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

Posted , 12 users are following.

Pasha333
Pasha333

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.

6 likes, 59 replies

59 Replies

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  • graeme35202
    graeme35202 Pasha333

    Posted

    Yes i think you may be right. I have come to the conclusion that eating rice after this op is a no no. You do need to eat bulky fibrous foods which are easy to swallow and will go through the new valve. Trouble with rice is it sticks together and is very soft and makes a good plug. I dont have too much difficulty with pasta which may now replace rice in chinese or indian food. I add rice to my list which now includes bread and chips. But post op things can tighten up, either due to other muscles in tge cardia or some fibrous tissue forming.
  • graeme35202
    graeme35202 Pasha333

    Posted

    I had a barium swallow last week which shows some tightening around the lower end of the oesophagus (gastro oesophageal valve) and seeing surgeon in march and no doubt a re-do of the myotomy which is 75% successful second time around so the odds are in my favour.

    I knew something wasnt quite right. After the op i had a couple of months where all swallowing was normal but i gradually noticed an increasing difficulty with some foods. I have not experienced any night time reflux so the fundoplication has done its job and food is going down, eventually and at thecmoment, thankfully, not sitting in my oesophagus.

    Of course it culminated with recently not being able to swallow a rice meal and a trip to A/E.

    BUT since the op i experience a pain in my stomach , to the right side, which radiates to the middle of my shoulder blades. Its like severe indigestion but isn't. At first i thought it was trapped wind and i deal with it using cold water drinks and paracetamol. As my swallowing has got worse this pain has become more frequent almost paralleling it. Originally i asked my surgeon if it was possible that it was a trapped nerve, the one from the spine to the stomach and he vaguely dismissed this. However im starting to think there is an association. My stomach problems did start many years ago after playing rugby and injuring my upper back.

    So im starting to wonder, is achalasia as a result of a trapped or injured nervecin the thorasic spine.?? When i see the surgeon i might just ask for an MRI scan. I am HLA B27 positive which is the gene marker for Ankylosing spondylitis.......is this part of the answer for achalasia ????

    I will keep you posted on my progress

    • AlanJM
      AlanJM graeme35202

      Posted

      Nerves are very complicated, and the pain sometimes occurs some distance away from the problem.  The surgeon may have simply been thinking through something else in his mind when he replied?   I do not think bits of the vagus nerve get trapped as such, but there may be something of the sort;  I do not think that any or many people know too much about how this complex system of nerves affects achalasia.

      In some ways, it might be interesting to try acupuncture - on the basis that it wouldn't do any harm, and might provide another insight into nerve systems?   But that is purely speculation on my part.

    • Merryl
      Merryl graeme35202

      Posted

      Hi Graeme, Did you have any pain in your oesophagus before you had the operation?
    • graeme35202
      graeme35202 AlanJM

      Posted

      Hi

      Yes you may be right. The vagus nerve doesnt get trapped but there is a bundle of nerves that could and this may have an effect..i dont know but id like an mri scan.

      On the point of acupuncture i would be really interested in looking at that as an option.

  • graeme35202
    graeme35202 Pasha333

    Posted

    Yes i did for two reasons. If food dies not pass easily into the stomach the normal contractions of thecoesophagus go a bit haywire and you get quite a painful spasm which can feel like a heart attack. The other pain i got was due to acid indigestion and the burning pain at bottom of oesophagus that feels like a knife turning, pain between shoulders, up into side of neck. The pain i get now is a bit similar to acid indigestion and i think is due to reaction of residual intact muscles in the cardia or trapped nerv in spine.
  • jody76982
    jody76982 Pasha333

    Posted

    I also get the pain in the side - like stitch, and a tight pain in my chest which goes to my back.  I had the Myotomy and other surgery last december, and my specialist has recently said to look at PEOM.  I am now taking Laprosole, but that does not help much.  Check out the top tips for those with Achalasia - I am going to try drinking more warm water, and water with Manuka honey and lemon.
  • graeme35202
    graeme35202 Pasha333

    Posted

    After my recent barium swallow my surgeon wrote to me confirming e achalasia is back and he will see me in march to discuss way forward. There is only one way and thats a repeat myotomy. Im not too upset as 40% patients post myotomy get a recurrence of symptoms and second time around success rates go up by 73%. I dont have any nightime reflux and whilst my swallowing isnt good its not as bad as it was pre surgery. I am able to eat with warm water. I still get the stitch/cramp/spasm type pain to the right of my stomach. It is helped by water and paracetamol. Im sure thus is due to muscles missed first time round in myotomy or rejoined and going into a spasm. I have been researching and may be that achalasia results due to a lack of nitric oxide. It explains why angina medicines can help with swallowing by causing vasodilation. Some people taking cialis or viagra have reported easier swallowing. Of course these cause vasodilation which in men is how they cause an erection. There may be a value in taking these drugs to ease streamlining in achalasia. No reason why women as well as men cant take these for achalasia . Anyone have anything to add or any experience???
    • Pasha333
      Pasha333 graeme35202

      Posted

      So sorry to hear you've developed recurance of your achalasiaand wish you all the best for that. However it would be very wise to consult with your Dr before self medicating with vasodilators. Whilst they may have huge potential benefits, they may also carry potential detrimental effects to those with certain heart/circulatory conditions.
    • AlanJM
      AlanJM graeme35202

      Posted

      Nitric oxide does get mentioned in relation to achalasia but you would need to take medical advice because it may not be the answer, and you really need to talk to somebody who knows the subject really well.   Not least because not all achalasia is the same as everyone else's.

       

  • Pasha333
    Pasha333

    Posted

    So here we are six months Hellers and Partial Fundopilcation post op to date. 

    Hubby is doing good smile As you said Greame, 75 to 80% better than before the Op.

    He is eating pretty normally now (although has had to have all this teeth removed due to malnutritian from the condition) and mostly it stays down. He eats little and often and ensures most of what he eats is high in nutriants and calories. To date he has gained nearly a stone since the surgery.

    Anyone considering a Hellers... fear not, know it is no pic nic, but there is hope afterwards.   

    • graeme35202
      graeme35202 Pasha333

      Posted

      Hi. It's good your husband continues to do well. I had a barium swallow which showed that the mounting didn't get all the muscle fibres of the cardia and this explained why some of my swallowing problems got worse. I had a balloon dilation under GA a few weeks back which hasn't really worked. My surgeon in very reluctant to consider a repeat myotomy as he would be faced with a lot of scar tissue from first op and it then gets a lot more dangerous. I am trying to find a surgeon in the UK that performs the POEM op as this would probably be the best bet.

      If I had to score my swallowing at the moment out of 10 I would probably score it a 5-6. I can eat most things slowly with a hot drink (always with a hot drink like tea) which really helps swallowing. I can't eat rice or very soft things and vegetables and salad are easy to swallow.

    • Pasha333
      Pasha333 graeme35202

      Posted

      So sorry to hear this. However, curious to hear that soft foods give you issues as it is the same with hubby. Again, agree with the fluids. He never tackles food without a drink nearby.

      I hope you find a surgeon who can perform the poem.

    • graeme35202
      graeme35202 Pasha333

      Posted

      Soft foods are a problem. As the gastro oesophageal valve has become a narrow channel , anything soft and compactable like rice can block that channel.(rice blocks your kitchen sink strainer easier than chunks of say broccoli) More fibrous foods are easier to swallow. I love rice but it's not worth the discomfort. Hot drinks def help with swallowing. Cold drinks a no no.
    • AlanJM
      AlanJM graeme35202

      Posted

      I think it might just depend on whether you had a fundoplication / wrap with your myotomy as to whether POEM would be possible.   It sounds like you did?

      The rice probably does act a bit like it does with the kitchen sink.   There is a delay between swallowing and then that food passing through into the stomach, so eating slowly is indeed worth doing;  otherwise it will just stack up in your oesophagus.

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