Achalasia Advice

Posted , 7 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I am 13 years old and I have just recently been diagnosed with achalasia and my doctor gave me 4 options. Botox, dialation, Heller Myotomy, and a new prosedure called POEM. I am unsure about which procidure I am going to do and I really need advice on which procedure (with reasons please) and on how I can handle the problem because it is becoming difficult to handle and as of right now I am taking Nefidipine and it helps a lot but it is not a permenent solution. I am leaning towards POEM because it is low risk and is simple. Please give me advice!!!

1 like, 19 replies

Report

19 Replies

Next
  • Posted

    Hi Sazo,

    I have had the Botox twice and each time the Botox has lasted me a full year so it has been like magic but I know it is not a long term solution I am just putting off the inevitable.  Also I was advised that the Botox may only last weeks or a couple of months but I was lucky.  They will not allow me a third lot of Botox.  I am in a similar situation as I also need to make a decision in the next few weeks!  Good luck, Tracy

    Report
    • Posted

      I was very interested in the botox procedure and since it is effective i might consider doing that but my doctor says that I might get scar tissue. What does your doctor say about that???
      Report
    • Posted

      Yes the consultant explained about the scar tissue.  He said I might get scar tissue but it should not affect the operation later down the line, nor dialation if I opt for that.  When I had the botox I went into hospital in the morning.  I had an anaesthetic when it was my turn.  The botox did not kick in straight away it took until the next day.  I had lunch at the hospital and then was allowed home.  The next day I was a little fed up as I thought the Botox was not going to work but towards bed time I had a drink and it felt different very different!  I could actually feel the drink dropping into the stomach weird but a good feeling and from then on I could eat with nothing coming back!!  I gained a lot of weight 15kgs!!!  Within a few weeks I found breakfast stayed down and much more of my lunch but by evening dinner often does not stay but still it is much better than it was in the past.  I can tell the Botox has once again worn off now almost completely as the weight loss has started as I start from breakfast bringing the food back.  At present I am eating cakes biscuits and choc to keep the calories up as I could hardly think when I was at my worst I had lost 4 and a half stone.  The positives for me are that I am not ill.  I do not feel sick.  I love food.  I just neeed to be near a toilet at meal times!
      Report
    • Posted

      Wow! Something that I find interesting is that one of the main symptoms of achalasia is vomiting but i have never vomited by achalasia. Would you know why? Also my doctor advised me against botox and dialation because of the scar tissue and he says that it will be hard to opperate and says that I might have internal bleeding. Is that true?
      Report
    • Posted

      Gosh internal bleeding??? I hope not!  I will ask my consultant I see him soon and I then have to also make a decision.  What then are your signs of Achalasia I just assumed all people with achalasia brought their food back as it could not get through into the stomach.  I am not sick as in vomit sick the food I have just comes back it like gets stuck so it is tricky if I go out for a meal I just have to always sit near to the toilets and feel hungry a lot of the time and I spend a lot of money on food!  
      Report
    • Posted

      It started almost 2 years ago with frequent chest pains and now I have a feeling of food getting stuck (I now drink carbonated drinks for that) and if food is stuck to long I 'salivate' really bad (feels like you will vomit but you know you won't) and I have lost almost 20 pounds. Do you have any of the same symptoms???
      Report
  • Posted

    Hi

    This is a hell of a thing for a 13 years old to be thinking about and I would like to think that your parent(s) will help you with that decision. The standard operation is a laparascopic (five or six small incisions in your abdomen) Heller myotomy and in addition a proceedure called a fundoplication where the stomach is folded around the base of the food pipe to make a new valve. If they dont do this part of the op, its not to say you will have problems but quite possibly in the future you may well suffer from a degree of acid reflux where the contents of your stomach can flow into your foodpipe when you are laying down or asleep. POEM op is similar to the Heler myotomy except it does not involve operating from the outside and the surgeon has greater scope for dividing the muscles of the cardia. But no fundoplication op can be done and once they have effectively negated your valve they need to make a new one. So both ops have positive and negatives. However I think it more likely at your gae that they will not do POEM but a laparascopic op. Its simply because they can be more controleed and at your age it may be a problem using and andoscope for a POEM operation.

    Report
    • Posted

      Thank you so much! Also the surgeon i am seeing has given me the oppertunity to do Heller Myotomy and POEM because he is trained in both of the surgeries.
      Report
  • Posted

    I think your question is a really good one, but in truth the only person who can really give you the best assessment is a specialist doctor who has examined you, looked at the various test results, and answers the question 'What would you advise if I were your son?'.     The good thing is that age is on your side.   You may respond better than most others who use this site because of age.  

    You are right to be thinking about what is best for you in the long term.

    So, the questions might also be:

    What procedure gives me the best chance of getting a good quality, long term solution first time round?  

    What procedure gives me the best chance of best quality of life long term without swallowing and reflux problems?

    What procedure keeps options open for the future should it not work properly?

    Botox and dilatation are probably easiest but there is a risk that they may not last long.   But would the doctor think that it is feasible that your nerve system could get 're-trained' for the long term by one of these?

    The difference between a myotomy and POEM is that POEM cuts the muscles within the lining of the lower oesophageal sphincter.   I suppose that both might increase the chances of reflux, but it is a question of getting the right balance.

    I have a grandson your age, and if it were him, I would advise him to make sure that he was going to a recognised Upper GI centre of excellence where they had a lot of experience.   I would be interested in the percentage chances of 'getting away with' botox or a dilatation (which only the surgeon can give you) but would definitely not be keen on risking repeats of the same 'half measure'.  I would be interested in how many POEM procedures they have done at the centre because there is quite a long learning curve for the surgeons to be able to do it well, and I would be keen not to be carried along with 'new procedure enthusiasm'.

    It is not as clearcut as an engineering problem, because our bodies are not like car components, so things might be grey rather than black and white, but I am quite sure that things will improve for you whichever you choose - the issue is for how long!

     

    Report
    • Posted

      My doctor never said anything about my esophogus being feasible that your nerve system could get 're-trained' for the long term by one of these procedures. What exactly does that mean???
      Report
  • Posted

    I do not know enough about this!   I  was 'thinking aloud'.   

    The problem with achalasia is often that the nerves do not trigger the muscles properly for the peristalsis / motility / digestion process properly to work the system of  food being progressively moved through into the stomach.    And stress and anxiety sometimes / often makes this problem with the muscles nerves worse.

    So feasibly, perhaps, if the patient is young, and a short term solution is found, the nerves might then get trained into becoming more effective (again) because they have not been jangled for such a long period as those who have been suffering the condition for longer?

    It might be connected with the issue of precisely what happens to the nerve endings, how the nerves drive the muscles, whether the nerves have become damaged in some way, and whether any such damage might get reduced by the body's healing functions.

    I repeat that I do not know the answer, and the chances might well be that individuals are so different that one could never rely on any argument that this could happen.

       

    Report
  • Posted

    I don't think your nerves can get retrained! However, I might be wrong.

    The good news is, all of these options are reasonable and good. I personally chose to get a Heller Myotomy with Dor Fundoplication. I was considering the POEM, but the surgeon in my region does it without Fundoplication and I wanted Fundoplication to avoid GERD. I am scheduled for the surgery next week- I'll tell you how it goes. 

    Report
  • Posted

    Hi Sazo,

    I'm not sure why you would even look at those options at your age.  They all have inherint risks and side effects that might be more worse than dealing with Achalasia itself.  My doctor suggested the same options, but I always do my own research.  I looked for feedback from others that selected the different options, into medical sites such as webmd, mayoclinic, etc.  You really need to do the same so you can make an educated decission. 

    When I went back to my doctor for consultation I was very direct and prepared with this information.  These are some of the questions I asked and my final decision:

    Botox –

    Q.  I've read that Botox is temporary, from a few months to a year plus if you’re lucky, and that it deteriorates the muscle making it so you cannot have the sphincter stretched.  I also read that you are limited in the number of times you can do Botox. Is this right?

    A. Yes, it is temporary, you can only have it performed a few times, and they wouldn’t be able to stretch the sphincter after 2 Botox treatments.

    Decision – I was 45 and Botox at best would get me to 50.  I do not consider this an option.

    Stretching Sphincter –

    Q. I read that this is a temporary solution (3-6 months), doesn’t work for all patients, and there is a risk of rupturing the esophagus.  Also, there are a limited number of times you can do this and it is rather expensive.  Is this right?

    A. Yes it is temporary, doesn’t work for all patients, and it can be cost prohibitive for multiple treatments.

    Decision – I might actually do this every now and then, but again, it is temporary.

    Heller Myotomy/ POEM -

    Q.POEM is the obvious choice if I decide to have this type of surgery.  However, I’ve read feedback from others that had surgery and many are not happy with GERD, the need to take pills for GERD, or the fact they sometimes have even more issues with regurgitation from the stomach.  To me it seems like your trading off one set of symptoms for another.

    A. There are always side effects and the potential for the “cure” to not work as well as expected.  However, there currently are no other options.

    Decision – I would rather learn to live with Achalasia than have surgery at this point in my life.

    As you can tell, I decided to not go with any of their options.  Instead I’m living with Achalasia until I find it isn’t manageable.  It has been over a year, and I’m not sorry at all I made this decision.  Besides, they might come up with another option that works even better with fewer side effects in the next 10 plus years.

    I eat small portions and chew very well.  I swallow small bites and follow it with a drink of water to help prevent food getting built up in my esophagus.  I also try to keep a healthy weight, and reduce stress.  The other big thing is stop eating 4 hours before I go to sleep, and prop myself up if needed.

    Good luck with your decision.

    Report
    • Posted

      Dear Ed95295

      I understand where you are coming from and how you work out what is best for you, but the other side of the coin was given to me be a surgeon who said that people who are treated at a younger age do have better outcomes, so I think sazo's wish to get treated with the best possible outcome is valid, regardless of age.

      A lot of people his age do not have the fortune to get diagnosed  and mistakenly get treated as if they have eating disorders and so on.

      So if there is a chance of NOT having to put up with all this traumatic stuff.....

      Report
    • Posted

      I changed my mind.  I wish I had the surgery sooner.  I've read that there is no financial or medical benefits to finding a better option than HM or POEM.  Also, by delaying my esophagus is dilated/stretched which reduces the effectiveness of the surgery I just had, which was required since I couldn't swallow anything except soup.

      Report
    • Posted

      It is a dilemma isn't it!   You have a really difficult condition to put up with, but in the short term you could just carry on because the surgery sounds scary and you do not know the outcome until after you have been through it. A good surgeon is normally the source of the best advice, and they spend quite a lot of their time trying to avoid surgery for patients who do not need it (yet).   All other things being equal, the earlier things are tackled, the better.   Hope you continue to make good progress

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up