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16 year old with new diagnosis of Type II Achalasia, what next?

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linda76807
linda76807

We'd like to know what the treatment options are; is it usual to go for surgery as a first option? I know that some treatments can limit the success of later treatments if needed, so should we rule them out? We understand that it is something to do with nerve endings dying, so why couldn't this be confirmed by the biopsies and is there any treatment to delay or prevent further decline? Also, we understand there is stem cell research being carried out, are any of the proposed treatment options likely to prevent successful stem cell treatment if it should become available in his lifetime? We probably need to put these to a specialist - do we have a right to one? can we insist on one, or should we try to pay for a private consultation to get advice?

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3 Replies

  • paulsz
    paulsz linda76807

    Edited

    achalasia-action.org is a useful website with useful info and will answer most of your questions.

    There are options available, balloon dilatation, botox injection, POEM, Hellers myotomy but stem cell is a while away yet... Your GP should be able to refer you to a specialist who should talk you through these. Private surgeons also work for the NHS so you will get same quality of care but paying for it gets it quicker with some nice perks. it's a personal choice depending on your means. The best diagnostic tool for achalasia is the barium swallow but research is underway on others.

    Personally after many years before diagnosis and much damage done I had 4 unsuccessful dilitations (1 of which was private with the same surgeon I was with on nhs) and a finally hellers myotomy with fundoplication that saved my life in 1998. thank you NHS Leeds General Infirmary. I've lead a productive life, all be it not easy, but who's is, and I've had to learn new skills and make many changes and adjustments along the way but I'm a stronger better person for it.

    I hope you have made some progress by now, let me know if I can answer any other questions 😃

    • vergenie10682
      vergenie10682 paulsz

      Posted

      Hi paulsz, you had your HM almost 24 years ago, and since then just control every year? Did you have any other procedure after that?

  • vergenie10682
    vergenie10682 linda76807

    Posted

    Hi Linda, my daugther is now 19 yo and had a Heller myotomy in 2018. She had first a balloon dilatation in 2017 (less invasive) but it didn't work. In her case her her LES (lower esophaegal sphincter) was hypotensive and we were told that the balloon works better with Hypertensive LES. After that and being her so young we looked for a more definitive solution and that is what doctors told us too. So that is why she had a HM. Since then she has been much better though she has to have omeaprazol to control the Acid reflux (even having a Nissen fundiplicature). Of course nothing goes back to what it used to be but her life quality has improved a lot. She had an upper GI study just two weeks ago and the esophagus emptied so quickly that they couldn't get the time lapse images, and that is a good thing!

    Of course there is POEM too, but we were afraid GERD could be a great issue in that case. But of course every body is different. We went for the option we thought was more proven.

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