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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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Thank you. I'm currently seeing someone at a teaching hospital. They aren't doing much and I was considering mayo, but wasn't sure if my insurance would cover it. Does out of state insurance cover Mayo visits? Thanks!
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1 ReactionThank you so much. It's so hard to not want to give up as my doctors have told me there is nothing left to do. I am not even sure what to do or where to go next. I'm sorry you also have swallowing trouble but I'm glad it's not as severe as mine. I have also had GERD but I'm sure it was the medicine I took as that morning I ate a huge fast food breakfast and by dinner I was having issues swallowing. 🙁
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1 ReactionHi @tryingtofindanswers,
Very good question about out of state insurance at Mayo Clinic. I think you may find this resource helpful:
Patient Account Services at 800-660-4582.
For further information about billing and insurance, check out this resource: http://www.mayoclinic.org/patient-visitor-guide/minnesota/billing-insurance.
The best way to get the answers to your question is to contact that number and they will certainly be best equipped to help with your questions regarding insurance.
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1 Reaction@tryingtofindanswers
Eating smaller, more frequent meals will help greatly. I've had 3 surgeries of the upper digestive tract and also vocal cord surgery so I eat light meals (light in quantity and light in quality). It really does make a difference.
Keep us posted as to what you find out about going to Mayo and let us know how you are doing.
Teresa
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1 Reaction@tryingtofindanswers, hi. I made a pig of myself last night. I hadn't eaten sjnce breakfast and we had Taco Bell last night. I love their burrito supremes so i had two of them, and 8 cinnapuffs. Well? Today i feel like i ate two basketballs. Having shortness of breath, stomach hurtjng. Took. two of my bentyl and waiting for them to kick in.
It sucks to go to the dentist and then have your life change forever. Do you think he hit a nerve with his needle. That happened with me one time. Not with my mouth, but, i went to a party one time when i was a senior in high school. Someone put something in my drink that made me crazy. I was crying and thrashing all around. The nurse in the ER couldnt get a good shot at my arm so when she stuck me she hit the bone in my elbow. My right arm was in a sling for 3 weeks. And boy did it hurt..
Well, the Dr. gave you beta blockers and medicine for hbp right? Iam finding out that they both have some nasty side effects.. For about 2 years i have had this cough. I thought it was allergies which i have. But now that i think about it, it22609 91st Way S. J103 could be the metoprolol and lisonopril im taking, both heart meds. Ive developed a lot of mucous which im using flonase for.
Aint life grand, and all from a dental appt. Do you think your Dr would let u take an antihistamine for the mucous? At least you might not have to fight with that all the time. Can u sue your dentist? Sounds warranted to me.
Hang in there. We're right here. Dany
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1 ReactionHello Cam, @tryingtofindanswers,
I found this Mayo Clinic journal article about Esophageal Motility Disorders, and thought you may wish to view it: http://www.mayoclinicproceedings.org/article/S0025-6196(11)63127-3/fulltext
I would also encourage you to go through these discussions on Connect:
– Achalasia, https://connect.mayoclinic.org/discussion/achalasia-29e1d8/
– Esophagus issues: https://connect.mayoclinic.org/discussion/esophagus-issues/
Meanwhile, I'm tagging @barens2 @ryman @amoll157, @jimhd, @fjg827, @bilobabe, @margo42, @apportee, @rsinger22, @ladysky, @dandl48, @robbinr, @ed32, @brie87144 and hope they will join me in welcoming you, and adding their thoughts and experiences.
Cam, there are a few procedures like POET (Peroral endoscopic tumor resection), which seem to have successful outcomes in the treatment of esophageal motility disorders; would that be something you would consider?
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2 ReactionsThanks so much! I'm still so overwhelmed with all of this and trying to find answers and potential treatments. My doctor says there is nothing left to do. I was considering Mayo Clinic but have no idea where to start. Ugh. I appreciate your links and tagging others as well.
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1 ReactionIf your doc says there's nothing left to do, you should definitely continue to seek answers. There's always a higher authority on everything - whether a doc or grocery store complaint! If you're interested in the Mayo Clinic, simply start by using contact info from their website. Once you have someone on the line, you can ask to be directed to the division that handles your gastro/esophogus issues. Good luck! Is IS frustrating at times. I know mine has gotten much better by going back on Aciphex and watching the acid foods. I can usually get by with a bit of cheating for something special!
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2 ReactionsThanks. Still persuing treatment.
@danybegood1, @brie87144
It's been awhile, and a lot has happened since March. For my terrible pain from peripheral neuropathy, I did a trial spinal cord stimulator implant and was approved for the permanent implant, which was done in May. My feet still burn and hurt, but it's much, much better. I had cataract surgeries on both eyes, which has greatly improved my vision. I've had an endoscopy, a colonoscopy, an x-ray swallowing test, and a scope to watch the back of my tongue during swallowing. I am seeing a speech therapist, who's giving me exercises to strengthen my tongue so it performs its job effectively. The ENT doctor found that the back of my tongue isn't strong enough to create sufficient pressure in my esophagus to propel the bolus through, and also found that it has choreiform movement. That means that it doesn't assemble the bolus the way it should, so food stays in my mouth longer than normal. She suggested that it could be a symptom of Huntington's Disease (genetic testing has shown that to be unlikely). So, without adequate pressure in my esophagus, I have to swallow more than once to achieve the pressure. Of course, then the bolus comes to the area of esophageal dysmotility, and starts and stops until it eventually gets to the door to my stomach. Usually it opens, but occasionally it opens at the wrong time, and a little gastric content sneaks up into my esophagus, which is called silent reflux. Yesterday, eating lunch took 50 minutes. First, chew and chew and chew, then gather it together to form a bolus, then comes the slow process of moving the bolus through the esophagus into the stomach. What a pain!
Now, having said all that, I wonder if you've seen any progress in your swallowing issues. Brie, I've learned a lot of medical things over the years, and, like you, I push for explanations if I don't understand completely. I also know enough by now that I understand more of what they say, and most of my doctors have figured out that I don't want them to dumb down what they say. I just return their dumbed down comments with intelligent responses using technical terms. If a doctor doesn't work with me, I move on to a better one. I guess I'm old enough that I can move on if I want to. I've assembled a pretty good team of doctors who care for me. The neurologist has been a challenge because his nature is not very outgoing, and I have to draw things out of him. My wife isn't impressed, but I see the potential. He did do one thing that was in his favor, suggesting that I get another opinion, which led me to a good pain specialist.
I was skeptical about seeing a speech therapist, but I've been impressed with her, and she's explained a lot and moved me along to appropriate tests. She does way more than help kids with speech issues.
Anyway, things are moving forward, maybe at a slower pace than I'd like, but I have hope that I'll not develop worsening symptoms.
I'm glad that you don't have psych problems, Brie. They really can exacerbate physical problems.
Jim