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Achalasia and Heller Myotomy - do you know experts?

Posted , 11 users are following.

sengulb
sengulb

Hi All, my 9 year old son has been diagnosed with oesophaeal Achalasia and yesterday after the endoscopy, a surgery seems to be the next step. We have been looked after a doctor in Bristol Children hospital and the paediatric surgeon who is going to do the heller Myotomy said based on the fact that this is a rare condition - especially in children - he has operated on 3 children so far and suggested that he either does the surgery with two of his paediatric colleagues for which he can potentally offer us a date in the next couple of months or the option would be to pull in a more experienced adult surgeon however the complications that come with this may delay the date to an unforseen future. there was no indication as to how long this delay might be and considering that after 2 years of chasing the doctors to get an appointment to check his condition, I was worried to miss the opportunity and agreed that he does the surgery. However knowing that it is very important to have an expert on board, I am now worrried even more that i may have done the wrong thing by 'rushing' into it and perhaps end up with complications afterwards. If anybosy has had experience and knows doctors who have performed this on children, please do let me know, I dont want my son suffer any longer and but then I dont want to cause him even more pain and longer term damage. please help! thank you!

 

0 likes, 22 replies

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  • AlanJM
    AlanJM sengulb

    Posted

    I think you are doing thre right thing by having a throuigh diagnosis and then going for the best liong term solution as soon as possible.   That way, his system won't get 'trained' into haviong the bad effects of achalsia for any longer than necessary.   It is standard for an adult surgeon to ask a paediatric surgeon to assist.   I do not think that in surgical terms it is a difficult operation as such.

    I will ask my surgical contact for advice though

    • sengulb
      sengulb AlanJM

      Posted

      Hi OPA-alanM thanks for your comment. I keep on reading some horror stories and am very cautious and anxious not to cause him any long tern problerm s by choosing the wrong treatment but yes I can see that we need to take action at once. Thanks for asking if possible I really appreciate any help possible.
  • Sjsiddiqi
    Sjsiddiqi sengulb

    Posted

    Hi

    We are now dealing with Achlasia for our 13 yr old son. I am wondering what the outcome was for your child.

    We have been researching the POEM procedure and have been in touch with a few experts in the U.K. But I want to get some first hand experience.

    Look forward to hearing from you.

    Regards

    Shahid

    • nicola_85609
      nicola_85609 Sjsiddiqi

      Posted

      Hi my 12 year old daughter was diagnosed 2 months ago and I'm trying to find out more info on the poem or hm. Have you made any decisions yet for your son and who have you spoke to? I'm finding it difficult to get any info on the internet. Thanks, nicki.

    • AlanJM
      AlanJM nicola_85609

      Posted

      You may find it helpful to download 'A Patient's guide to Achalasia' from the website of the oesophageal patinets Association (under the oesophagus and Achalasia).   there are also contact details for Amanda Ladell who may be able to put you in touch with other parents of patients of a similar age.

      ?The issue for POEM is how the procedure deals with the issue of long term reflux, whereas the Heller myotomy wraps part of the stomach around the base of the oesophagus to create a valve effect to stop stomach acid rising.   The simpe answer is that the patient is put on Omeprazole or an equivalent medication, which some can tolerate well.   I simply put this forward as something you may wish to discuss with the surgeon.

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