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Esophageal dysmotility
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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I've been dealing with swallowing issues for over a year and a half now. They began after a course of beta blockers. After two manometry tests, 3 barium swallows and two endoscopies, i've been diagnosed with ineffective esophageal motility disorder and a sliding hiatal hernia. I also have pretty bad acid reflux. I have trouble eating anything that isn't liquid now. The only solids I can eat are saltine crackers, graham crackers and shortbread cookies, basically anything that's a meltable solid. As part of this issue, i get what feels like random electric shock sensations over my chest. They are quick and usually are a result of how I'm sitting or something I've eaten that's more solid. My heart has been ruled out, so these sensations are coming from the esophagus, i assume. Has anyone experienced this sensation as part of esophageal motility issues or hiatal hernia? Also, just doing another random check-in to see if anyone has ever been successfully treated for esophageal motility disorders. I sure do miss the luxury of solid food. Curious as to what doctors at mayo are good to see about esophageal motility disorders that are not achalasia. Thanks!
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2 ReactionsHello @tryingtofindanswers and welcome back to Connect.
It has been a while since you last posted. I am sorry that you are still dealing with the same problem of difficulty eating, swallowing, etc. and now even have a new symptom of the shock-sensation over your chest. You must be very frustrated.
As I recall from your previous posts you were going to look into visiting a Mayo facility. Were you able to get more information about that? Also, did you ever look into speech therapy for assistance with the swallowing problems?
I looked on Mayo's website and I saw this link, https://www.mayoclinic.org/biographies/vela-marcelo-f-m-d/bio-20111414. This doctor deals with motility issues. However, you would have to call to see if he would be able to assist with yours.
I appreciate your checking in with Connect again and I hope that you continue to post and keep us updated on how you are doing.
Teresa
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1 Reaction@tryingtofindanswers I have had swallowing issues for many years. I am able to eat soft cooked food.. you could mash it with a fork and it would be baby food. I can also eat tender meats. I cannot eat white potatoes nor most breads. I cannot swallow a saltine, but can swallow Ritz crackers.
I have had a sliding (paraesophogeal) hernia that caused many problems (I am hoping it does not become stubborn again). Here is a small part of my story (too long for here and there are no ads that I am aware of at my blog): http://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html .
I have achalasia and Barrett's esophagus now. After my last suregery in 2015 I was told I would have chest pains and not to worry.. it is not my heart. The thoracic surgeon said I would probably have the pain the rest of my life. The pain comes when I have eaten a little too much or with exercise or trying to do household chores.
My esophagus spasms in two places. First at the beginning of my esophagus and second as it enters my stomach. Sometimes it takes a while before food will enter my stomach and backs up onto my esophagus. Sometimes I do not realize it has done this until I try and drink something and it will not go down and the food will then start coming up. The esophagus is suppose to squeeze the food down and with me the food just drops at the start of the esphagus down to my stomach.
Dilation of my esophagus.. so far.. has helped me with swallowing, but after about 18 months it gets about impossible to swallow again. I think there are surgeries that will sometimes help, but I am not to that point yet.
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1 ReactionI can empathize with you. I have a been suffering from GI problems ever since March 2003 I had the Gastris Bypass surgery. I won’t make this long..so I’ll just post recent issues. I was diagnosed with Gastroparesis about 2-3 years ago and Vagus Nerve Dysfunction 2 years ago, which I’ve probably had longer then that. I almost died in 2015 because I couldn’t eat or drink without vomiting. I had 2 feeding tubes placed and lost 70 lbs. within 2 1/2 months. I couldn’t tolerate the feedings either. My general surgeon who has operated on me multiple times I have been with the past 10 years. He decided the only option for me was to reverse the gastric bypass. It was pure hell post surgery and not a day goes by without nausea, vomiting, abdominal pain and the Esophageal spasms. Those spasms make you double over in pain, it was if I was having a heart attack. I’ve been told there is no fix for the spasms. There is no fix for the Vagus Nerve Dysfunction either which that’s pure hell I have to live with the rest of my life. Symptom management is basically all I can get. I had a hell or myotomy in 2006 which is where they removed the lower region of my esophagus. I’ve had my esophagus dialated more times than I can remember, I’ve had those Botox injections near my pyloric sphincter which helped with my Gastroparesis for a few months. I’m sorry for going on a rant. If you need someone to talk to please reach out.
Michelle
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1 ReactionHi I’m a 39 year old woman and I’ve got ineffective esophageal motility disorder, with spasms. My manometry showed 90% failed swallows. I can eat certain things like liquid drinks, smoothies, puréed soups and some solid foods like meltable solids such as shortbread cookies, cheetoh puffs, crackers,frozen yogurt, yogurt and basically anything you can give a baby. My doctors have told me there’s nothing they can do for me, that I’ve got to learn to deal and a nutritionist won’t be helpful. Ugh. They’ve been zero help. All they did was put me on Omeprazole and say it won’t get better and just hope it doesn’t get worse. So I’m looking for food ideas from others with this issue. I think from googling on my own I’ve realized maybe I can do mechanical soft, but I’m scared as when this began my swallow reflex would stop when something solid would get stuck and I don’t want to go backwards since I have to work full time and maintain my energy. I’ve been suffering with this for two years and lost a violent amount Of weight at first, so much so that my gall bladder went bad and had it removed in June. Ugh. It’s so hard “living” like this and these food holidays don’t help. Ugh. I’m tired of feeding my body liquid sugar and junk food because it goes down easy. I wish I could just bake a chicken breast and some broccoli. I’ve tried pureeing my food but I wanna vomit with puréed meat. Ugh. Any assistance with ideas for more solid/soft food that goes down for those with esophageal motility disorders would be beyond appreciated. Thank you.
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3 ReactionsI feel your pain. I, too, have a swallowing disorder, though they don't know why. I have Laryngospasms and benign multinodule (5) goiter on my thyroid. Lost my gall bladder years ago. Have mesh implants from 5 lb. Messenteric abdominal cyst removal and ventral hernia that followed and have had a nissen fundoplication and a toupet fundoplication... which is to connect my esphogus and my stomach. Last surgeries at the end of 2016. Now deal with worse dysphagia, dumping syndrome and positonal pains. Now have intestines pushing up into chest area.
For the 3 years I have been on a semi solid diet. Mostly the things you mentioned... Nilla wafers dissolve in your mouth and are easy to swallow. Also just found liquid greens... veggies. Not too bad. But sometimes I choke on air... so food isn't always the enemy. I, too, struggle to find some more items to eat again, but slowly realizing I may be stuck with what I have found. Swallowing pizza is impossible. I have lost around 97 lbs. and am in need of more nourishment but protein drinks make me ill, too. It sucks. I hate my food life. I hurt all over. Being skinny is NOT fun. It hurts. I walk through the grocery store like a zombie... no, no, no... I cant swallow that or digest that. BUT... There is a new product I tried... though it tastes not great, yucky actually, but you might like it... it is good for you totally. It's called Huel. A powder. Nutritionally complete food. 500 calories per cup. Jazz it up and drink it or use powder in your pudding or soups. And the meats I do eat... I cut into teeny tiny portions and then chew the heck out of them. Puree... agreed... barf! I am rooting for you! Post if you find something good... I will try it too! I am 57 & female, by the way. My thoughts are with you. I didn't get much sympathy or help from my surgeons, either. Learned most on internet unfortunately.
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3 ReactionsIf you have problems with a narrowing of the esophagus you might find this discussion by Mayo Dr. Magnus Halland interesting.
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/esophageal-self-dilation-therapy-an-effective-alternative/
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1 ReactionHi Darlia- I know you posted this 2 years ago- but I'm just seeing it now. How are you doing with the IEM? I have had an endoscopy and esophageal motility test which shows that my lower esophageal sphincter is "tight as a drum" said the doctor. So, I am on 40 mg Prilosec in am and 240 mg Diltiazem- which is a calcium channel blocker and somewhat relaxes the LES. And, then I take 300 mg of Ranitadine at night. The meds are helping- but it has been 7 years like this now.- and still feels like there is something stuck in my throat. I also know the proton pump inhibitors do something to the Intrinsic Factor- which produces Vit B12. My sister has to give herself a Vit B12 shot every month. Does anyone have any thoughts or comments on this?
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1 Reaction@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.
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.