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Recurrence of Achalasia after Heller Myotomy

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gallopinglawyer
gallopinglawyer

Hi

I'm now 38 and was diagnosed with achalasia in 1998. The condition stated in late 1997 and progressed very quickly. I was unable to eat any form of solid food and every meal had to be accompanied by buckets of water!

I had the myotomy and a fundoplication in Sept 1999.

However, the symptoms soon returned. They never got as bad as they were before the operation, but I think suffers of the condition become very adept at managing the condition.

I went through a series of dilations and other tests until, in 2005, my surgeon decided that another operation was the only hope. However, by this time, I had completely lost confidence in my surgeon and decided to live with the condition.

I have found that swallowing has continued to get worse over the years, but I manage it reasonably well by drinking lots of water with meals and avoiding problematic foods such as bread, pasta and fruit.

However, I suffer from dreadful substernal pain and have been admitted twice to A&E with a suspected heart attack. My use of painkillers is now at pretty serious levels so I am having the condition investigated again.

I guess that I knew this was inevitable, but I'm not looking forward to the barium swallows, endoscopy, manometry etc and I guess further surgery is unavoidable.

I utterly sympathise with those who have the condition. It is painful, restricting and embarrassing - you only have to regurgitate an oesophagus full of chewed food over a plate to realise what a bummer of a condition this is. It may not be life threatening, but it is certainly not fun!

I wish everyone with the condition every best wish in managing their condition.

PS - I really struggle with my weight and am now 5 stone overweight which must be a record for achalasia!!! Would love to hear from anyone in a similar position.

8 likes, 120 replies

120 Replies

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  • ctreeves62
    ctreeves62 gallopinglawyer

    Posted

    Well I'm from the US but symptoms of achalasia are the same no matter where you live. I was diagnosed a few years ago and trying to look on the bright side thought, well at least I won't gain wait like most do during menopause. In reality I would love to have to diet rather than fight this illness.

    I can completely relate to the social emmarasment that this disease brings, you tend to isolate yourself rather than go out and burb & vomit and other such party tricks that this disease brings to eating.

    i have been so blessed to have a tolerant husband. Years of sleeping next to a wife that up 4-5 times a night vomiting can not have been fun.

    i just recently have had the heller myotomy with fundoplication and its too early to tell but I think it will really help with eating however, I am still having the awful painful espogeal spasms( mimicking heart attack pain chest radiating in jaw and arm).

    If any of you have any suggestion on how to manage the spasms I would be forever grateful!

    i have taken most meds, and they work but not for long. I will have a spasm and take meds, and 10 minutes later the pain has return. Looking for a long lasting medication and would love to avoid narcotics!

    nice to know I'm not alone and I truly wish all the others best of health, especially to those people with young children. Just broke my heart reading that kids were writing father Xmas to help heal their father 

     

    • teresa_08485
      teresa_08485 ctreeves62

      Posted

      Hi. I suffer from this dreaded disease. I too suffer from the horrible, heart attack like, spasms. They radiate to my jaw and into my arms. I can get up to 4 per day or more. I haven't found anything to help this. I just drink water to help them go away, which, doesn't always work. I had one spasm last for 3 hours straight. I was sweating it was so bad. Let me know if you have found help for this. My doctor told me the next step for me, if my myotomy stops working, is to remove my esophagus and attach my stomach at my throat. 😨 Lately, the swallowing has become more difficult and recently, my esophagus has started making noise, like it did right before I got to the point of not being able to take in anything. I'm still trying to be optimistic. My doc told me I could try viagra for the spasms but as a woman, he wasn't sure insurance would cover it for non traditional use. I hate having to take medicine so I'm not trying that yet. I feel like soda pop make my spasms worse so I only drink water. I'm 1 year post heller myotomy.
    • AlanJM
      AlanJM teresa_08485

      Posted

      Does it make a difference if you dring ice cold water?
    • Montu
      Montu teresa_08485

      Posted

      Hi Teresa 08485

      I just read your post and wanted to suggest medication that I take for the chest pains - Nifedipine and Im on 10mg - When I have a Spasm and have to take a tablet - I break it in my mouth and swish it around my mouth inorder to get it in to my blood stream quicker - That was one tip that Dr Heading suggested and boy does it work quickly...... Spasm be gone!!! :-)

      Hope this helps for anyone else with this "Intresting" disease - Best wishes to all with it.

       

    • Nettie_Noo_Noo
      Nettie_Noo_Noo Montu

      Posted

      Hi Montu, I live in the UK but, will definitely be enquiring about the Nifedpine as I have tried everything out there and, nothing eases the chest pain not even Oromorph. I am hugely distended and, have been for 12 weeks. I was due to have an oesopegetomy as I’ve had two open thoracic Hellers last one being in 1991 and, my oesophagus is in very bad shape. The surgeon ordered an urgent CT scan as he and, my gastroenterologist both suspected a tumour but, thankfully it isn’t but, they have no clue as yet as to what is causing it. They want me to now have one last dilation and, are referring me to a specialist surgeon that does a lot of work in balleatric and, oesopogeal cancer. Take care and, many thanks for the advice.
  • amorris4883
    amorris4883 gallopinglawyer

    Posted

    I am 31 years old, in the US....I have been dealing with all of my food and drink getting "stuck" since January of this year. I had my first endoscopy, with ballooning, in March, I had roughly five days relief. My doctor wanted me to wait two weeks, for everything to heal completely. So, then I had to have the barium swallow test. That showed that I have severe acid reflux with a delay in my esophagus emptying. From there I had another endoscopy with ballooning, with another five days of relief. Then, came the horrible esophageal manometry test. This is where my diagnosis of achalasia came from.  I have dealt with the horrid muscle spasms in my esophagus and the "choking" had progressively gotten worse and worse. This by far has been the worst disorder I have ever, ever had in my life. I had the lower heller myotomy with partial Toupet fundiplication surgery done 6 days ago. So far, I am miserable. I am a huge lover of food, and the liquid diet is one of the hardest things to stick with. I know this will pass and I will be able to slowly start trying more and more foods. The foods that I have eaten, have gone down better until today. I'm hoping it's all in my head and the swallowing will be better after I recover, rather than still have trouble with food going down and not get stuck. I hope I am a success after having the surgery, but I'm guessing only time will tell. 
    • gypsarella
      gypsarella amorris4883

      Posted

      Hi amorris-

      I will share my recovery experiences with you so you will see a light at the end of the tunnel.

      I just saw my surgeon for the follow up three weeks post-op.  Everything is fine and I'm cruising along as expected. Two weeks out and I was depressed because it was Saturday night and I wanted a burrito, chimichanga style, which means deep fried until crunchy.  I had a chicken instead of my usual steak.  I scooped small spoonfuls out of the soft insides that easily chewed to mush and broke apart to fit through the muscle that was still swollen.  Not a problem.  That was until I decided to tear up the crunchy outside into little pieces, which chewed well, went down fine.  At the end of the burrito shell was a nice crunchy bottom, where, I reasoned, I could chew it very much and enjoy the crispness.  I forgot that it had to be able to break apart into small pieces so as not to irritate the muscle.  YEOW!  I felt a large dull pain, and immediately afterward, a dull ache everytime I used my muscles to sit up or move.  I also had that sharp gas pain in my left shoulder that happens when food gets stuck. This went on for hours. Luckily I knew because I just had a workup with my cardiologist, that I was not having a heart attack.  I suggest anybody over, say 50, should have a cariology evaluation and tests to determine your heart health because it will SO give you peace of mind should this happen to you!  I put myself on soup and yogurt the next day and it finally felt fine. A few days ago I had a hissy fit because it was Saturday night and I wanted our usual take-out dinner, not creamed vegetables and mashed potatoes. So I sipped a Diet Coke through a straw.  Small sips. (Carbonation Probably added to my remaining gas from surgery but it was worth it to me)   So I slowly ate a slice of pizza.  I took small bites and chewed well.  I did the same with a couple honey bbq chicken wings and no problem.  But I must have been sleepwalking later because I apparently ate two more slices at midnight.  I felt the pressure as I swallowed and was awake alll night with coughing and left shoulder pain, meaning I had overstuffed myself and it was storing in my esophagus.  I know this because that is exactly how it felt when I  had the lapband and ate more than the pouch size.  (That is originally how I damaged my esophagus.)  I was surprised but happy that I experienced that pain because it is negative reinforcement on overeating!  THAT is the whole idea of the band!  Punishment for overeating.  If it doesn't come right up, it causes pain.  I was pretty swollen for two weeks, and I still feel a little swollen, but the surgeon said I will go down just a little more in the midline and the rest is me.  She said full recovery for this is 6-8 weeks, not 6 months as someone said on this forum somewhere. I am now released to swim, get on the treadmill as I can, and do what I want.  Hopefully with my back pain, I can start slowly on the treadmill and get in decent shape eventually. I would just say to you to remember to take in very small bites of foods that will break up on their own when the swollen muscle tries to squeeze shut.  The pain happens when there is too much and the muscle is irritated.

  • amorris4883
    amorris4883 gallopinglawyer

    Posted

    Thank you so much for your reassurance. I am at a week since surgery. I was suppose to wait until tomorrow (day 8) to start my soft food diet. I just couldn't wait that long...I have felt like I was starving. I have lost 6 pounds since my surgery, last Wednesday. So, today I have had mashed potatoes and gravy, dirty rice, a baked potato with butter & sour cream and a small bowl of chili. Everything has tasted AMAZING and has gone down with no problem. One thing that does bother me is sprite, coca cola doesn't do it as bad or sweet tea....so I guess I'll hold off on the sprite intake for a while. I am such a huge lover for food, so I am counting down the days until I can have pizza, hot wings, salad, tortilla chips and salsa, bread and my all time favorite for Mexican! I'm taking it slow, but I feel like I am never going to be able to enjoy my fave foods again. I know that probably sounds silly, but this surgery has been more trying, depressing and difficult than I expected. 
    • Elkaa
      Elkaa amorris4883

      Posted

      How are you now? I'm facing a decision about the hm surgery or wait for the poem one. Suggestions are welcome!

  • gypsarella
    gypsarella gallopinglawyer

    Posted

    This reply is for amorris, despite what button was available for the reply.  It sounds as though you are advancing nicely.  My doc did caution me on plain bread, so I will relay what she said to you.  Toast would be better at this point.  Bread is spongy and can turn glue-like when mixed with saliva so hold off for about three weeks.  Also, I don't know about you but after years of coughing and damage from the gastric contents, my esophagus is damaged and I have been completely hoarse for about a year.  The hoarse voice improved greatly after surgery, and I was told it would heal to some extent, but we'd have to wait and see.  The problem is with very spicey foods.  BBQ sauce goes down well, but anything with cayenne pepper does not and sends me into spasms of coughing.  Any coughing defeats the purpose of the healing and may eventually leave permanent scarring.  I find cracker crumbs get into whatever cracks and crevices my esophagus now haves and causes huge amounts of coughing.  You have to experiment with what works for you, but I'd wait until 2 1/2-3 weeks just to be sure you won't be forcing your swollen muscle to fight with food that is too big, thereby irritating it and causing renewed swelling and you'll be back at week #1.  Good luck to you and keep posting.
  • deborah07844
    deborah07844 gallopinglawyer

    Posted

    Hi, im a 53 year old female diaganosed with type 3 achalasia .I also have problems with my weight ,and find dieting near impossible !!!! I am currently waiting for the operation any tips anyone . I try to keep up beat about the whole thing ,but I have to say it can be pretty miserable . But i will keep smiling 

     

    • amorris4883
      amorris4883 deborah07844

      Posted

      Hi deborah07844. I hope you are having the surgery soon. I was very nervous to have the surgery, and the first few days after the fact, I honestly felt like I made a bad decision. But, as every day goes by, it does get easier and easier. I am a lover of food, so I would say the liquid diet was my toughest task. Be sure, not to drink any carbonated beverages. I am a sprite lover, and it is a definite no, no! You will experience gas bubbles like never before. So, I have transitioned to sweet tea. Much better. I have had no problem with my food going down or it getting "stuck". Which is a nice change. Keep your head up and know that you will get some relief once you have the surgery. I hope you have results as good as mine. Granted it has only been 8 days since my surgery, I can tell a huge difference....no regurgitation of food/liquid, no reflux/heartburn, no choking on food. 
    • Elkaa
      Elkaa deborah07844

      Posted

      I have achalasia 1 and am wondering which surgery you are having? POEM or HM?

      Also, have you tried any meds? I asked my doc. to try an antianxiety med, liquid form, he gave me valium to try. I heard from a doc. That she tried xanex or something and it helped.

      How are you doing now?

    • faith50
      faith50 Elkaa

      Posted

      Ellkaa, my husband was just diagnosed with type one achalasia he takes medicine for thyroid but has since been put on Xanax for anxiety I take his pills and I crush them into powder form and he takes it with water and they go down fine.
  • amorris4883
    amorris4883 gallopinglawyer

    Posted

    Thank you for the tips gallopinglawyer smile I am a HUGE fan of any type of bread, but I can remember before the surgery that I had a harder time with bread because I could imagine it becoming sort of paper mâché type material in your esophagus, so, I have refrained from any type of bread as of yet. Today has been much better. I had a yummy dinner of mashed potatoes, macaroni, garden peas, green beans, and steamed cabbage. Everything went down well, but I think I have sort of experienced something similar to what you had the night you ate too much. I have been extremely bloated feeling and very uncomfortable, no pain, just the feeling of over eating. From now on, I will be sure to eat smaller amounts more often throughout the day. It's all a learning experience. I am feeling more "human" every day that passes. I'm slowly learning what is best for me and things that aren't so good. Thank you so much for all your tips and posts. It seems to help being able to relate with people who have the same disorder and have had the same surgery. 
    • deborah07844
      deborah07844 amorris4883

      Posted

      Thank you , can I ask where you had you op done ? as not all surgeons have had experience . I am just grateful that I have gt a diagnosis , it all seems very difficult , is there a charity or organisation that helps people like you and I . Please keep getting better you honesty is very appreciated . Ive just been onto the hospital and its going to be a long wait . But hey ho 
    • amorris4883
      amorris4883 deborah07844

      Posted

      Hey deborah07844. I'm not sure where you are located, but I'm in the states. I had my surgery done at N.C. Memorial Hospital. Have they told you when you will be having your surgery?
    • Elkaa
      Elkaa amorris4883

      Posted

      I can't eat bread, but I can eat chips or nut crackers. I can't eat nuts!

    • carole74347
      carole74347 amorris4883

      Posted

      Hi!  I live in NC and will be evaluated at Chapel Hill.  Who did your surgery, were you satisfied and how are you now?  Thanks!
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