FAILED POEM - OPTIONS???

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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.

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  • Posted

    So sorry to hear about your failed POEM.  My son was supposed to have the poem last Friday however the insurance company decided to deny at 15 hours before the schedued surgery.  We have been in a battle with them for the past several days and they keep claiming it's still experimental.  

    We have decided at this point to pursue the Heller.  My son just wants it fixed. Very happy to hear that you are trying to design a site for achalasia.  It is very frustrating to find try to find out information. Best of luck to you!

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    • Posted

      Thank you. I will say this i think if you are not end stage the POEM is a very valid option as is Heller for differrent reasons. With your sonfor what its worth based on all my reading its better to go surgical either Heller or Poem rather than mess about with ballons and Botox. I wish you son much luck and hope you will let us know how he is doing after surgery.
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    • Posted

      My insurance informed us they refused to pay for POEM 1 hr before surgery. It took 3 appeals with the 3rd going to the state appeals court for BCBS to be forced to pay.

      I had the POEM procedure on July 29th. No more regurgitation, I've gained 6# of 40# lost but heart burn is horrific!!!

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  • Posted

    The barium swallow x-ray will show the oesophagus and how it is shaped as it deals with the liquid you swallow.   I am wondering how things were in the weeks immediately after the POEM procedure?  

    ?There is a small risk of rupture with dilatation but this is unusual if the operator is skilled.   If the worst happens, it can be repaired and it will normally heal OK but it is a long process that can make you very ill, and it is clearly something to be avoided if possible, but the fears about rupture are worse than the reality.   I have had a ruptured oesophagus personally, and have had a couple of dilatations since, so I recognise the fear.

    ?I think you should probably have another high resolution manometry test that might well pinpoint exactly where the problem is occurring.   It is feasible that the surgeon made a judgement about how much muscle to cut, and treated you conservatively;  and that there might feasibly be an option to extend the procedure.   But you really need to be in the hands of a very experienced specialist to get this right now, and a second opinion would be seen as prudent all round.

    ?Passage of food is often simply gravity-based if the persistalsis muscles are not operating, and having a dilated lower oesophageal sphincter would be simply part of that system.  But you would need to be aware of, and deal with the reflux problem afterwards, especially at night.

      

    ?I think you may be at the stage when revision surgery needs to be contemplated, firstly to see whether your oesophagus can be re-shaped, if possible;  or the POEM either extended or converted to a myotomy and fundoplication;  or at the last resort, your oesophagus removed.   I know a lot of people who have had their oesophagus removed, and whilst nobody would recommend the surgery unless it was necessary, there are, rare, cases when your quality of life would improve without it.   It is a very specialised area of surgical exopertise.

    ?Meanwhile you do need to find ways of taking in nutrition as best you can, perhaps with liquid supplements, and it would be worth getting your vitamin / mineral levels checked.

    If you visit the website of the oesophageal patients association, and go to the oesophagus, and Achalasia  you will find a link from which you can download 'A Patient's Guide to Achalasia'.   This will be a good place to start, not least because of the links to groups in other countries, one or two research studies, and a contact point to discuss ways forward with other sufferers.

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    • Posted

      For 4 to 6 weeks after the procedure things were pretty good not fabulous but not horrible either. I was able to drink water and eat small meals i did not have the constant urge to clear my throat or the sensation of having something stuck in my lower throat, I was no regurgitating, then around week 4 or so  I started having a burning sensation almost like severe heartburn at first it seems like it was in my stomach but then I realized it was more in my lower esophagus ( please note that I have never had or experienced any symptoms of GERD even when this first started)  My surgeon had prescribed both ranitidine and  omeprazole to me after the along with Carafate POEM and it was my understanding that this is fairly common and done to ensure that if you have some acid reflux after the procedure has loosed the LES you won’t get acid erosion.   I took both of these medications and they did not seem to help if anything the burning sensation was getting worse and my ability to eat was also getting worse. A few things I should make clear:

      1.      On my first high resolution manometry study which I had in February of this year I failed all ten swallows and they initially diagnosed me as having Achalasia Type 2, during the surgery they changed that diagnosis to Achalasia Type 1 which based on the most recent studies I have been able to get my hands on is being considered by some researchers to be the end stage of type 2 ( somewhat confusing at least in terms of number order)

      2.      During the surgery they discovered that my esophagus was very distended and tortuous and this did create some problems in terms of the POEM, surgery was scheduled for 90 minutes. I was in for almost twice that amount of time. ( my surgeon has done this procedure over 150 times and is the head of the Esophageal and Lung institute at West Penn Hospital Pittsburgh.

      3.      I evinced NO SYMPTOMS of achalasia before September of 2015. My first set of symptoms was needing to clear my throat often and having the sensation of having something stuck in my throat. Within a month of the onset of that  symptom I them found myself with a tendency to choke when laying down flat on my back. By October I had begun to find myself after eating or even drinking one glass of water feeling like everything was just kind of sitting at the back of my throat. The regurgitation started in November. Please also note I have never experienced wasting or weight loss, quite the opposite in fact.

      Since the Surgery which took place on April 15th of 2016 here are the medical events that have happened;

      1)      The morning after the surgery they did a test to ensure that I had no leaks, they seemed very concerned about this because they had such difficulty with the POEM due to how distorted my esophagus was. The first swallow they gave me of the dye didn’t go through after 15 minutes so they made me wait and swallow again, the second time it went through and they said all good you can go home. Jell-O and clear liquids for the first few days.

      2)      I was back on soft foods within four days and solid foods within two weeks. No problems at small portions, drank water.. all good for about four to five weeks.

      3)      At the end of week two while at home I had a massive allergic reaction to one of the medications: I woke up on a Saturday night/Sunday morning burning and itching all over head to toe bumps and swelling in my throat – My husband gave my liquid Benadryl and then took me to the ER where they gave me an ephedrine drip and asked me about the medications I was on. The ER doctor didn’t seem to think that omeprazole, ranitidine or Carafate would cause this. He seemed to think I was having a delayed non serum reaction to the Doxycycline they gave me before and during surgery. All I know is it took a full week for the rash to go and I was bed ridden for five days taking Benadryl every four hours in order to get relief from the itching and burning. Since that time I have discovered on my own that Carafate does seem to cause me to itch as does omeprazole. So these days to be on the safe side if I need it I take ranitidine.

      4)      After the allergic reaction I started to notice that I was feeling kind of a vague nausea I was still able to eat and drink fluids without feeling like I was choking although I gradually started to have to clear my throat again.

      5)      When I went back to the surgeon for follow up at week 4 after the surgery I told him about the  allergic reaction which I had already reported to his office nurse. I also told him that despite the antacids I had a burning sensation and felt nauseas, we discussed my itching problem with the Carafate and omeprazole and he indicated that although he didn’t think I was having an allergic reaction to those medications, if I was then it was most likely to the be the Carafate and then possibly the omeprazole but that we needed to use at least one acid reducer so eliminate those and continue to take ranitidine. To this day they have not been able to tell me if I had a delayed non serum reaction to the Doxycycline or an actual severe allergic reaction to Carafate or ranitidine.

      6)      It was at the above appointment that they asked me to take the ranitidine twice a day and to make sure I ate smaller portions chewing thoroughly and enabled the esophagus to heal from any acid erosion  and this was when they explained to me just how tortuous my esophagus had been and what some of their difficulties were with the POEM but that they thought it may still have worked since at this point I was not having full blown Achalasia symptoms just the throat clearing.

      7)      I went back for another follow-up appointment at week 8 and explained the symptoms were worsening, and that I was back not just to constant throat clearing but also to regurgitation and spasms in my chest ( which I had not had before) as well as the constant feeling of fullness in my throat.  They asked me to go back on a soft diet and eat very small meals six to eight times per day and explained that they still thought the POEM had worked but that what I have now is basically a really slow running drain at the bottom of my esophagus like a funnel. Frankly as I sit here writing this, (0ver the period of about three hours) I have had a hot cup of coffee and one cup of mashed potatoes, I feel as though I have a lump in my throat and I can hear the sounds of gurgling, draining and other noises my esophagus is making. I will get a spasm shortly and then some of it will go down and the rest may come back up…...

      8)      Before going back for my follow up appointment at week 12 last week I spoke to my regular gastroenterologist about what was going on and he actually set me up for the barium swallow I had last Wednesday. I have the results there is no difference between the results from the one before the surgery and this one expect this one is a little worse….

      9)      I went back for another follow up appointment at week 12 this was last week (Thursday, I took the initial results from the last barium swallow with me) . I finally got them to admit this had failed. I had to actually explain to my doctor that I have, apart from the 'A Patient's Guide to Achalasia' ,read every study I can download off the internet about Achalasia, that I understand POEM does not always work that I may have mega esophagus that I don’t blame them I just want an open honest discussion about what the true state of esophagus was and what my options are for treatment. I don’t expect a cure or a miracle just honest discourse.

      I am scheduled to go in this Friday for an EGD, if they don’t find scarring or another problem they may do the balloon dilation at the same time ( I know this is a temporary solution but if it buys some time to get my financial house in order before serious surgery I will do it. If they do a find a problem then it will be about figuring out if it is Resection , Heller or Esophageal removal. I would be interested to know if any other patient reading this has gone from no symptoms to this level of severity in such a short time. I would also like to know from the people who are at end stage what [procedure did they end up having done and how well has it worked.

       

      I appreciate your response to me and I wanted to respond back in as thorough as way as possible as you may have some insights or suggestion I have not yet read about or thought of. 

      Best

      ?AD

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    • Posted

      It does seem very unusual to have developed such severe problems in such a short time.   The other thing that seems unusual is the description of your oesophagus as 'distorted'.   I can understand 'baggy', and 'mega' oesophagus, which is probably created by the weight of food remaining there before it goes into your stomach, but I wondering whether it is anything other than this?  You might have a 'pouch' that collects saliva etc and creates the gurgling.  If all this has been fairly recent, there might be better chances of your oesophagus not losing its tone.

      ?Achalasia is usually caused by the nerve endings not driving the muscles properly for the peristatlsis, or successive muscle contractions that should take food through into yor stomach, and the lower oesophageal sphincter (LOS - valve into your stomach) being clamped tight.   But there are variations, and the high resolution manometry is normally good at analysing where the problems are occurring.

      ?If the pressure from a closed LOS is greater than the upper sphincter, the pressure will cause upward regurgitation.

      ?These operations do not necessarily cure the spasms, which are sometimes caused by some form of blockage; and sometimes nerve issues, and sometimes other unknown causes.

      ?There are other motility conditions (eg oesophageal asthma) that have presumably been ruled out.   Have they given you a test for candidiasis /thrush?

      ?Tension and stress will make things worse, and you will probably always have to balance any surgical / medical therapy with relaxation techniques around food.

      ?Frustrating though this is, a quick recourse to further surgery may not always be the best immediate option.   Certainly you would need a thorough diagnostic check on exactly what is happening (manometry etc).   If at all possible try and give your oesophagus as much rest as possible by having as much nutrition in liquid form, little and often.   Keep a good upright, relaxed posture whilst consuming food and drink.  Make sure you do not overload it by contiuning to swallow if it has not gone down past your diaphragm. There may be some place for medication (eg Buscopan, amyl nitrate?).  personally I would also dip a toe into the water of complementary therapies (eg acupuncture, relaxation techniques).

       

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    • Posted

      Good Morning

      They have tested me for Candida Thrush the test was negative. I will know more after this week’s EGD. Manometry was done before surgery. I saw the results they were classic for type 2 but as mentioned above they told me after surgery it was in their opinion type 1.

      I have been prescribed hycosimine sulfate for pain, doesn’t work for me. I also had Nifedipine to take 30 to 45 minutes before eating. My blood pressure tends to run low so the first experience with this was interesting. Luckily i am married and my husband caught me just as I hit the floor from the sudden drop in my blood pressure he then had to have me drink some coffee, i can take this as long as i drink 1 cup of very strong coffee beforehand and do some exercise.

      I have as of today switched myself almost exclusively back to a liquid diet, water, soup, small amounts of coffee etc. My reasoning is that I want my esophagus to be as empty as possible for Fridays EGD and everything is passing so slowly i am concerned that if i don’t stop eating even soft food it will be too "messy" in there for them to see what is going on. Pardon my gruesomeness of description but I had the Barium swallow last Wednesday and i am still passing barium colored stools this morning and actually spit some barium up a day ago which is my other concern, my digestion seems to have slowed to a crawl. I really appreciate the advice and the insight you have shared with me. I will update once I have some more information but I do know that because of our precarious financial situation I will have to make some decisions rather quickly.

      Kindest regards

      a

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    • Posted

      I'm still absorbing the information here. 

      AD: My mother's sequence of events is similar to your experiences.  She is hardly able to swallow now.

      Letting you-all know I'm here and reading...

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    • Posted

      It is a rare condition so I quite agree that this can be quite a lot to absorb, and it is also important to appreciate that only doctors can diagnose the problem after the patient has certain tests.   One thing that might help, if you have not already seen it, is 'A Patient's Guide to Achalasia' that you can download from the website of the Oesophageal Patients Association under the tab marked The Oesophagus and then Achalasia.

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  • Posted

    Hi 

    My Elder Brother also facing this problem(poem failed,after 10months) The doctor is suggesting using a balloon dilation ,can you please let me know,did you gone to ballon dilation,plz let me know it helps us

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  • Posted

    Hi,

    I have failed POEM too (didn;t help, no difference before and after surgery) Could you tell me what did you do next step after failed surgery ? I'm looking for any solution for me... 

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  • Posted

    I had the poem, botox, channel calcium blocker and dilution nothing has worked for me instead of losing weight I have gained how I don't know. I don't feel good and sleep a lot so maybe that's why. I don't know if anything else can be done. I just had my second dilution and I did have nodules that they removed but came back ok. I'm afraid that I'm going to end up with esophagus cancer

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    • Posted

      There is no direct link between achalasia and oesophageal cancer as far as I am aware.   The link with oesophageal adenocarcinoma is persistent reflux, Barrett's oesophagus and then dysplasia but the risk of this is very low unless you have been told of anything particular to your own condition that increases your risk.

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    • Posted

      I do have dysplasia my esophagus has spams top and bottom but it is a little better at the top. I think that was due to a cyst that was removed 6 weeks after that a pill hung in my throat and this is what they found when I had lot's of test done.  I don't understand the weight issue cause I don't eat much at all. I know this is getting worse cause some of the soft food I've been able to eat just stacks until it comes back up. Also have started having a lot of diarrhea not everyday but almost. 

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    • Posted

      I do have dysplasia my esophagus has spams top and bottom but it is a little better at the top. I think that was due to a cyst that was removed 6 weeks after that a pill hung in my throat and this is what they found when I had lot's of test done.  I don't understand the weight issue cause I don't eat much at all. I know this is getting worse cause some of the soft food I've been able to eat just stacks until it comes back up. Also have started having a lot of diarrhea not everyday but almost. I also have reflux for years. 

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    • Posted

      Do you know whether it is high grade or low grade dysplasia? If it is high grade, they would be thinking about radio frequency ablation or are moving your oesophagus surgically (sounds scary but people do cope ok without it).

      Then the other priority is to try and regain some swallowing capacity, and to try and combat the spasms, perhaps with medication. It is complex and I hope it can be resolved well for you

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