1. Community
  2. Gut, bowel and stomach
  3. Oesophageal Achalasia and Spasm

Can anybody offer me some advice?

Posted , 7 users are following.

Jardin
Jardin

After nine years + of heartburn, painful swallowing, regurgitation, choking etc I was recently diagnosed with type 2 achalasia. I was prescribed domperidone & nefedipine which I later discovered was not very helpful as apparently they have contadictory effects. I have now stopped both. I found nefedipine had me running to the lou all night although I did not realise this until I stopped it. It also lowered my blood pressure so that I often felt quite giddy.

I have been offered balloon treatment but have put this off as I was knocked down by a car a year ago & have had major surgery. I feel I can't face any more pain etc.

My achalasi is getting worse & I feel I will not be able to eat at all soon. It is very paiful to eat & the food stacks up until I feel panicky that I will choke. I understand from the consultant that the ballon treatment will help with the swallowing but not with the regurgitation & heartburn. Regurgitation is a big problem as I wake choking & sometimes my trachea goes into spasm which means I cannot breath at all.

Has anybody had the ballon treatment successfully? Do the effects last?

I feel very depressed about the whole business .

0 likes, 22 replies

22 Replies

Next
  • janski
    janski Jardin

    Posted

    Hi there,

     

    Try to thnk positive and not get depressed, I always think there are people out there wth far worse things!

    I have been diagnosed for about 8 years now, and I quickly had a balloon dilatation. I am still relatively ok, and can manage to eat pretty well most of the time. I do cough again now at night but after 8 years i dont feel that is too bad, I am part of a meetup group for Achalasia and we meet in London every month or so if that interests you.

    I hope you get relief soon as there is lots of help out there for us Achalasians!

     

    • Jardin
      Jardin janski

      Posted

      Hi

      Thanks for your positive reply, it's encouraging

  • Arif57
    Arif57 Jardin

    Posted

    Have you not been asked to consider surgery? I had a myotomy in May last year and life has changed completely! It is not painful and neither is the recovery. I can completely relate to your current state as I was unable to eat and had severe swallowing problems. I got the impression from your message that surgery is not currently possible. Why? 
    • Jardin
      Jardin Arif57

      Posted

      I have only recently been  diagnosed after suffering for about 10 years. I guess they want to try the least invasive treatment first & if that doesn't work go on to surgery. I am certainly in no hurry for surgery if the ballon endoscopy works.
  • jody76982
    jody76982 Jardin

    Posted

    I also have type 2.  I had a myotomy and things are much better - I still have to take tables and there has been a major life stye change - stick with easy to swallow foods - rice pudding is great - and consider taking nutrient rich food drink supplements.  Swallow small amounts at a time, and wait for it to go down - never gulp.  I avoid things like chips and bread, but can eat these if I eat small mouthfulls at a time.  Soup is also very good, as is pasta if it has lots of sauce on it - the surgery really has changed my life although it was very painful
    • Jardin
      Jardin jody76982

      Posted

      Thanks for your helpful reply Jody76982. I am not sure what a myotomy is but will google it. I imagine it's surgery. I have  initially been offered a dilation which is done with an endoscope.

       

    • jody76982
      jody76982 Jardin

      Posted

      It is surgery and mine had 2 aspects - part of the oesophegius was removed to make swalling easier, then the sphincter is permanenty opened by wrapping it around the stomach.  It was painful, but it really is so much better now.  I hear a lot of people have had success with dilation.  The problem is that due to its rarity, there are only a few specailists in the country but you shoudl be asked to be referred to one.
    • AlanJM
      AlanJM jody76982

      Posted

      The surgery is to do with adjusting the valve at the bottom of the oesophagus and the top of the stomach so that it no longer clamps shut.   I think it involves cutting the muscles so that it is much more relaxed and lets food pass through OK.   The 'wrap' involves stapling / fixing part of the top of the stomach around the bottom of the oesophagus to ceate a natural valve to prevent the stoamch acid rising (reflux).   There are variations in relation to how far round the oesophagus this is done.

      These operations are done at centres for Upper GI (upper gastro-intestinal tract) surgery and ot does indeed need a specialist to do it.

    • Jardin
      Jardin jody76982

      Posted

      Hi Jody76982

      Thanks for the information. It is not something I would have done unless I really had to. I will try dilation first & hope it improves things. I am glad it has worked well for you. If I do ever have to have the surgery I will be sure to ask to be referred to a specialist as I din't want a botched job leading to more problems

      Thanks

    • Jardin
      Jardin AlanJM

      Posted

      Thanks OPA_AlanM

      I really appreciate you taking the time to explain the op to me. It is not something I will rush into as it sounds horrid. It would be a last resort I think

       

    • AlanJM
      AlanJM Jardin

      Posted

      It certainly is not a thing that you would want to do unless you had to, but you also have to think that the longer you leave things, the more your oesophagus gets slacker, and if it ends up getting baggy, this in itself can close off options for getting it properly resolved in the longer term.   So you are quite right to find a good specialist and be guided by their advice.
    • Jardin
      Jardin AlanJM

      Posted

      Thanks. This is obvioulsy something I will have to think seriously about. I have already had this , undiagnoed for about 10 years & it is getting worse

       

  • nithyam
    nithyam Jardin

    Posted

    Hi jardin,

    I'm in the same situation like you. I have been suffering for past one year and diagonised with Achalasia type 2 , six months back. I have severe burning sensation in my stomach , burps which brings my salaiva to my mouth which is stagnated in my esophagus. Apart from this I also experience night time chest pain. I'm on esomeprasol 40 mg twice a day. I have undergone a balloon dialatation (30 mm)which was insufficient, my doctor is advising me to go for another dialation(35 mm).I'm planning for it now, I read many articals dilatation can be compared with surgery and the results are excellent. And I say ,

    1.Take a PPI it helps in heartburn after consulting with your Dr

    2.Elevate the head rest of your bed to 6 inches, it helps a lot in back flow of gastric contents.

    3.Have your food 3 hours before sleep, don't drink water before 2 hours . it really helps to have a good night sleep.

    4. Avoid spicy foods especially for dinner.

    5 . plan for the treatment asap, balloon dialatation is a also a good option i read many people were treated successfully. It is a very simple procedure same like your endoscopy.

    • Jardin
      Jardin nithyam

      Posted

      Hi Nithyam

      Thanks for your reply. I am also taking 40mg Esomeprazole twicw a day but still get horrendous heartburn sometimes. I do all the things you suggest and they do help.

      I have been putting off having the dilatation but your comments reassure me although I don't think they help with the heartburn or with the regurgitation. I will have to have it done though as eating is now so difficult & painful

      Cheers

  • AlanJM
    AlanJM Jardin

    Posted

    There is a page on Achalsia on the website of the Oesophageal Patients Association under Oesoaphagus.

    Also google Meet Up groups for Achalasia.

    The balloon stretch will relieve the toghtness of the valve between the oesoaphagus and the stomach.   I know how you feel about surgery, but this would be done endoscopically - it is like a miniature tube inserted down your throat with a miniature camera attached.   I had had three operations and had been in hospital for 10 weeks so I was worried, but I had a sedative and did not feel a thing.  

    It is true that having a stretch may not be a permanent solution for a number of people;  and that the looser the sphincter valve between oesopahgus and stomach the more you have suffer from reflux, but the effects of stale food fermenting in the bottom of your oesophagus will be a worse problem.

    So my advice would be to follow the guidance from your doctors and have the stretch, but with a realistic view that you may have to retunr after a few months for a more permanent solution.   The sooner you get something done about it, the better.

    • Jardin
      Jardin AlanJM

      Posted

      Thanks very much AlanM your reply was very helpful.
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.