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I have suffered from achalasia for approx 10 years (age ...

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I have suffered from achalasia for approx 10 years (age 40). It took sometime to diagnose as the first symptoms were similar to that of a haitius hernia - heartburn and reflux. Gradually the reflux became more severe and I started to loose weight, food was sticking in throat and sleeping became difficult as I was continually coughing. More tests, the endioscope showed nothing,barium swallow, then a manometry test or something similar was carried out, tubes were passed through the nose down the throat and this confirmed that the muscles in my throat were not working and that the sphinter valve was only opening intermittently. By now my weight was down to 6 stone (I had been 8.5 stone). Dilation was decided to be the best treatment and whilst waiting for this I used nifedapine which I found did help if taken 30 minutes before eating. The first dilation was successful for 3 months, then I was back on nifedapine whilst I waiting for the second. It was only successful for 6 months, then back on to nifedapine whilst another course of action was decided. Unfortunatley, I had to keep increasing the amount to get the same results as my body became used to the drugs but fortunately just as I was reaching the max daily dose, I had key hole surgery, Heller's procedure and a reflux barrier built and I haven't looked back since. I still rely on gravity only to get my food down plus liquid. Dry food like scones/sandwiches can be difficult but with the help of a drink to wash it down - no problem. From my experience I would go straight for the key hole surgery and forget the dilations as for me they were a waste of time. I had the op 7 years ago approx and have to say it changed my life. I can now go out to restaurants and have dinner again and I am now up to 9 stone. The only downside and it is only a slight annoyance is that I do get heartburn from time to time but I would rather live with that as its easily and quickly treatable than with the achalasia symptons that I endured for a number of years.

SW, Aberdeenshire

[i:252fb6b69b]This message was automatically imported from the original Patient Experience[/i:252fb6b69b]

0 likes, 5 replies

5 Replies

  • Guest
    Guest

    Posted

    I too have had achalasia for many years. It also took sometime to diagnose. All the symptoms described by SW Aberdeenshire are exactly as I describe them to my Consultant. I too had dilation but this does not help me at all (I was also given Nifedipine). Unless you have experienced Achalasia it is very difficult for anyone to understand how difficult coping day to day.

    My Consultant has suggested for some time that I have a Heller's procedure and from the information I have sourced on the internet it may well be the best way forward for me. I been given details of hosipitals that carry out this procedure, but as this is such a rare condition it seems that Heller's Myotomy is not carried out frequently. I will be seeing a Surgeon soon who carried out this operation perhaps four times a years.

    Would it be possible to put me in contact with a patient has had a Heller's Myotomy so that I can discuss the proceedure with them.

    The final paragraph from AW was that he/she can now go out to a restaurant and have dinner again - how wonderful it would be to choose what I wanted from the menu instead of finding food I can possibly eat (on a good day).

    [i:22a4ef49b3]This message was automatically imported from the original Patient Experience[/i:22a4ef49b3]

  • Guest
    Guest

    Posted

    Ihave just returned home (yesterday 20.01.06) after having my operation on the 17.01.06, iI am totally pain free and able to eat soft foods at the moment and will be able to resume a normal diet in about 2 weeks if you have any question feel free to get in touch and i will give you as much info as i can.

    [i:cd37f7bef2]This message was automatically imported from the original Patient Experience[/i:cd37f7bef2]

  • Guest
    Guest

    Posted

    I too would be very interested in getting in touch with j Berry and steve Daddy. I am going to see my consultant tomorrow after 2 very recent failed dilations. I now am faced with the Hellers myotomy and share the same worries as J Berry. I would be very interested to hear from you particluarly the hospitals and surgeons you have been referred to.

    Julia Shorthouse - 24th January 2006

    [i:8eb6113a0c]This message was automatically imported from the original Patient Experience[/i:8eb6113a0c]

  • Guest
    Guest

    Posted

    i have my operation probably on the 7th of feb. im admitted on the 6th so i persume so. i went straight to stepping hill in stockport although i live 2 hours away because i was sent from an eating disorders unit nearby. My surgeon Mr Decadt seems to know exactly what hes doing. im glad to hear from steve daddy that 3 days after the op he is pain free, as pain is a large worry of mine. 2 weeks before a normal diet seems reasonable.

    [i:1bc2f0669c]This message was automatically imported from the original Patient Experience[/i:1bc2f0669c]

  • Guest
    Guest

    Posted

    I was intrested to read about SW, Aberdeenshire as i am waiting to go in for my operation for acahalasia and have concerns after being told that i would never regain my swallow and would have to rely on gravity to take me food down. So it is reassuring that you can return to a normal way of eating and drinking. the only dissapointing thing for me having put up with the sickness unable to eat food unable to sleep at night due to coughing is that i never seem to have lost any weight which has suprised both of my consultants!!! although i would not have wanted to lose a vast amount of weight it would have been helpful to have lost a few stone.

    [i:0107981b25]This message was automatically imported from the original Patient Experience[/i:0107981b25]

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