1. Community
  2. Gut, bowel and stomach
  3. Oesophageal Achalasia and Spasm

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

Prev
  • Aqua-Man
    Aqua-Man Pasha333

    Posted

    What a FANTASTIC JOB!!!

    Congratulations carol and welcome to the discussion forumn.

    I am also a new member and we all can relate to your agony and heart break as you watch a loved one deprived of the essentials needed for life.

    This has been more agonizing to those around us than to ourselves if that will help comfort you any about his pains.

    The pains are real and severe..the stress is that is not needed and all must be eliminated.

    The surgery is the first step towards saving his life..it will give him relief and no matter how good he feels afterwards..the disease is still there and will come back if you do not change his lifestyle.

    I apologise that he has issues with milk..I feel like that is essential for fighting our disease and would like to encourage you to keep trying to get permission from doctors on drinking it. It will take most of his pain away even if he cannot get it into his stomach.

    I had a lot of similarities in his problems regarding the gullet too..I developed ulcers and was days from death when I checked in...

    The first night, I had acid shoot into upper sphincter and nearly died..the nurses took away my I.V. and never saw it again..which was unusual considering I had gone over 7 days with no liquids.

    Bt they had gotten me up to high enough level I was not dying of dhydration anymore.

    Hydration is the cure for the chest pains we call "spasms" too.

    Exercise sounds hard to do for him right now..but it is very important to strengthen those lung and heart muscles again to get rid of the pains.

    I was only able to walk 25 ft after hospital...but I kept pushing and now I am walking 5 miles a night.

    I am 3 weeks from test redo..and 4-6 weeks from surgery a Heller.

    But I am still seeking natural solutions for us all to help.

    Any drugs you can get him to alleviate his pains will help him too..but not help put the achalasia back into remission.

    We have medicinal marijuana in the U.S...I find it best to make butter and put it in any food that requires butter...smoking is too dificult for achalasia patient under attack..

    Keep doing what you are doing and consult with doctors prior to listening to idiots like me on the internet.

    I was able to put my attack into remission and doing amazingly good prior to surgery.

    I am looking forward to hearing your progress...I PROMISE IT GETS BETTER HERE OUT!!

    You are NOT alone and we all will pray for the both of you!!

  • letitia60960
    letitia60960 Pasha333

    Posted

    Hi Carol- I read all the replies on this post and feel like I know you and your hubby smile, Meryl, Graeme and all the others!  I'm new to this site, having just discovered it today and was glad to have stumbled upon your post. This is all relatively new to me, with symptoms that started in early June. What caught my eye is that I currently have the same symptoms your husband had in the beginning. Chest tightness, a heavy feeling so to speak - pain in   my neck/throat, a tightness that starts in the front of my throat and goes up the sides to just under my jaw (like a lump in my throat) - and the burping!!!  It's awful. I think the difference is that my symptoms are continuous. They  never go away. By the end of the day, I often have pain in my chest from all    the burping. The burping is interesting because I don't feel like I have gas. I feel like I have to do it to relieve the heaviness in my chest, yet it doesn't help.  My symptoms started with a severe case of heartburn which lasted  for about six days, and then the heavy chest and burping started. I saw my   doctor who prescribed Prilosec - preventive antacid, which did not help. I called him back after two weeks and he suggested I take it for six weeks. Still no relief, he then sent me for an ultrasound of my abdomen and I saw a GI. I further had blood work, and a CT scan of my abdomen. All normal.   Today I had an endoscopy and apparently that was normal too. I am waiting for biopsy results now and follow up with my GI for next steps. I have a feeling he will have me do the myotomy as he briefly mentioned a "test with a tube down my nose" when I first saw him as a possible next step if  endoscopy showed nothing.  I only occasionally have trouble swallowing, where I feel like food is stuck in my chest. Rice is the worst!  I thought that would be good because it was bland but the few times I ate it, it took forever to go down and each time I dealt with regurgitation. After reading these  posts I will for sure avoid rice (although I had come to that decision on my own)!  I do wonder if I have the beginning stages of achalasia. I'm just glad that I was able to see a specialist quickly. Guess I will just have to wait and see. I hope not..... Sounds like there are loads of tests to be done. I just want the chest/throat heaviness, and burping to stop! It's exhausting. My symptoms do not seem bad at all, compared to others I have read about.  Thank you for listening!  I'm in the U.S.  Love England - only visited once but I hope to get back there one day!  The people were lovely!
    • AlanJM
      AlanJM letitia60960

      Posted

      There are now notes from the Achalasia patients meeting on 15 July regading various foods that cause problems.   Go to the Oesophageal Patients Association website, then The Oesophagus - Achalasia.

      If you have achalasia, the barium swallow test should reveal the problem.   The heaviness in your chest / throat MAY be difficulty in food progressing down your system.   In your position, I think I might try eating very carefully, little and often, soft, easily digested foods for a while to see if this makes a difference.    The burping may be caused by some form of indigestion / dyspepsia.   There is a logic to these progressive medical tests and I hope the underelying cause is established soon for you.

  • linda89207
    linda89207 Pasha333

    Posted

    Hi, I have been getting chest pain and tight crushing across chest, pains radiating into neck and jaw through into back between shoulder blades down left arm shortness of breath, no burbing,heartburn or problem swallowing at all.

    I was diagnosed with Coronary Artery Spasms/Microvascular Spasms nearly 2 years ago, on all heart medicines to open up arteries slow release GT tablets and also GTN spray, aspirin,omeprazole and furosemide for ankle swelling.

    Numerous A&E admissions (23 this year alone) now another cardiologist is saying not heart insisted was a hiatus hernia and needed an endoscopy this came back clear now wants me to have a manometry test which I am waiting for appointment. I would appreciate any opinions anyone has as I am now reaching the end of my tether, I must just add that I am not depressed just very frustrated so anxiety is not the problem.  

  • Dodoman7642
    Dodoman7642 Pasha333

    Posted

    Carol i am now 55 and have had achalasia 7 years now and I still get severe pain and now I get breathing problems where I cant breathe enough air I get so scared but I must changge my diet so I been told.

    My surgeon couldnt to Heller myotomy because all my gullet is badly scarred to much nerve damage so I must put up with it botox had 13 and they last 8 weeks max and told another balloon dialation could be fatal so thats my story i feel what your partner is going through. It has ruined my social life I hardly go out always make sure I have ice water with me just incase of a spasm attack.I get so depressed because i cant enjoy food I blend everything. I also dread christmas worse of all. I hope surgery works I really do.

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.