I have had dysphagia for a number of years. It has now been diagnosed as achalasia.

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I have lost approx. 60lbs. this year. No pain but a lot of not being able to swallow, causing regurgitation. I had a dilation in May 2019 with no help. Being a poor surgical risk, Botox has been recommended. I have been investigating POEM surgery. I would appreciate any suggestions or comments about either course of action.

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6 Replies

  • Posted

    Hello. It took me 7 yrs to find a Dr that knew I had Achalashia . Have they told you which type? I'm type 3. Anyway, first I had poem. It helped for a very short period of time. After you have that done there's nothing to stop the acid from coming back up. Mine was terrible afterwards. Every morning I would wake up and could barely talk. Terrible burning, had to drink a quart of milk to be able to talk and soothe the acid just a little. I was forced to have a toupee fundoplication done which is pulling up your stomach wall around your esophagus 280° to block the acid. So now I cut my food into very small pieces, chew the heck out of every bite and try to stay away from foods that cause extreme acid. I do not take any meds and since my fundoplication its been under control. My only issue now is that my esophagus has stretched a little so it has to be watched so as not to become a 2nd stomach and let food get trapped and decay there. Achalashia is a very complex disease for drs to figure out. Not many really know about it. I could tell you stories that would make your hair stand up. lol.

  • Posted

    Dilation didn't help me either. I would be careful with botox but that's just my opinion. I wrote you a few minutes ago and just wanted to tell you if you want to pick my brain I'll give you my contsct info, just let me know. Wish you luck. Tough choices ahead.

  • Posted

    First of all you have to look after your nutrition levels and consider liquid supplements and food like soup. You need to keep up your strength regardless of anything else.

    Some people do get by with regular dilatations or botox but it depends on severity of symptoms, and it is true that relief can be temporary.

    i think your comment about surgical risk is very important, and one option to consider is whether this risk can be reduced by improving your fitness, difficult though this may be.

    POEM does not in itself re-create the valve function of the lower oesophageal sphincter to limit stomach acid rising; it is the fundoplication that does that.

    POEM is an alternative to other surgery in cutting the muscles that keep the valve clamped shut.

    There is a booklet called A Patients Guide to Achalasia that can be downloaded from the website of the Achalasia Action charity who have a meeting in London on 17 September.

  • Posted


    No Eureka here, just an empathetic story.

    I've had achalasia, off and on, for the last 45 years.

    Reduced to eating custard with biscuits when I was 15, I went to hospital on my own (you could then) and only getting my mother's consent for them to slit me open -sternum to navel. I still remember going home and eating sausages, beans and chips - in company and no problem.

    You know how it is when you look back, after living with something for ages, and can't recall exactly the state I was in in between the years, but I only got bad again 35 years later in 2008.

    Went through medication (no good), then three balloon procedures (no good), with the last being the largest one they had. I was living on a small island then, pop. 100k, so think it was all a bit You Tube for them.

    Anyway, now gotten worse, so back on mainland UK and about to go and demand some sharp tools.

    Horrible thing to have.

  • Posted

    Thank all of you for your replies. It helps knowing others are worse off than I am. I have only had the bad problems for about 2 years, but it has been worsening quickly about the last 6 months. It is helping being able to communicate with others with the same disease.

  • Posted

    sorry about the problem. there is no one answer. You may have to see what works best for you. i have avoided all forms of surgery because of the possible more severe symptoms after the surgery of reflux.

    I manage my condition through various dietary measures, muscle relaxants such as small dose of diazepam and phenergan, sodium bicarbonate to create burping so air expelled from the stomach allows food to pass through sphincter. Avoid meat and bread if possible or have very small amounts. Use protein shakes including eggs, berries, bananas in them to keep up protein and carbs snd take multi vitamins daily. This regime works most of the time for me but may not for you. AS I said there are various firms of achalasia and people react differently. My aporoach is not a panacea but it certainly helps me. I also workout in a gym and this approach keeps me as healthy as possible.

    Hope this helps. Experiment with some or all elements and try other things which uou may find helpful.

    Good luck

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