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

@danybegood1

@brie87144, Keep looking Brie. You’re being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

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Magnesium is  amazing, I so agree, however it
will cause diarrhea for some and me included. It will relax muscles, I do
take it occasionally, but must not take the dosage as high as you are able to
consume. Infact, I did take some last night and today your email was waiting for
me. Most of us need Magnesium via tablet.
Thank you for your concern.
 
 

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@kanaazpereira

Hi @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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@squaredancer Sorry I missed this earlier, going back to mayo. I have appointments the 24-28th of April. They have to squish them altogether since I live out of state.

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@danybegood1

@brie87144, Keep looking Brie. You’re being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

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@danybegood1 wow you have had a rough road. Your doctors sound just as bad as he ones here in Albuquerque. I was divorced by 2 doctors who didn’t have time for a patient like me here at home. The first 6 months with mayo they kept telling me maybe iall my issues are psychological. I’m probably the most annoying dreaded patient out there lol. I won’t take no for an answer and won’t let them push me off to Psych when I had a perfectly normal psych exam. I’ve definitely learned to speak up and not let them push me off. Especially cause I am traveling there every month and it’s been expensive, that’s not even including my copay and deductibles noticed that when I annoy my consultative medicine doctor, he gives me whatever test or referral I’m badgering him for lol. He also doesn’t like that I am well versed on so many things medically because he can’t just ramble off something I don’t understand and be okay with it. If I don’t understand I make him explain it. Whatever works. I hope you find answers

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@danybegood1

@brie87144, Keep looking Brie. You’re being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

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@87144, Brie? You go girl! Yeah, i had a dr tell me my symptoms were all in my head when i started itching. What a jerk he was, unfortunately we have them in all walks of life. Ive had a few docs that were pretty weird. It couldnt possibly be me. Ok this little computer is supposed to catch punctuation for me. Oh well, i cant be bothered. You keep at the docs and i will too. Im down to emailing them and suggesting which blood tests i need. Hepatitis, lupus anyone?
Sincerely, Judy

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@danybegood1

@brie87144, Keep looking Brie. You’re being proactive with your doctors. I hate the clinic now where i go. Ive been going there for 22 years. Now my cardiac doctors are in the same clinic. They must hate my guts when i try to be proactive, or maybe im doing it wrong. I do lots of research online and ive started trying to diagnose myself. hahaha So i ask the dr why dont we take a hep-c test? And she says well we did one in 2003 and if you havent had a transfusion or used needles i probably dont have hepc. So i say, no but ive had a million blood draws since then. I also said no disparagement to your clinic. But hepc was poo pooed by my dr, also dont thinkd i have lupus, which i had a test for in 2009. What? I cant have it at a later date? And ive also found out that you dont have to have the butterfly rash on your face. You can have the rash anywhere. They must think im a hypochondriac, or i want to be sick. No, no, no. I want to be better because my grown kids still need me so i have to find out whats going on with me so it can be treated. I have chosen new drs because of their attitude towards me or mistakes they have made in my care. A dr i had in 2003 prescribed quinine for my restless legs. I developed thrombocytopenia purpura. I had nausea, vomiting, and my body was beginning to bleed. Im not mad at my dr for this, im mad bc it took them 3 months to find it. My platelets were down to 5000 and nobody found it. I remember the phone ringing as i got back from a dr visit, Judy you have to go to the hospital now. The dr on call at the hospital saved my life, and whoever saw my platelet level. Im po that i have to be my own medical detective. The drs should be the ones to do this. Im so sorry for this long post which really turned into venting. Keep at it Brie. Remember, you are the best friend you will ever have. Love, Judy

Jump to this post

@brie87144

Let me tell you that having mental health issues on top of a whole list of illnesses and problems makes for a difficult time working with doctors in various specialties. My pain specialist has been an exception. Neurologists – I’ve been through 4 or 5, with no noticeable help. The last one looked like a really good one, but he moved a few weeks after I saw him. Dysphagia – I had an esophagram two years ago, and I just now got my pcp to do something about the findings. I have an appointment with a speech therapist, and I don’t really know where to go from there. When eating became an effort, it became less of a pleasure. Beside esophageal dysmotility, I’m trying to deal with idiopathic peripheral neuropathy, arthritis, and depression, anxiety disorder, PTSD and suicidal ideation. Only God knows which one will be addressed first, and how addressing that will affect the other challenges. I try to live one day at a time, learn what lessons I can from the past, and anticipate improvement however it shows up. My foundation is God, who is love, and who loves me, and cares about what’s going on in my life, and that whatever this life brings, I have a firm assurance of an eternity spent in His presence. Having a brain that isn’t working right screws with all of my values and beliefs, but I’m alive today because of the foundation I have.

Jim

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@hopeful33250

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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I came across this article for those with Esophagus issues.
http://www.medscape.com/viewarticle/876444?src=wnl_edit_tpal&uac=202198MY
Phil

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@kanaazpereira

Welcome to Connect, @marksnow. Thank you for joining this discussion and for sharing information. May I ask, when are you scheduled to have the surgery?

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Hi @marksnow,

We’d love to hear from you; how are you doing after the Fundoplication Surgery?

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@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

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@jimhd

@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

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@font-face{font-family:Calibri;panose-1:2 15 5 2 2 2 4 3 2 4;}@jim. Thank you so much for remembering me.  If I may ask, where did they implant the stimulator.  I'm not ready for this yet, but my daughter might be.  I'm glad it has helped you.  Any port in a storm I say.
Thanks, Dany

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@jimhd

@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

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@danybegood1

The generator/battery pack is on the left side of my lower back, above the belt line. They want to implant it as close to the spinal cord as possible, to avoid energy loss to the wires that are connected to the nerves. I am a bit of a problem because I’m so thin. I don’t have any extra fat to cushion the unit, so I do feel it when I lie on my back or lean against the back of a chair. It can get sore, but I think that’s pretty unusual.

Jim

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@jimhd

@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

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So much has happened since march ugh. I don’t even know where to start. After this post I met with the neurospeach Dr which came back normal as well as the video barium swallow test. I also had and endoscopy which reveled a schatzi ring (sorry if I miss spelled that) and weak lower sphincter. He believes the mis to lower esophagus isn’t functioning properly or the nerves aren’t responding as they should so it’s spastic. I also TRIED to have the esophageal manometry test. I failed miserably. I couldn’t complete it because they couldn’t get the scope thing down with out me throwing up. That was the worst hour of my life. That test is awful. The GI dr said I do have some moderate midesophageal dysphagia.

With all that said, they all refuse to do anything to help me because of my Ehlers-Danlos. So all they have me doing at this point is taking 40 mg of Prilosec 2x daily with 450 mg of ranitidine. That does seem so do anything either. I’ve resorted to sleeping in a recliner almost sitting straight up. I’ve restricted myself to almost a liquid diet because solid are just a sure way to be in pain. Not sure what or if they ever do anything.

Just as the refused to do anything, my septum collapse and created s bone spur in my left side of my nose and I can’t breath out either side of my nose. Sounds great right? Stupid Ehlers danlos syndrome seems to have the upper hand here. We were trying to let my nose heal some, (I also have a large ulcer in my nose), but that didn’t work and now I have exposed cartilage. So next week we are headed to mayo for surgery to get my septum rebuilt, a skin graft, and something for my valve support. Not really sure. Lol sorry

As far as Drs. I really like my GI dr. And my ENT. I have yet to find a neurologist within mayo or out of mayo that I like. They all act like they know everything even when u can show them they are wrong they don’t wanna hear it. I gave up on neurology. Which sucks for me because of my neurology issues. I am like you that I prefer they don’t dumb down anything because 90% of the time I understand just fine, expect with GI and the Ent. Man they speak foreign languages. It took me over 2 hours to understand my report from the ENT about my nose. The only thing I understood out of all of it was “her nose is severely screwed up”. Maybe not so much in those terms but pretty much haha

So that’s my chaotic life right now. Hopefully surgery goes smooth so I can get back on track with GI and nothing else gets screwed up along the way.

Man that all sound like a pain! I totally feel for you. My stomach valve stays 1/3-1/4 open pretty much all the time due to the weak valve and the hernia. I wish they would just fix one of the 2. Hopefully things don’t start getting worse for either of us. It is awful enough.

Brie

REPLY
@jimhd

@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

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I had similar problems. Ended up with a PEG Tube. Solved digestive and nutritional issues. But it is a big life style change since I can never be able to eat food again.

REPLY
@jimhd

@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

Jump to this post

@fig827

My sister went the peg route. It was a really rough go for her. As I talk with doctors, my anxiety level spikes, thinking of all she went through when she could no longer take anything by mouth.

Jim

REPLY

@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

REPLY
@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 @jimhd .

I see you sent me 2 post. I wish I had seen it before I sent the other one.

I am glad that the doctors have finally linked some of your issues to neuropathy system.
What are they or can they do for those problems, besides pain medication?

Well, I am glad you have learned how to get some kinds of food down.to your stomach.

I had to learn all different kinds of methods to do the same thing until 2014 when I lost all swallowing capabilities.
As I said before, I finally accepted the fact that I wasn’t going to get enough nourishment eating orally and had my first feeding tube.
I only used it part time. I have been struggling for years losing capabilities of oral eating. I had to keep deleting items that I love.
But when you’re as active as I was all those years and needed the energy I had to do something. So I was doing both feeding tube and oral eating. That twas giving me the energy I needed.
The nutritionist has me on a very high cal formula. So what I was still lacking in calorie input by oral eating, I was getting it from tube feedings.

So perhaps I was getting use to tube feedings so when the time came and I could no longer eat orally I had no issues with it all.
Sure you have to give up all the foods you like to eat because of the taste, but that’s all in your mind.

But ,if you haven’t been told this by your speech pathologist, I am going to tell you right now.
You are playing Russian roulette every time you eat right now and taken the chance of a fatal aspiration event.
I was told this for many years by my speech pathologist, but she always said I knew how to deal with it.
But she always warn me that there will be a time when you will not be able to stop an aspiration event and it will kill you.
So when it got to the point when I could even get my milk soaked rice krispies or my soft poached eggs down I knew it was time to quit playing the Russian roulette game and go full time on the feeding tube.
People make a bigger issue out of using a feeding tube then what is necessary.

So my advice for anyone in this situation to get a feeding tube now and get use to it .
I have had one for almost 10 years now and it has become a part of me and it ‘s no big deal.
And full time on it since 2014.
Yes there can be some inconveniences at the beginning with scheduling the feedings but eventually one figures it all out.
I like doing my overnight feeding using a feeding pump, then I only have to do one during the daytime.
Using the pump allows you to adjust the flow rate to your needs, verse the gravity feeding.
When you wake up your all set to go.
Also using the pump at a slower rate verse the gravity feeding, allows you to maintain weight better.

I am still physically active and until I had these hearing issues I was square dancing and round dancing 4 or 5 nights a week.
I was traveling to different Dance conventions all over the U.S. Traveling by plane or land.
Now I am just traveling around the country to different doctors.
But when I getting my hearing back, next year I plan on going to different dance conventions again.

Well I could go on about this topic, but it ‘s time for my medications and I’m getting very tired.

Take care Jim.
Hope to hear from you soon.

GOD BLESS,

Tim

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