So glad to have found you all... Our story

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I am the wife of a 53 year old who suffers from Achalasia. He has had the condition for at least three years although it has been a gradual dawning with new symptoms cropping up almost monthly.

It all began over Christmas 2011 when he suddenly began experiencing chest tightness and neck pain with chronic burping. These episodes lasted around fifteen minutes and were excruciating, coming to a head with a 999 visit onto the Coronary care unit. At the time, swallowing wasn't an issue. The symptoms sent him to Papworth where tests revealed nothing. Back to to our local hospital with liver function and GI tests, Ultra sound abdo tests etc, also revealed nothing.

By now it was Autumn 2012 and he was in a very dark place indeed. The pains were lasting hours now, not minutes and two more trips to A and E resulted in IV painkillers and we were still no nearer the truth. By now endoscopy and colonoscopy had also revealed nothing..... accept a hiatus hernia and curiously undigested food left in the gullet. By now his symptoms had shifted somewhat and we had the very first hint of dysphagia, or difficulty swallowing certain foods. He had to keep food a diary and was told it was 'All in your head'.... We decided to take matters into our own hands.

Spring 2013 and he sent of for food intolerance testing privately and the result was intolerant to Cows milk and Yeast. A newly adopted diet excluding these substances, did seem to help and all went quiet for another six months until suddenly he just couldn't swallow - end of, he just Could Not swallow. He lost weight at an alarming rate and was sent to see a Specialist once again.

Finally in Spring this year (2014) the Consultant suggested the holy grail, pressure tests (Motility) on the Oesophagus and the horrible truth was revealed. He had no nerve activity whatsoever and the gullet was effective paralysed. As well as this, the cardiac sphincter was so overgrown and tight, they struggled to get water the pass. He was put of high calorie drinks to support his meager diet and to prevent further weight loss. They even felt he had malnutrition. The hiatus hernia turned out to be dilation of the Gullet.

Two rounds of Botox over six weeks proved utterly ineffective other than to render him in agony as he regained consciousness. We saw a new Specialist two weeks ago and his immediate reaction was that this had gone on long enough. Hubby is at last awaiting the Heller's Myotomy with Fundoplication. We are assured this will happen within the next few weeks and if anyone is interested, I will keep you up to date on his progress.

Sorry if I have waffled, it is simply so good to finally be able to vent to those who have empathy and understanding.

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  • Posted

    It's sorry to hear that you've had the same run around as I have. I thought that I had some food stuck with no warning. My throat then went into spasm at which point my husband took me to hospital.  After 2 weeks in hospital still not able to swallow food no one actually looked down my throat my ms consultant even asked if I wanted a " happy pill ". The outcome was that I couldn't swallow as my oesophagus had stopped working.  I've just had a course of Botox injections in January which are no longer effective.  I too may have to have a myotomy.  Are you aware that they can do this via an endoscopy.  (POET) operation. Best of luck

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    • Posted

      HI Brightlights.

      Yes I had heard of the POEM method, however, he was only offered the Lap method, which he gladly accepted!

      I have to say, it is alarming how often Doctors write off your symptoms as anxiety or something simple. He was led to believe for eight months that he had IBS and was treated accordingly and unsuccessfully by our GP! And yes, happy pills were given! Eventually my husband demanded to see a Specialist thank goodness and even he scratched his head for a year! Eventually my husband described his swallowing as 'Trying to swallow a tennis ball' during one Consultation in Spring this year and the Specialist stopped writing abruptly and stared at him! It was then he sent him for Manometry testing telling him 'I know what is wrong with you.'

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  • Posted

    Hi Carol, I have already spoken to you a few times, but would like to add that when I get the chest pain / burping I find that if I bend forward I start to burp and the pain goes. If I can't burp I get a heavy feeling in my chest until I can burp. I have'nt been offered the manometry test? How did your Hubby cope with this test because I heard it is very uncomfortable.

    I would like to know how your Hubby gets on after his operation! 

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    • Posted

      Hi again Merryl

      The test wasn't too painful according to hubby. Mind you, he was told he had worse case scenario in which all nerve endings had died in effect and so no wonder he wasn't in discomfort. To be honest, it wasn't the test, but the outcome which stunned us the most.

      As for the burping, it seems to be part of the condition. In fact the Specialist suggested it was because the sphincter was in spasm and had trapped air beneath it that caused the discomfort and so you long to burp. I would never suggest it to him, but his burping is almost forced as though he is trying to relieve himself.

      I shall keep you up to date smile He has his pre admission visit to the ward on 30th Oct

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  • Posted

    Hi carol,

    My story was/is similar to your husbands. I had a myotomy and fundoplication a year ago. I think my symptoms are 75% improved. I still find some foods that are difficult to swallow such as chips. I find it easier to eat with a glass of cold water or water with some fruit concentrate in it but not wine. Ive found eating and dinking wine at the same time is a no no.

    I still eat goo fast and it does help to eat smaller mouthfulls and chew well and eat slowly. But since the op i have no discomfort, no reflux, no pain as such.

    Drinking gassy drinks is a little problem as after the op you cannot burp. So i te d to go for flat cola and flattish still beers. I do wake up at night occasionally with a bit of stomach discomfort but a drink of cold water sorts that out.

    In fact i do recommend cold water a lot!!

    Hope it goes well for your husband. Its a horrible condition but post op its liveable with.

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    • Posted

      Thanks so much for your reply Graeme

      Aha! Thanks for that! Wine with a meal was always such a pleasure for us, now to be attempted with caution post Op! He is so grateful to know that the Op is potential very successful. He longs to eat and is currently working on a list of foods that are going to 'Get it!'

      Oh yes, we go nowhere without water and carbonated water especially. I have told him to be careful post op of the fizzy stuff though.

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  • Posted

    You haven't waffled!  You have simply described a typical journey to get a proper diagnosis of an unusual / rare condition that needs a specialist centre to sort it out.

    The results for fundoplication are normally good.

    We are trying to organise another meeting for achalasia patients in London in December, and details of this will appear on the website of the Oesophageal Patients Association (under The Oesophagus, and Achalasia)

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    • Posted

      Sadly, yes, I guess it is a typical journey.

      He is so looking forward to the Op so the potential results it can bring bless him.

      Sadly, we are a substantial distance from London, but thanks sound good

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  • Posted

    Hi Carol,

    Really sorry to hear your husbands troubled journey, it really should not have been like that but of course as it is a rare condition it is not the Ist on the list.

    if you can ever get to London the Achalasia meet up group would be happy to see you both at a meeting, for support and sharing.

    Keep us posted on his procedures and outcome.

    All the best

    Jan

     

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  • Posted

    Finally - a date - hope - 19th December. Christmas is on hold, but we have hope smile
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    • Posted

      Hi Carol, It is good to hear that your husband has got a date for his operation. I am having more chest pain now and the loud burping. I am waiting to see a gastroenterologist, so hope it won't be too long. 

      Hope all goes well.

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  • Posted

    Hi Carol

    Tell your husband that op will make things a lot better but it will not cure it. Im over a year post op and as i said im 70% better and i think thats as good as it gets. I do have to avoid somec foods and go for softer foods and that easier to swallow. But im a world better than i was ...pain swallowing, vomiting what i had eaten, reflux at night and waking up choking.....no that has all gone. A lot better but not perfect. As i said cold water is invaluable. Ive even stopped taking all antacid medication.

    My best advice post op is dont think you can eat everything you want..as you cant. Eat slowly, chew well, and drink water.

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  • Posted

    Hi Carol,

    So pleased that you have a date.........wishing you all the very best.

    As Grahame says take it slowly, and do keep in touch.

    Regards,

    Jan

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