlo52,

I’m tagging Mentor @kdubois, as she may be able to help answer some of your questions.

You may also be interested in reading this discussion, https://connect.mayoclinic.org/discussion/does-anyone-here-have-or-heard-of-nutcracker-esophagus/ where @blackoutthesun @maureercria have written about Nutcracker esophagus, which is similar to esophageal hypersensitivity.

Liked by blackoutthesun

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Anyone who has had EGD WITH BOTOX INJECTIONS? Results ?

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Hi @rinstaffordaz,

You may notice that I moved your discussion and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to the many members who have discussed their experiences related to EGD (esophagogastroduodenoscopy).
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their loved ones' experiences.

I'd like to tag @cab26, who recently shared results of an EGD, and could perhaps offer some more information.

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@muggsy

Hi, new to this site… I've been diagnosed with esophayeal hypersensitivity…neuropathy in esophagus. Which means anything I eat burns my tongue and stomach as if I ate hot sauce or at times minty as in peppermint… we've not been able to find a treatment for this. Suggestions would be helpful… thank you.

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@muggsy I do not remember seeing this diagnosis before. I looked it up and read this article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950665/ It may not help you, but may help others understand why they are prescribed an antidepressant. Many believe their doctor thinks their condition is “all in their head” when prescribed one. They do have other uses other than depression.

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Hi, new to this site… I've been diagnosed with esophayeal hypersensitivity…neuropathy in esophagus. Which means anything I eat burns my tongue and stomach as if I ate hot sauce or at times minty as in peppermint… we've not been able to find a treatment for this. Suggestions would be helpful… thank you.

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@fourof5zs

@muggsy I do not remember seeing this diagnosis before. I looked it up and read this article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950665/ It may not help you, but may help others understand why they are prescribed an antidepressant. Many believe their doctor thinks their condition is “all in their head” when prescribed one. They do have other uses other than depression.

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Hi, Thank you so much for the information… I have heard of the antidepressant regiment… I did try very small dose of one awhile back and it worsened another issue I have… so I don't know what to do…as this has gotten significantly worse!

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