1. < Digestive Health

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.

Mentor
Jim, Volunteer Mentor | @jimhd | Oct 15, 2017
In reply to @hopeful33250 "Hello Jim, @jimhd I agree with you that curiosity and research can be confused with worry..." + (show)
@hopeful33250

Hello Jim, @jimhd

I agree with you that curiosity and research can be confused with worry - it is sometimes hard to decide the motivation.

I'm glad to hear that you are getting some answers to some of your problems. The swallowing problem can be difficult to sort out. My swallowing problem has been caused by Parkinson's and also a paralyzed vocal cord, which was corrected some with surgery. I have been told that turning my head and looking down will help when I swallow. Also, holding your breath when you swallow liquids has been known to help with some swallowing problems. I'm not sure that these techniques work for all swallowing problems - but you can certainly give them a try.

As I recall you also saw a speech therapist. Was that helpful?

Teresa

Jump to this post

Yes, Teresa @hopeful33250 - it does help to hold my breath when drinking liquid. I'm working on taking sips instead of guzzling. I've found that swallowing is a bit better since starting the exercises, though certain foods do require extra effort to get them all the way to my stomach. Tim @squaredancer has been helpful with knowing what to watch for, especially as far as risky eating is concerned. Weird. I never thought of eating as a risky behavior. Lol.

I'm finding that many of my problems are likely associated with neuropathy. I think that, for the most part, progression is relatively slow, which eases my anxiety level somewhat.

How long have you had Parkinson's, Teresa? That's another disease that might progress slowly, as well, though I've known people at both ends of the spectrum. You appear to take things in stride. I imagine, though, that you carry some level of anxiety. I know the challenges that anxiety, as well as the various diseases themselves, presents. I pray that the Lord will give you the strength you need for each day.

Jim

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 15, 2017
In reply to @jimhd "@squaredancer I was reading through this discussion, and saw that I never responded to your post..." + (show)
@jimhd

@squaredancer

I was reading through this discussion, and saw that I never responded to your post back in March. How are you doing by now? Have you seen any change in your speech?

You asked about my swallowing. The speech therapist has given me a few tongue exercises, and I think they have helped. Maybe my tongue is stronger and is generating more pressure in my esophagus, so food is going through more easily. I stopped using a straw because it propels the liquid to the back of my mouth too fast, and it goes down and either starts to aspirate or hits the vocal folds. Either way, I cough and gag. I have esophageal dysmotility in the lower half, and it takes a while for the bolus to get to the bottom, especially soft breads and meat. I chew a lot, swallow twice, and wait. I often take a small drink to lubricate it so it slides on down.

Peripheral neuropathy pain is much better since I had the spinal cord stimulator implant in June. Last week the neurologist did a nerve conduction study of my hands and confirmed neuropathy there. The urologist and the ENT doctor (ear and tongue) suspect neuropathy involvement in those areas, as well.

The list seems to grow for many of us as we age.

I hope you're doing ok.

Jim

Jump to this post

@gailb

I'm glad to hear that your attitude and ART therapy was so helpful!

Teresa

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Oct 16, 2017
In reply to @jimhd "@squaredancer I was reading through this discussion, and saw that I never responded to your post..." + (show)
@jimhd

@squaredancer

I was reading through this discussion, and saw that I never responded to your post back in March. How are you doing by now? Have you seen any change in your speech?

You asked about my swallowing. The speech therapist has given me a few tongue exercises, and I think they have helped. Maybe my tongue is stronger and is generating more pressure in my esophagus, so food is going through more easily. I stopped using a straw because it propels the liquid to the back of my mouth too fast, and it goes down and either starts to aspirate or hits the vocal folds. Either way, I cough and gag. I have esophageal dysmotility in the lower half, and it takes a while for the bolus to get to the bottom, especially soft breads and meat. I chew a lot, swallow twice, and wait. I often take a small drink to lubricate it so it slides on down.

Peripheral neuropathy pain is much better since I had the spinal cord stimulator implant in June. Last week the neurologist did a nerve conduction study of my hands and confirmed neuropathy there. The urologist and the ENT doctor (ear and tongue) suspect neuropathy involvement in those areas, as well.

The list seems to grow for many of us as we age.

I hope you're doing ok.

Jim

Jump to this post

Hi, Gail @gailb - I've been working with a speech therapist for a couple of months, and I think the exercises she's given me have helped. I don't have dentures, still original equipment. When I was 50, I had braces at the same time as our young daughter, and I wear a retainer every Saturday night.

Jim

REPLY
GailBL, Alumni Mentor | @gailb | Oct 16, 2017
In reply to @jimhd "@squaredancer I was reading through this discussion, and saw that I never responded to your post..." + (show)
@jimhd

@squaredancer

I was reading through this discussion, and saw that I never responded to your post back in March. How are you doing by now? Have you seen any change in your speech?

You asked about my swallowing. The speech therapist has given me a few tongue exercises, and I think they have helped. Maybe my tongue is stronger and is generating more pressure in my esophagus, so food is going through more easily. I stopped using a straw because it propels the liquid to the back of my mouth too fast, and it goes down and either starts to aspirate or hits the vocal folds. Either way, I cough and gag. I have esophageal dysmotility in the lower half, and it takes a while for the bolus to get to the bottom, especially soft breads and meat. I chew a lot, swallow twice, and wait. I often take a small drink to lubricate it so it slides on down.

Peripheral neuropathy pain is much better since I had the spinal cord stimulator implant in June. Last week the neurologist did a nerve conduction study of my hands and confirmed neuropathy there. The urologist and the ENT doctor (ear and tongue) suspect neuropathy involvement in those areas, as well.

The list seems to grow for many of us as we age.

I hope you're doing ok.

Jim

Jump to this post

Great to hear you're seeing a speech therapist. Also great that you still have your own teeth. I was wondering if dentures might have an effect on swallowing, but apparently not. Best of luck Jim.

REPLY
matrix | @squaredancer | Oct 16, 2017
In reply to @jimhd "@squaredancer I was reading through this discussion, and saw that I never responded to your post..." + (show)
@jimhd

@squaredancer

I was reading through this discussion, and saw that I never responded to your post back in March. How are you doing by now? Have you seen any change in your speech?

You asked about my swallowing. The speech therapist has given me a few tongue exercises, and I think they have helped. Maybe my tongue is stronger and is generating more pressure in my esophagus, so food is going through more easily. I stopped using a straw because it propels the liquid to the back of my mouth too fast, and it goes down and either starts to aspirate or hits the vocal folds. Either way, I cough and gag. I have esophageal dysmotility in the lower half, and it takes a while for the bolus to get to the bottom, especially soft breads and meat. I chew a lot, swallow twice, and wait. I often take a small drink to lubricate it so it slides on down.

Peripheral neuropathy pain is much better since I had the spinal cord stimulator implant in June. Last week the neurologist did a nerve conduction study of my hands and confirmed neuropathy there. The urologist and the ENT doctor (ear and tongue) suspect neuropathy involvement in those areas, as well.

The list seems to grow for many of us as we age.

I hope you're doing ok.

Jim

Jump to this post

Hello Jim @jimhd

I haven't been able to get back in to the system since I sent the last one until tonight.
But I see you have had enough people respond to you message.

Something that I missed telling you about using the pump, which I use for my overnight feeding.
This newer pump has 2 bags attached to it.
One is for water and the other bag is for whatever formula food you are on.
I do 4 cans of food on the overnight.
Each can is 475 calories and is 8 fluid ounces, or 237 ml and is called Two Cal-HN
The water bag I usually fill up to about 700 ml of water.
The water is needed to keep you hydrated and also to help digest the formula, it's called flushes. You set the pump up to the rate of formula you want per hour, such as 240 ml and at the end of each hour the pump will switch to give you water ever amount of water you per hour such as 120 ml per hour. Once you set it up you don't ever have to chance. All you have to do is prime the pump ever time you use it and the rest is all automatic according to your setting. What water is left over in the morning i just continue to do flushes.
Again I like the overnight feeding as it stays with me longer and I maintain weight better.
Also it gives me more free time during the day.

Now the gravity feed that I use during the day time is strictly one bag filled with the formula.
You can set the drip rate to what you want but it manual control.
Flushes still need to be done.
But the flushes are done at the end by using a syringe and pumping at least 120 to 180 ml of water into the feeding tube.
Then throughout the day you should flushes with water to keep you hydrated.

But I have also put liquids down like home smoothie, which are not real thick, coffee, not real hot coffee, or juices.

Thought you might like to know more information it.
You don't want to put anything down down that is really thick and plug it up.

And I disagree with you about when you may need to make the decision on needing a tube, or perhaps should I say when you will be ready for it.
But time will tell.
I went through this same things you are were you have to eat real slow chew everything, and etc.That time will begin getting longer and longer. Food gets cold or spoiled. Everyone else is done eating 30 to 45 minutes sooner then you have.
Takes 1 hour or more to eat a meal. people start complaining about it.
Your not getting enough nourishment
Start losing weight.
And the list goes on.and on.
You simply can do this at each meal 3 times a day and spending minimum of 4 to 6 hours just eating.

What has caused my swallowing issues or should I say sudden on come of the voluntary tongue and throat muscle from responding ?
You might say that swallowing have been an on going issue since after the first radiation therapy back in 1973 after my first parotid gland cancer journey on the right side. Through the years I was having to give up certain kinds of food that I just couldn't get down.
I love pizza and back in the 90's the meat lovers special became really popular and I just loved it.
But by late 90's I had to give up pizza.
Then it started to be beef, like steaks and etc. in 2000's
By then weight issues started coming in and in 2009 I agreed to the feeding tube, but I only used it part time.
Chicken wasn't an issue until after my 2nd journey with my 2nd the left side parotid gland cancer journey, which was actually my 3rd journey cancer in 2012. I had basil cell cancer on my nose in 2002/2003, which was the 2nd journey with cancer. It took 2 surgeries before they had cleared the margins and didn't need any treatments.
But this left side parotid gland cancer also required radiation therapy.
So the above gives you a very general ideal of what I mean over the years. It was a slow but steady decline where I had to give up certain foods.

But then at the beginning of 2014 I notice now I am getting down to just sea foods, eggs soups and etc.
Then all of a sudden in July 2014 i could get anything down not even liquids.
My voluntary throat and tongue muscles would move.
Mind you I have been having a number of EGD/Dilatation procedures done every year for a restrictor that was just below the airway.
That was the first thing everyone wanted to put the blame on.
Of course the GI denied that was the cause.
The ENT had no clue and really was concerned about finding out why.
Finally my radiation oncologist stepped up to the plate and took control of finding out what happened cause she knew the doctors were going to blame her for it.
She got me into a neurologist and he immediately had me set up with all kinds of nerve testing, which all came back negative.
He finally said it has to be from the radiation but not from 2012 but from back in 1973.
It get renewed energy from t he radiation of 2012 and was it destruction path again.
But my radiation oncologist didn't believe that we started reaching out to like Mayo Clinic and they rejected us.
And tried another neurologist at University of Michigan hospital. He said same thing radiation from 1973.
And tried several other ideas and all failed.
o here we are over 3 years later and still have no idea why so there is no diagnosis for this at this time
Perhaps this osteomyelitis problem is the cause as it has some of the same symptoms.
Once this heals wouldn't it be great if some of these other issues cleared up?

Well, I am or was an research engineering in my career 30 + year at Ford.
So I guess it's my nature to want to research things and get an understanding of what the doctors are talking about when I see them.
I call it proactive. Doctors my not like it but that's there problem/
But like you,it is also being of curious nature and also little bit of worrying goes on.for me too.
It's not being obsessive.

Springfield, MO today is one of the biggest areas where square Dancing is still alive today.
It's great that you are into music and piano. That's good therapy in itself.
Just like my square dance and round dancing is to me.
It's both mental and physical benefits.

TO bad about your sister and never getting closure on what cause her to pass on.

Well, this is a lot longer then I intended it to be

Take care.

GOD BLESS,

Tim @squaredancer

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Oct 17, 2017
In reply to @jimhd "@squaredancer I was reading through this discussion, and saw that I never responded to your post..." + (show)
@jimhd

@squaredancer

I was reading through this discussion, and saw that I never responded to your post back in March. How are you doing by now? Have you seen any change in your speech?

You asked about my swallowing. The speech therapist has given me a few tongue exercises, and I think they have helped. Maybe my tongue is stronger and is generating more pressure in my esophagus, so food is going through more easily. I stopped using a straw because it propels the liquid to the back of my mouth too fast, and it goes down and either starts to aspirate or hits the vocal folds. Either way, I cough and gag. I have esophageal dysmotility in the lower half, and it takes a while for the bolus to get to the bottom, especially soft breads and meat. I chew a lot, swallow twice, and wait. I often take a small drink to lubricate it so it slides on down.

Peripheral neuropathy pain is much better since I had the spinal cord stimulator implant in June. Last week the neurologist did a nerve conduction study of my hands and confirmed neuropathy there. The urologist and the ENT doctor (ear and tongue) suspect neuropathy involvement in those areas, as well.

The list seems to grow for many of us as we age.

I hope you're doing ok.

Jim

Jump to this post

Thanks for your response, Tim @squaredancer - a lot to think about. I haven't had cancer, thus no cancer treatments that can cause swallowing problems. At this point, I don't have any limit on what I eat. The speech therapist has voiced the concern that I'm in the lower half of normal bmi. I would have to lose more than 20 pounds to be underweight, and I still have to pay attention to what I eat, so I don't get back up to where I was a couple of years ago. I enjoy most food, with a few exceptions - bologna and mayo on white bread, canned baked beans, alcohol, brussel sprouts, velveeta, American cheese and macaroni salad with too much mayo.

Marilyn prepares meals that are well balanced, and most of the time meat is in a sauce or casserole, making it easier to swallow. I'll just have to enjoy food as long as I can. I really hope not to go down the same road my sister did.

I hope, though, that if I find myself in your position, I'll be able to face it with equanimity as you seem to. The same God gives both of us strength for the day.

Jim

REPLY
fiddlemama | @fiddlemama | Oct 29, 2017

I just got over a bout of aspiration pneumonia. 168 antibiotic pills later and I think I'm back to normal. Had a barium swallow and radiologist sent me packing after one film which showed achalasia of the esophagus. My gastroenterologist want me to consider a procedure on the esophagus and I know there are several to be considered but don't know precisely what they are. Have been trying to get an appointment at Mayo's but have not yet succeeded. Any suggestions? We were In MN in June but or unrelated problem

REPLY
Ryman | @ryman | Nov 14, 2017

I haven’t posted on Mayo Connect for some time. I had some issues and had a pacemaker put in 5 weeks ago. had some complications, not with the pacemaker but other things. I am still not doing so well. Lately when I get up in the morning I have very excessive saliva, nausea and pain in the chest. Around noon it clears up. What is going on? Has anyone else experienced this? Through all of this I have lost at least 10 pounds and I was already underweight. I have been referred to a gastroenterologist but don’t have an apt yet. Thanks for any info or help you can offer.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Nov 14, 2017

Hi @ryman,

I'm sorry to hear about your symptoms. I moved your message to this existing discussion so that you can connect with others talking about esophagus issues. While they may not share the same condition as you, they may have similar experiences with regard to your symptoms of excessive saliva, nausea, and chest pain.

@ryman, have you informed your cardiologist about these symptoms?

REPLY
1 reply
Ryman | @ryman | Nov 14, 2017
In reply to @kanaazpereira "Hi @ryman, I'm sorry to hear about your symptoms. I moved your message to this existing..." + (show)
@kanaazpereira

Hi @ryman,

I'm sorry to hear about your symptoms. I moved your message to this existing discussion so that you can connect with others talking about esophagus issues. While they may not share the same condition as you, they may have similar experiences with regard to your symptoms of excessive saliva, nausea, and chest pain.

@ryman, have you informed your cardiologist about these symptoms?

Jump to this post

No, I haven’t. I was in the ER for over six hours yesterday. They did an EKG and some other tests.

REPLY
View MoreView Less
Please sign in or register to post a reply.