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POEM or Heller Myotomy? What are the pros and cons?

Posted , 24 users are following.

s091a
s091a

Hi all,

I decided to have the Heller Myotomy and got sheduled to have it on Wednesday.  The reason I chose this over POEM was due to the fact the POEM is a new procedure, and there are no long term studies on it.  

I talked to the POEM surgeon on the phone yesterday, and what I heard him say (note - I might heard wrong) is that POEM is more effective in reducing my esophageal spasms than Heller Myotomy.  

I am confused on what I should do.  I am collecting pros and cons for each procedure to determine which one would be the best choice for me.  

Any input is greatly appreciated!  Please note, I have type 2 Achalasia, and I am looking for a treatment for my esophageal spasms. 

Thank you,

Sonia

 

0 likes, 42 replies

42 Replies

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  • Pasha333
    Pasha333 s091a

    Posted

    Honestly? I think it is best to do your homework on both options and then decided on your personal situation. Whilst one condition affects people and the diagnosis is the same, it will always manefest itself in a personal way and will always throw up different issues.

    I have good things about both. My husband is having the Hellers in the very near future.

    Take Care x

    • s091a
      s091a Pasha333

      Posted

      Thank you for your response.  My gut is telling me this is not a simple achalasia case.  It seems like I also have some triggers due to acid reflex.  Based on this, I am tempted to get Heller over POEM.  The only thing I am confused by is the POEM surgeon saying that Heller will not help with the spasms, and that for Type 2 achalasia, POEM is the best procedure.  I am hoping to discuss this with my doctor before making a final decision.
  • Pasha333
    Pasha333 s091a

    Posted

    Er, I too was under the illusion that Hellers did eliviate spasm symptoms... One of the reasons my husband is having it!
    • s091a
      s091a Pasha333

      Posted

      I talked to my doctor who diagnosed me this week.  He said that POEM and Heller will give me the same results, and I need to go with what I feel comfortable with.  After going back and forth on my decision on whether to get POEM or Heller, I decide to have Heller Myotomy.  I am having the surgery on Monday, Nov. 10th.  

       

    • Pasha333
      Pasha333 s091a

      Posted

      I wish you all the best for the 10th x. My husband is still awaiting his call
  • christine82084
    christine82084 s091a

    Posted

    I had my POEM procedure 2 1/2 years ago and have had good results.  I chose this over the heller myotomy because if there are further problems they can go in again and do the heller myotomy.  I also chose it because there was going to be less scaring.  It was a fast recovery and I was off of my liquid hydrocodone by day 3 and using ibuprofen for pain relief.   The two procedure are almost the same because the same muscles in the esophagus are cut.  The only difference is if they go through the mouth or belly to reach those muscles.

    Good Luck,

    Christine confused

    • amy56547
      amy56547 christine82084

      Posted

      Hi Christine.  I was recently diagnosed with Acalasia and am trying to decide which procedure to have.  I'm glad you've had good results with POEM.  You said that you chose it because they can go in again if needed.  Can't they go back in again with the heller myotemy?  Also, do you have problems with GERD now?  I heard something about this being a bigger problem with POEM because they don't do the dor fundoplication where they wrap part of the stomach over the LES to prevent GERD.  Thanks for any info. you can pass on!  Amy
  • amy56547
    amy56547 s091a

    Posted

    Hi Sonia.  I was recently diagnosed with Acalasia but have had esophageal spasms for many years.  I also have type 2 Acalasia so we have these things in common.  My biggest concern with the decision on which procedure to get is how the spasms will be affected.  Of course, I want them to go away, but I'm also concerned that they could somehow get worse.  Could you please let me know how things have progressed with you after your heller myotemy.  Do you still have the spasms? I hope that you had success and are feeling better!  Amy
    • s091a
      s091a amy56547

      Posted

      Hi Amy,

      See my long reply below.  Summary - I am still having spasms and difficult swallowing.  I wish I got the POEM since I have side effects from the Heller Myotomy.  I am still a little sore around my incisions.  

      Good luck!

      -Sonia

  • s091a
    s091a

    Posted

    Hi all,

    It is really hard for me to write this since it makes me very emotional.  I had Heller Myotomy.  The spasms never went away.  I thought atleast the difficult swallowing would go away.  That did not go away either.

    I chose Heller because of the extra procedure - fundoplication.  The doctors had told me if the POEM did not work, they can always go back and get the fundoplication but I did not want to go twice for surgery.  It turns out they did not do the fundoplication on me.  They said that I did not need it.  This is something they could have checked before my surgery and have told me.

    I kept asking my doctor for advice on which surgery to get, and he told me it was up to me and they both gave the same results.  I really regret not getting the POEM procedure.  My incisions are still not healed - they get itchy, and sometimes pinch a little.  I never had surgery before, and I wish someone told me about the long lasting aches from the incisions.  Finally, everyday I see my five little incisions which is a reminder that the surgery did not work for me.

    Background info:

    I was originally diagonosed with Achalasia by a doctor at Stanford who referred me to two surgeons which I never followed up with.  I wanted to get a second diagnostics and find out if there were other things I could do besides surgery.  I had to wait almost 8 months for an appointment with another doctor in San Francisco (SF).  A year later, the SF doctor confirmed that surgery or ballooning were my only choices.  

    After talking to the SF surgeons, I really liked my Heller Myotomy doctor.  I did not feel comfortable with the POEM doctor.  I was already very confused on which procedure to get.  I made a last minute decision to go with this POEM doctor who had only done the surgery a handful of times however I found out he was not covered under my insurance so I ended up getting Heller.  

    The biggest regret:  I wish I had followed up with the Stanford surgeons when I was first referred to them a year before.  It turns out one of the surgeons was a POEM surgeon.  I sent him an email three days before my surgery, and he replied on my surgery day stating he did over 60 POEMs.  Plus he was fully covered under my insurance.  I should have emailed him earlier and consulted with him also.  I don't know why I did not think of that.   

    I am hoping that I can still get POEM in the future.  I don't see why that would not be possible after getting Heller.  In the meantime, my plan is to live with this.

    Sorry about the long email.  My advice - try to meet with various surgeons before making a decision.  In summary, I love my Heller Myotomy surgeon and did not like the POEM surgeon I talked to.  It did not occur to me to find other POEM surgeons near by.   

    -Sonia

    • ChokingVictim
      ChokingVictim s091a

      Posted

      I didnt read all the posts and replied with slightly incorrect Info when it came to ur outcome. Apologies for the struggle.

      Achalasia makes me cry. Sorry for ur trouble with it all and I can say I understand, truely.

      #AchalasiaSucks

    • Super_Dave
      Super_Dave s091a

      Posted

      Hi Sonia

      I had a failed LHM and suffered for five years.  Last year I had Poem surgey at Stanford and I am so happy to say it was a complete success.  You need to go back to Stanford.

    • emusedone
      emusedone Super_Dave

      Posted

      Hi there, I am from Oregon and have suffering with Achalasia for awhile now. I just got accepted to Stanford. I’ll be traveling there so I’m nervous about everything. Nervous because I had some not so great results in Oregon. Since I also have lupus, I was referred to Stanford because of their expertise with the different surgeries. I saw that you had your POEM there. How are you doing now? Did you live very far from their clinic? Thank you in advance!
  • amy56547
    amy56547 s091a

    Posted

    Hi Sonia.  I'm so sorry to hear that the surgery did not go well for you.  I appreciate you telling me your story.  I don't know if POEM will help with the spasms either but I'll check into it.  My problem is that here in the U.S. I have a health plan (Kaiser) that only provides the Heller Myotomy with Fundoplication, not POEM.  So, I guess I'd have to pay out of pocket!  I'm also concerned about whether or not I've waited too long while I'm gathering information for the surgery to be successful.  Did your doctor say anything about that or is that unrelated?   

    For some reason, the doctors and surgeon I've spoken to don't seem to recognize the spasms I'm descibing as part of Acalasia or to be able to tell my what could occur regarding them after surgery.  My spasms come on when I'm not eating, usually in the mornings.  Are yours the same kind of spasms?  I don't know if you've already tried this, but now when a spasm comes on I gulp water until they reside and they do quickly!  

    I appreicate your sharing anything that could help with me and my heart goes out to you.  Amy

    • s091a
      s091a amy56547

      Posted

      Hi Amy,

      I am located in California.  I just changed my insurance to Kaiser.  I was seeing a esophagus motility specialist at Stanford and then went CPMC for a second opinion.  I have been told if Kaiser does not have the right treatment for you, they will pay for treatment outside.  

      As for being diagnosed with Acalasia, I had a pressure test while doing dry swallows and it showed that the muscles in my esophagus don't work.  The food has to slide down instead of the muscles helping the food go down.  This makes since why I have difficult swallowing at times.  It is worst when I am eating a sandwiche.  Note - I had spasms in the esophagus for years before the difficult swallowing started to happen however the difficult swallowing is what helped to make the final determination that I have Acalasia.  Before I was diagnosed with Acalasia, I was seeing the Stanford specialist for my spasms but none of the medications she gave me worked.  Back then, the pressure test did show that my muscles in my esophagus did not work properly.  

      Spasms - When I first get a feeling that a spasms is about to start or if the spasm just started, drinking water right way helps.  By drinking water, sometimes the spasm just goes away.  Once in a while, the spasms start and there is nothing I can do to make it go away.  

      A couple of weeks ago, the spasms started at 2pm in the middle of a meeting at work, and lasted until 5am.  There were times it was unbearable.  Sometimes, I take tons of valium and just get myself to sleep.  

      I remember a time when I used to get spasms in the morning as though I pulled a muscle by moving the wrong way when I was waking up.  I have had spasms when all I ate was a banana or vanialla yogurt.  There is no rhyme or reason for my spasms.  They just happen.  I quit drinking coffee years ago but my doctor said that food is not what is causing them.  

      It is really frustrating not knowing what to do.  I had so much hope when I first got a botox shot in my esphogus but that did not work.  I had hope when I got the surgery - that did not work either.  I am sure something will work one day but for now, I stopped eating spicy food and drinking coffee.

      Sorry for the rambling nature of this reply.  I hope I answered some questions.  

      -Sonia 

    • Cowgirluc
      Cowgirluc amy56547

      Posted

      So sorry on your insurance .and your doctor not recognizing the spams. Go to OSHU in Portland Oregon. The gastro surgeons up there know a lot about achalaisa .

      I also got spams as I got up and moved wrong I didnt need food to set mine off . I understand. I suffered 3yrs to get where I am now. I just had surgery the robotic heller for thing they did a partial didnt want to mess with edphogus to much . They had told me that I would still have spams cause of type 3 and what they was doing was releasing the spincher so food could move through better and not stay in esphogus. You must stay on the special diet. If you can't you'll mess your self up. It takes will power also. Any more question fill free to ask . now its nap time 😄

    • Cowgirluc
      Cowgirluc s091a

      Posted

      Try contacting OSHU gastro clinic. They found mine and have treated several cases from all over Dr Dolan . is his name. I also had bad spams and still getting small ones . I am disabled due to bad back injury and I use cannabis for my spams and sleep also eating issues.
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