Achalasia symptoms returning after dilatations

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Hello,

After having been diagnosed with achalasia (type 2) in november last year, I got two dilatations in november, with three weeks in between. Those helped quite a lot, and for some months I thought the problem was at least under control. About a month ago, the symptoms such as being unable to swallow, have returned, and they grew stronger quite fast over the past weeks.

Yesterday I had an appointment with my doctor in Antwerp, and he said that given the circumstances, surgery seemed like unavoidable. After some final tests in april, I guess I'm in to the hospital for surgery somewhere in may or june.

In order to be able to prepare myself, I'd like to ask some of you what your experiences with surgery in this case are. Heller myotomy seems still to be the most common one, with Poem (I always think of Wordsworth when reading that...) being a new type of surgery, but not as common, am I right? Most important for me: what are the impacts of the surgery on the daily routine of life? How long have you been in hospital? I need to prepare some things beforehand since I am divorced and my children stay with me every other week.

Also: how long does it take after the surgey to be able to eat again? Does one loose weight with it (probably, I guess)? How does one feel the weeks after the surgery?

Thanks a lot in advance for any answer,

have a fine day,

Diederik

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7 Replies

  • Posted

    Hi Diederik,

    Obviously everyone recovers differently but I'll let you know how mine went.  35yo male, no other medical issues.  Had swallowing issues for about 6-9 months (getting progressively worse over that time) before having surgery.  In that period I dropped from 92kg to about 82kg.  Then had a Heller's Myotomy and fundoplication.

    Was hospitalised for three days.  First couple of days after surgery it's quite uncomfortable but as it's keyhole surgery you are able to move around a bit.  Limited to near liquid foods (yoghurt/ice cream etc) for the first couple of days, then get released once they've checked there are no leaks and you can swallow blended foods (smooth mash potato and mushed chicken for me).

    Very low activity for a week or two, can't pick up anything more than 5-10kg and limited to the blended foods for two weeks.  Then can progress to 'soft' foods.

    I dropped another 7kg through that process.  Took about three months to get back to full strength (I played american football and did power lifting so pushed that as quick as possible).  I think I had two weeks off work and was able to paint our newly built house in the second week - just had to take it easy and rest when required.  Then back to work (desk job) for a week before another two weeks off to lay floorboards in the house before we moved in.

    So, the first week or so you definately need a decent amount of rest but it improves pretty quickly after that.  Especially once you can eat somewhat normally again!

    I'd expect Poem to be similar for eating but shouldn't take as long to recover from physically as there are no incisions through the abdomen - unless they do a fundo with it (I haven't looked into Poem procedures much).

    Depending on how old your kids are you might want to skip/delay that week's visit as young kids can be pretty tiring.

    Good luck with it all!

    Regards,

    Spencer

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  • Posted

    I am 66 years of age and was diagnosed with Achalasia 4 years ago. I did have the operation and was in hospital for 4 days, I only had yoghurts, soups etc and on the last day had mash potato. I was not able to drive for 5 weeks and no heavy lifting, very similar to having an hysterectomy but not the pain.

    A year later I ate something without chewing to nothing and landed back in hospital and eventually told the muscles were not working properly and now have to have botox injections, I think thats age related, although I am quite fit. I was able to eat properly within a couple of weeks but I would be careful what you eat and chew it to nothing. I would recommend the operation as eating was not a problem but I think I became to complacent with what I ate. I have been told never to eat bread and I avoid cakes etc, anything that can swell up inside.

    I wish you well

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  • Posted

    Hi Diederik,

    Very sorry to hear you are having difficulties.

    The only thing I can say is that I was diagnosed at 48 and had a dilatation at 50. It was fine for a few months but the symptoms also gradually returned though not as severe as before and it was manageable - lots of water with meals. Thought I might have needed another dilatation at 52 but in conversation with the consultant just beforehand we decided against it and I'm glad I did. That was two years ago and things have stayed pretty constant.

    How bad are you symptoms these days? Same as originally?

    Kind regards

    Tom

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  • Posted

    There are a couple of patient stories on the Oesophageal Patients Association website under The Oesophagus and then Achalasia.   Depending on your individual circumstances the defree of 'wrap' that takes place can be quite an important issue - this re-creates a valve effect against reflux, but your surgeon will be able to advise you about this.

    I think you are doing the right thing by going for a more long term solution rather than simply repeating the dilatations.

     

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  • Posted

    Hi Diederik,

    I have been living with this condition now for 35years. It was diagnosed when I was 22 and I had a Heller Myotomy carried out at age 23, so Its a long time ago to remember. I believe HM is carried out as "keyhole" surgery now, as Spencer posted 4 days ago. My surgery was the max invasive type with a 50cm incision and around 50 sutures Ouch! - having thise stiches removed was sore.

    I was able to eat within 2 days of the surgery, though resticted to liquidized food, then back to mushy "normal" foods soon after. I have been on a normal diet ever since, although, for me, without any peristalsis in my esophagus swallowing is always a challenge.

    I have learned techniques of breathing during mealtimes that helps food to "go down" along with carefully timed swallows of water or other liquids. I have also learned to adapt my regular diet to foods that are easy(er) to swallow and to avoid foods that stick (see other posts on this website for discussions on this)

    Be prepared to become your own expert as you recover from the surgery. Your case is unique as we all react differently to the condition and the treatment. Don't expect the HM to "cure" you - it will make things better but the lack of perstalsis will mean that you need to think about the type of food you eat.

    My surgeon joked with me that I could never become an astronaut after the operation, as I would be forever dependant on gravity to help with swallowing.

    I am still better off after the surgery than before - at 57 my weight has been a stable 75 - 78kg for about 30 years

    Best of luck for your operation

    Jerry, male,57, Scotland

     

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    • Posted

      That is very helpful advice.   Often the surgery does remove the obstacles to swallowing by gravity, so it helps alleviate the problems but probably does not achieve a complete cure.
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  • Posted

    Thanks for all the great replies and advices! I have already felt I will still be my own "guide" to what to eat and what not, even after the surgery and that's fine for me, but I do hope that at least some of the symptoms will be better than they are now.

    I will keep you all posted about how it goes ;-).

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