Hi, my name is wamda! Has anyone else had a dilation procedure for achalasia and motility disorder? — Scope | Disability forum
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Hi, my name is wamda! Has anyone else had a dilation procedure for achalasia and motility disorder?

wamda
wamda Member Posts: 7 Listener
I was recently diagnosed with achalasia and motility disorder of the esophagus. I will be having dilation proceedure in a few weeks and I am really anxious about it. Has anyone else had it?

Comments

  • janer1967
    janer1967 Member Posts: 16,322 Disability Gamechanger
    Hi and welcome to the community 

    Sorry you are feeling anxious about your treatment 

    I don't know anything about this but I hope others will 

    Just wanted to say hi 

    Feel free to join in or ask any questions 
  • Tori_Scope
    Tori_Scope Posts: 9,507 Scope online community team
    Welcome to the community @wamda :) Thanks for joining. Are you having a good weekend? 

    It's understandable that you'd be feeling a bit anxious about having a new procedure. It's not something I have experience of, but I've renamed your post slightly and moved it into a different category so that other members will be able to find it more easily. 

    Have you been able to speak to your doctor about what you should expect, and how you can prepare? I did find some information on Verywell Health, but I'd definitely advise you to speak to your doctor if possible, as they'll be best placed to talk things through with you. Sometimes it's the element of the unknown that can be most anxiety-provoking- is that what you're experiencing at all? 
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  • wamda
    wamda Member Posts: 7 Listener
    Yes I have spoken to my consultant and I know exactly what is going to happen. I'm just feeling fearful and was hoping there was someone here who had experienced the proceedure and could share any thoughts on it. I haven't eaten solid food for almost three months and feel anxious about trying to after the proceedure too. 
  • Ross_Scope
    Ross_Scope Posts: 7,436 Scope online community team
    Hello @wamda

    Welcome to the community, good to see you join.

    I have no experience of this myself but I hope others do so that they can share their insight with you. I wish you all the best for the procedure, I'm sure everything will go well and do let us know how you get on :) 
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  • wamda
    wamda Member Posts: 7 Listener
    Hi folks. I went in for the procedure a week ago and it didn't happen as there was no bed for me for the night. I was so upset about it as I was really scared . I have to wait a few weeks now. Meanwhile I'm having a terrible flare up and have so much pain in my chest. I haven't been out for 5 days as I have no energy. I'm so tired of this. 
    Was nice to receive replys from my initial post. 

    Thank you ?
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hi @wamda - I'm so sorry your procedure didn't go ahead after you must have geared yourself up for it too. I do hope your wait is not too long. It must be draining having a flare up with chest pain....I hope that settles down soon. My best wishes. :)
  • saveroflives
    saveroflives Member Posts: 1 Listener
    Hi wamda, I've not had a dilatation as such but did have a laprascopic (keyhole)cardiomyotomy 20 years ago to permanently open the muscle at the end of the oesophagus into the stomach to allow food to pass through easier. It made a big difference but I do sometimes get terrible heartburn/acid reflux. 
    Hope you get your procedure soon. Gx 
  • Teddybear12
    Teddybear12 Member, Community Co-Production Group Posts: 8,038 Disability Gamechanger
    Hi @wanda Have you had any news about another date for your procedure ? Take Care.
  • wamda
    wamda Member Posts: 7 Listener
    I've had the procedure two weeks ago. I was poorly for the first week but it's calmed now and I am managing to eat some solid foods. 
  • Teddybear12
    Teddybear12 Member, Community Co-Production Group Posts: 8,038 Disability Gamechanger
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Great to hear from you again @wamda - pleased to read you're hopefully a bit better now, & tolerating some solid food. Hoping things continue to improve for you. :)
  • Sylvi
    Sylvi Member Posts: 3 Listener
    Hi Wanda. My name is Sylvi. I am so happy that you have had your procedure. I know that you will feel so much better and free of pain now. I had undiagnosed achelsia in my twenties and suffered for nearly thirty years until I found a specialist who diagnosed correctly that I needed a dilation. I was under 6stone at the time. It is nearly twenty years now since then and although I still get some pain if I don't  monitor my food correctly my life is good now. I am 81 years old and  wished I had been diagnosed earlier. I expect that you will have checkups, annually I believe, but as more is known about the condition more attention is given to patients. May I wish you all the very best in your recovery, thinking of you. 
  • Tori_Scope
    Tori_Scope Posts: 9,507 Scope online community team
    Well done for getting through it @wamda, and best wishes for your recovery :)

    Thanks for sharing your experiences @Sylvi! And welcome to the community. I'm sorry that it took so long for you to get the right diagnosis, but I'm glad that life is good for you now :) 
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  • wamda
    wamda Member Posts: 7 Listener
    Hi Sylvi Thankyou for your comment. I am by no means pain free but I am able to eat soft foods as apposed to liquids only previously. Sorry you suffered for so long and happy that you now have an almost normal life. 
    I feel I have a long way to go yet but I'm doing my best each day. Slowly gaining weight and strength. 
    Wish you well for the future. ?
  • Sylvi
    Sylvi Member Posts: 3 Listener
    Hi Wanda  Thanks for replying to me. I am sorry that you are still having some pain and I do hope that like me you will feel loads better soon.  Twenty years ago I attended a London Hospital where they were doing research on achelasia and had some of the first esophagal tests needed to try the dilation process.  I like to think I was able to help other achelasia sufferers. I do wish you all the best for your recovery and try not to worry as stress builds acid and that is painful to nerve ends. Thinking of you. Sylvi
  • wamda
    wamda Member Posts: 7 Listener
    Wow Sylvi that's incredible you're so brave! A true achalasia angel ?
  • Sylvi
    Sylvi Member Posts: 3 Listener
    No Wanda, no angel, just desperate at the time. I do hope that as the days go by after your dilation you will feel loads better.  I still get pain at times but I am still here which was doubtful twenty years ago. If it helps to chat to someone who knows how you feel please just message me. Take care. Thinking of you. sylvi
  • ben1982
    ben1982 Member Posts: 5 Listener
    Hi, hope you are well. I had a couple of these just over 20 years ago. I found them to be quite straight forward and nothing to get anxious about. I hope you get a positive result from the procedure, non actually worked out for me as I had to go for key hole surgery later to remove the muscle from my gullet which did give me relief for around 10 years but has since returned and now suffer from frequent heartburn. 
    Achalasia is something that I have found I’ve just had to discover personally how best to cope with in regards to what I ingest. 

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