Life after unsuccessful myotomy for my 7 year old

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My son was diagnosed with achalasia last year and had the myotomy in May 2013. Initially, everything was amazing and his symptoms were gone! However, after a few weeks he started to cough at night, become raspy (sounding like Darth Vader again), and eventually vomit the i digested food that sat in his oesophagus. He copes well with his symptoms and I guess at 7, he is used to it, but he is now back to square one after another barium swallow this week.  As I am starting to read more and more, I am worrying about complications down the line for him and damage that can further occur. Does anyone have any top tips or advice that can help to relieve his inconvenience? I am sure some foods are more of a trigger than others, such as bread, but it can be quite difficult convincing him to follow a different diet, simply to avoid the build up and then sick!

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  • Posted

    I think you have hit the nail on the head. Avoid foods that prove too difficult to cope with. From my research into this condition and operation (husband suffered long drawn out symptoms and diagnosis) there does appear to be foods that may still be a challenge to deal with. Bread is often problematic.
    • Posted

      . . . . Even post surgery. Whilst I appreciate some sugrey is more successful than others, we have been warned that a Myotomy is no magic bullet and often the person remains gravity fed. Therefore it is sensible to find and avoid triggers and problem foods still. Easier said than done at 7 bless him. I do hope things improve for him. x
  • Posted

    There is an opinion amongst surgeons that if you are treated successfully at a young age it makes a tremendous difference.

    I think that food that gives problems are probably divided into those where the texture makes it a problem (eg bread, but perhaps not toast?;  fibrous steak?), and those where spiciness, acidity or some other aspect of the taste might provoke a reaction.

    Keeping a food diary can be a really helpful thing, bearing in mind that the reaction can be a few minutes after eating, so eating 'little and often' might be helpful?

    I wonder what causes the raspiness?   Is it the stomach acid coming up?   In which case there would be medication that would help.   It can affect things like tooth enamel in the long run.

    There is a set of notes from the meeting we held last year on the internet (Oesophageal Patients Association - Oesophagus - Achalasia) and we are planning another one for 18 December withthe hope that a dietician might be able to attend.

  • Posted

    Hi Chillybean,

    I am sorry to hear that myotomy did not help you much. Actually I think it did it, because today also with problems related you can eat and feed your-self, so you not risk to starve. I had a similar problem after myotomy 3 years ago. One way to solve the night reflux is to sleep on a wedge high (in one side, of course) form 15 to 25cm. ( you can find it easily on line in website where they selling clinical products). My wedge is 25cm, because 20 cm wasn't enough to stop night reflux. I also tried with gaviscon, did not work. Acid reflux happen especially if you eat late and go to bed before digestion finished, or if you eat something which you're not able to easily digest . Actually in this case the best way to avoid night troubles is to pull it out of stomach at the first sign of "stone sensation". Unfortunately if you use regularly antacid tablets or sorts of medicaments called "proton pump inhibitors" ( omeprazole, lansoprazole and similar..) your digestion is much slower because acid in your stomach is part neutralized, and could happen that foods which you use to digest easily before, now using these medicines you are not able to digest anymore. It is normal.

    I understand your concern about complications, I was the same and like you I read about a lot. Indeed you are right, because if you leave the acid across the sphincter and standing inside oesophagus along the night you could face more worst problem than just cough and hoarseness. Because of acid oesaophagus wall will get very painful inflammation which takes days to melt away, acid also will burn your vocal chords, and worst of all some stomach fluid can leak into lungs trigger breast infections and polmonary diseases.

    If you would like follow my tips, is better if you avoid for dinner all that kind of food which rise up acid level and are slow to digest, then start to sleep on a wedge. I did and finally sleep well at night. Actually before I stand up in the morning, I pull off the wedge and stay 10 minutes without pillow completely flat on the mattress,better with the window open, this will give a bit of  oxigen to the blood in my head, because of course, with position always highter than stomach the heart needs to do more work to pump blood upper.

    Hope my experience will help you.

    ​Good luck!

  • Posted

    Hello Chellybean,

    So sorry to hear your son having problems after the procedure.

    I can tell you what the doctor that helped my son said.

    This procedure is one that will work in the sense that it doesn't change. What they removed is gone for good and will stay this way. Another factor to consider is the competency of the doctors.

    Not trying to say the doctor that worked on your son didn't do a good job. That's not my intent, but it is one factor to at least consider if your sons symptoms are bad again. perhaps the monometry test could show if there's some sort of problem again, I don't know.

    The other is this disorder has a mind of its own. Meaning it affects people differently. I've read people in here had this for years. After watching my son suffer with this for about 6 months, the lat three being dreadfull, I can't imagine anyone having what my son had for years and survive that.

    I would seek medical advice once more. Just to make sure what was done was done corectly, and that his motility issue was under control to a large extent.

    Hope your son gets better and let us know what's going on please.

    All information is greatly appreciated.

    Thank you,

  • Posted

    I just recentally (3 monthes ago) had the heller myotomy surgery and i once again feel that the food becomes a little stuck. Still its a lot better than how I was and I dont vomit or cough at night anymore but you feel like you went through all of the tests and surgery for nothing and after all that you are back to step one. Personally age doesnt help either. Take it from me, im 13 and it really is terrible to have this...
    • Posted

      I can completely understand how frustrated you feel, and you are quite right about the age issue not being relevant.   Knowing it would have been even worse if you had not had the surgery is not much consolation.

      It might be worth having your case reviewed by the surgeon in case there is a variation that could be undertaken.   Perhaps the wrap might have been done too tightly or something like that perhaps?   Perhaps there are things that might help on the issue of some form of relaxation of the nerve system?    

      I am not holding out anything specific - but just trying to think of something that might possibly help, or at least to understand better why it has started to go backwards again.

    • Posted

      Thank you. My surgeon has suggested us to wait as I was recentally sick with the flu and if it didnt get better to do a barium swallow. If the test shows up possitive for achalasia again he suggested a dialation. Since I havent gotten better I will be doing the barium swallow

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