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FAILED POEM - OPTIONS???

Posted , 12 users are following.

abigail66654
abigail66654

Hello all:

I had the POEM procedure done on April 15th of this year. For about 6 weeks i was pretty good. Then i thought i was getting acid reflux but it was not acid reflux it turned out it was food fermenting at the bottom of the esophagus. Or at least that is what we think now. I am right back where I started. Today I had a barium swallow done and we go the results back this afternoon my barium swallow is exactly the same as it was before the surgery.

“The esophagus had similar degree of diffuse dilatation with relative mild-to-moderate narrowing at the gastro esophageal junction There was no mucosal lesion or other stricture present No esophageal luminal filling defect present There was a severe decrease in primary and secondary peristalsis No tertiary contractions witnessed”

I have done some research on the web trying to find out what is done after a failed POEM procedure. The doctor is suggesting using a balloon dilation however when they did the surgery they said my esophagus was very enlarged and very tortuous and crumpled in places. My concern is that a balloon dilation will have to be so large it may result in rupture. Comments please. Other suggestions.

This damn disease is ruining my life although I have never had the wasting others speak about I am\ tired all the time and my stomach hurts all the time its making it impossible to work and I am self-employed if I don’t bill I can’t pay the bills….

Thanks in advance for any help or studies you can point me at.

By the way my husband and I just bought domain with the express purpose of hosting a web page that is dedicated to nothing but achalasia and the study and treatment of this disease. Not just a discussion board but a centralized web resource for all the studies being done on the disease. Once we have our first set of pages up I will post here for anyone who would like to be involved. We would like to try and recruit some researchers and doctors as well.

Please understand we value Patient as one of the only sites we have been able to share experiences on and get information on but we think it would be great if those of us with this disease had another outlet as well.

0 likes, 27 replies

27 Replies

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  • MeInPA
    MeInPA abigail66654

    Posted

    I was wondering if this is still an active thread? 
    • AlanJM
      AlanJM MeInPA

      Posted

      They do run on at very great length, and nobody seems to be able to close them down!   But your post did come through OK.
  • MeInPA
    MeInPA abigail66654

    Posted

    Some information about my Mother.  Her POEM surgery was performed on August 7th, 2018 by the Allegheny Health Network (AHN) at the West Penn Hospital in Pittsburgh, PA.  As I said, she has had a similar journey as outlined by some of you folks.

     

    Last week, I engaged Dr. John Erik Pandolfino from the Northwestern Medical Group in Chicago, Illinois.  He wrote the following paper:   Who has agreed to consult. 

     

    Dr. Pandolfino has requested “The original images from the barium esophagram and the manometry file in MVS format on a disc- that I can upload”. 

     

    My Mother reports having “barium test(s)”.  Is “manometry” common/standard part of a barium esophagram?  Or in addition to the standard test?

    Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

    • AlanJM
      AlanJM MeInPA

      Posted

      The barium meal swallow test is a procedure where you swallow white liquid whilst being x-rayed, and the liquid shows up as it progresses (or not) through your oesophagus.   The manometry needs different kit, and measures the pressure exerted by the muscles in the oesophagus at various points between the throat and the stomach.   An experienced specialist would require both, and indeed an endoscopy examination that would show whether there were any physical obstructions that might be contributing to the swallowing difficulties.   Dr Pandolfino is an acknowledged authority on the condition.
  • michele36489
    michele36489 abigail66654

    Posted

    I am in an absolute panic. POEM surgery June 1 2018. Doing well until I tried to eat something too soon. Now the same problems I started with are happening constantly. I go to swallow...like you automatically do, not food and I can't. I start to panic, grasp a drink and pray that it works. I don't.know what to do. I am so scared

    • AlanJM
      AlanJM michele36489

      Posted

      The difficult thing, but probably most important, is to try and relax, because tension will not help the condition.

      Swallowing drink when things get stuck tends to make things worse because it can build up more pressure.

      It will all depend on whether the food that got stuck is still there or whether it has cleared into your stomach.

      I suggest that you sip liquids slowly, for a while and see whether your system is coping with this OK.   The gradually experiment with less liquid food but stay clear of anything with a difficult texture like stringy meat, skins or anything that might congeal, like soft bread and rice.

      Contacting your surgeon for advice would also be a prudent thing to do if you are worried.

    • Jacci1959
      Jacci1959 michele36489

      Posted

      Michele I had it a year ago I can swallow my medicine again but things still hang in my throat. I went to the doctor yesterday and they want to try medicine again that didn't work before surgery. That's to see if it will help the top part of the esophagus so that things will stop stacking up. Maybe also help the mucus in the throat I hope. I've gotten sick to my stomach twice now I hope that doesn't start again. 

  • jeremy79519
    jeremy79519 abigail66654

    Edited

    hi my names jeremy I had the POEM procedure done last march and have recently in last month having same problems again also now when I get gas hurts sometimes at night trying to burp now with this covid-19 going on I don't know what to do procedure was done in Toronto Ontario...

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