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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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  • AlanJM
    AlanJM gallopinglawyer

    Posted

    It is sometimes (perhaps often) the case that procedures do not work first time and for ever.   The important thing is to have the tests done, and I realise that this means repeat procedures for you, but the surgeons should be used to this happening; they do have further options like a fundoplication wrap.   I think you should seriously think about going back to them (or an alternative centre for specialist Upper GI surgery).   It is to do with muscles and the longer you leave things, the more your juscles will be trained out of doing their work for motility.
  • claire79031
    claire79031 gallopinglawyer

    Posted

    Hello, 

    Like many of you I've been struggling with Achalasia for several years and just underwent the Heller Myotomy surgery.... actually I'm in day 8 of recovery. I'm terrified to hear that many of you had recurring disphalgia so soon after your operation and want to do everything possible to avoid that outcome for myself... 

    I am so sorry to those of you that this has happened because if you were like me, just getting a diagnosis of this unbelieveable disease was such a huge relief to me and my family. Learning that I could actually be cured was like winning the lottery.... literally.... I've been regurgitating EVERYTHING other than frozen yogurt for about a year now, am 5'6 and weighed 90 pounds the week before the surgery. 

    I did not find relief in any of the tips that many suggested such as forcing down food with hot water, chewing slowly (liquids would not even pass through so chewing a lot/eating slowing was useless) avoiding certain food groups... none of this worked for me. The sad truth was that I am so busy that I almost let this disease just take over and become a part of who I was.... I ate in private, preferably at home close to my sink so I could dash to the garbage disposal between swallows (this was my preference to the toilet as I had 1 to many incidences of poorly kept toilets in unfamiliar places splashing up in my face), my friends were more accepting than my family that I just wasn't going to go out to dinner with them anymore.... or if they persuaded me, they would soon regret it when my excusing myself from the table every 5 minutes became uncomfortable.... 

    I look like I have an eating disorder... I am quite small to begin with and then with the worsening of symptoms in the past year and loss of an additional 20 lbs, it was clear to even strangers that I had a problem.. the worst is that I travel for work and am often dining with clients. This became extremely awkward and I have avoided at all costs best I could. 

    Anyway, I've included all of this to re emphasize how extactic my family and I were after I finally took the time to get do the Mannometry Study to determine that I had a clear case of Achalasia.... (btw I only got serious when I woke up several nights choking on my own salivia)

    So after receiving this news in May of 2014 , we have been counting down the days to this operation so that I can finally get my life back! I will be devastated if my symptoms return. 

    I am so blessed to have a family that has ralllyed around me during this time. I am only 25 so it has been perfectly acceptable for me to move back in with my parents for a couple of weeks while I recover. My mom's friends are all my guardian angels and have made sticking to the pre & post operative diet very easy. (may be easier for me since I was actually looking forward to eating these foods as well as the heavier stuff that I'm starting now... but nevertheless, it sounds like sticking to the diet is the only thing that us patients are in control of to help reduce the risk of unsuccessful outcomes so I wanted to share a couple of tips. 

    If you have not yet had the surgery, I would highly recommend preparing food that you will be able to eat on the Clear Liquid Diet & Liquid diet PRIOR to having the surgery.... you will be very drowsy and in pain for the first few days after th e operation but will still want to eat. And the more varierty you have the easier it is to stick to the rules and not go crazy with hunger. 

    To Prepare for Week 1

    Clear Liquid Diet (day 1 -2)

    Make:  Homemade Chicken Stock -- So Much Better homemad than in box from the store - make and freeze about 10 plastic containers of these with 2 cups in each container

    Buy: Popsicles (lots of different varietys of juice popsicles as long as no chunks of fruit; Luigi Ice (lemonade flavor is my fav); Jello (orange and red ind of girl)

    For Liquid Diet- Day 3 -6

    Make - Tomato Basil Soup - if you make 6 - 8 containers with 2 cups of homemade tomato soup, you can heat these up on the stove in just a couple of minutes and make a hearty meal. (add tablespoon of half of half while on stove) 

    - banana pudding 

    - custard

    Buy: Instant Oatmeal (quaker oatmeal with brown sugar); plain vanilla and chocolate icecream; more popcicles; 

    - My mom's friend is amazing, she made me 12 containers of the chicken stock and tomatoe soups and stuck them in my mom's freezer the week before my surgery. I LIVED off of these soups for 6 days and am so thankful that they were already prepared and easy to throw on the stove. Many times my mom was here and able to make them for me. But it is so nice to have everyhitng in advance to have less to think about when you supposed to be healing. 

    I will say this past weekend my mom was away and I had many friends and family checking on me.... I was beginning to feel so much better and was very tempted to cheat and go ahead and start the soft foods diet because I thought it couldn't harm... but since I still had my soups available I chose not to risk it... may have been different had I been trying to choose where to go to buy some lousy soup that I didn't want to eat on the final days of this terrible diet.... so take my advice! 

    Any way so far I am doing well, today i started my soft foods diet and was able to eat scrambled eggs this morning, Mac & Cheese for lunch, chicken salad this afternoon for snack and twice baked potatoes for dinner. smile ..... I pray that I do not have to give up these wonders again with the return of symptoms!!! 

    Will keep you posted but everyone keep your chin up... I was amazed to find this site and it was so comforting to find people going through the same thing as me. I think it is important that we continue to share knowledge and information with the world as this disease has affected to few.... God gives us challenges for very specific reasons so if we all continue to contribute to the collection of the knowledge on this disease, I feel sure we will all (and many others) be better protected in the years to come. 

     

    • AlanJM
      AlanJM claire79031

      Posted

      I would urge you not to worry, if that is possible, because you have now had the procedure, and there is a good chance that things will work really well for you.  Whilst it is true that for some people there is a relapse after this procedure, there are a good many for whom it is successful in the longer term and there is no reason why you should not be one of them.   Let's hope so!

      There are a number of young people who are mis-diagnosed with having eating disorders when the real problem has been achalasia, but the good thing for you is that you have clearly been seen by specialists who have made their diagnosis and done the procedure.

      For people who have had procedures of different sorts, it is often the case that they have to look after the parallel track of trying to remain as relaxed as possible to give their re-arranged digestive system the best chance of success.   That means, for some, that they have to alter their lifestyle quite a bit, and avoid rushing around, taking time to eat meals in a relaxed condition, and to try and avoid too much stress.    I think that this is because some of the issues that drive achalasia are the nerve systems that operate the muscles operating the sphincter muscle between the oesopahgus and the stomach;  and the muscles that drive the peristalsis, the regular contractions that take food down through the system.   And nervous tension might make that worse.

      So I entirely sympathise with your fear about the symptoms returning - that is quite natural, and you would be unusual if that were not so:  but I do believe that you should be quietly confident that things will be better for you now, and that you can remain positive about the benefits so far.   And it is an opportunity to tey and re-build some of the pleasure that can come from tasting and enjoying food.

    • Finally17
      Finally17 claire79031

      Posted

      Did you have the fundoplication? Or just the heller myototomy?

      Thanks for sharing your story. It has been one of the most relatable to me. Especially about wanting to throw up in the sink and not the toilet!!

      I am in the process of testing, which so far points to achalasia. Which makes sense based on my troubles. I am excited to have a diagnosis and i am hopeful that surgery will help.

      How are things going now?

  • shawnylove
    shawnylove gallopinglawyer

    Posted

    My precious angel, my grandson was diagnosed with Severe Achalasia apx. 4 months ago. He is age 4. He had to be placed on a nasogastric feeding tube for a month and a half. He had the surgery with the fundolication (spelling). He has been home for a month and is right back where he started vomiting every thing. The surgery did not work. He is now on clear liquids and had the swallow study today. He is such an angel, and has been so sweet and positive through having the feeding tube and surgery. He even prayed to thank God for helping him. After all that a month later it's back full force. The doctor said he could only have clear liquids and is waiting for the films to be sent to him. Tomorrow is my sweet boys 5th birthday and he is home on clear liquids. He is very upset. Underweight. His surgery was a couple days after Christmas when he had to be on feeding tube but stayed positive. Now he is really getting upset. This is all pretty new. Obviously the surgery did not work. I am so broken hearted! I would gladly take this instead of him. What comes next? He had the manometry, heller surgery with fundolication. Need advise. What comes next? What is best? How to explain to him what and why this is? What will the future hold? Can he live a normal life? Will he be disabled? I'm am in despair in Virginia USA? Much love and God bless!
    • AlanJM
      AlanJM shawnylove

      Posted

      Our bodies are not perfect and sometimes don't work properly.   The doctors do their best to sort things out but it is very complicated.

      I think that my approach would be to have a review undertaken of why the surgery has not worked, and what exactly is causing the vomiting at the moment.   Did he have vomiting before?   I think he would need to have a scan, and another barium swallow test to see how liquid / food goes through the system and where it gets stuck.   Perhaps it is a nerve reaction that is causing the vomiting?   Perhaps it is food not going past into the stomach, collecting and fermenting?  I am speculating without medical qualification here.

      So there needs to be a review and discussion with the surgeons, and at his age especially, I would be inclined to consider a second opinion, or an independent clinical review from a children's specialist in this area (but such a specialist would be very rare).

      Ther are variations in surgical techniques that involve how much of the circumference the 'wrap' encloses.  Perhaps this might be an issue?  Perhaps not?   It is surgery that can sometimes be revised and re-done but it would need a very experienced surgeon to do this.  As I understand it, the best centres in the USA include USC Tom DeMeester’s old department. UCSF Pelligrini's old dept. Marco Patti. Jeff Peters in Rochester.

       

    • valerie97984
      valerie97984 shawnylove

      Posted

      I was only 24 years old when I had my Heller and it worked for many years. Only in the last six months have I started to consider another sugery and I am now 15 years out from first surgery. Good luck
    • losjones
      losjones shawnylove

      Posted

      Do you know about achalasia specialists at UCLA? I have been referred there for a consultation.
    • AlanJM
      AlanJM losjones

      Posted

      Afraid not , but if you see a specialist experienced with this disease you should be OK. The process of making the diagnosis after endoscopy, barium swallow test and high resolution manometry is important.
  • robinhood
    robinhood gallopinglawyer

    Posted

    I am very similar to you as I had the operation 2 years ago which was successful for a year, then I had a blockage and was rushed to hospital where it was cleared. I am now having botox injections which have helped but I have been three times to A & E with chest pains as though having an heart attack but each time its related to the digestive system. I have problems with weight increase but its because I use so much mayo on everything and so many sauces to help the food go down.

    I will go a day without food when I have pains in the chest but have lots of fluid until the pain eases.

    I was told by the doctor never to eat bread again, which I have stuck to but I also avoid cakes, rice, pasta in fact anything that can swell after digesting.

    • AlanJM
      AlanJM robinhood

      Posted

      If the food is sticking around in your oesophagus you are doing the right thing in avoiding food that swells.   White / soft bread is indeed a problem in this regard.   Some people find that bananas help;  and indeed buscopan, an anti-spasm medication.

      You might like to experiment with sauces that are not spicy or strong;  you certainly need to keep a soft and slippery consistency for food, and probably eat 'little and often' - if there is too much food stuck, it weighs down the oesophagus and makes it 'baggy'.  This is easier said than done, but consciously trying to relax whilst eating may help.

    • AlanJM
      AlanJM

      Posted

      Amd I have just remembered ...  some people find iced water helpful (or cold ice cream)
  • babyblues65
    babyblues65 gallopinglawyer

    Posted

    So, I'm trying to understand, is it feasible to have another baloon dialation following a heller myotomy?  I'm just curious as I have had a baloon diation back in the 90s then a myotomy in 2010 but I've noticed swallowing is becoming difficult again.  I am just wondering do I just live with it or is there anything to try and help?
    • AlanJM
      AlanJM babyblues65

      Posted

      Your oesophageal sphincter (ie the valve between your oesopahgus and stomach) stretches as a natural part of the process of dealing with food, so I think that technically, yes, a stretch /dilatation could be undertaken, but it might just depend on how many degrees of the circumference the wrap enclosed (there are surgical variations), but it is a surgeon who would be able to advise you.

      This is a condition where patients often do have to return after a while, so I do think it is worth going back to the surgeon to see what can be done.   The earlier you go, the better really.    I imagine that they will repeat the tests so as to be sure about exactly where the problem is occurring, and this may affect what can be done.

      There is always a parallel track of trying to reduce tension in the nerves whilst eating food, and generally trying to reduce stress and anxiety which can often make the condition worse.   This s easier said than done, but it is nevertheless a suggestion.

       

  • birgit22406
    birgit22406 gallopinglawyer

    Posted

    Hi,

    I am 42 now and after years of suffering from heartburn I was finally sent to endoscopy and they found that they had to push the camera through the sphincter muscle as it would not open and that my gullet was widened.

    I had found that food was not going down well but I put that down to not chewing proper when at my breaks at work. However it became unbearable over the last year or so and at every meal. I had reguration and acid reflux and also would wake up at night choking  and coughing ( thought I do have a acid reflux pillow).

    I eventually went through all the other tests as barium meal and manometry to be finally diagnosed with Achalasia.

    I had my Heller Myotomy about 4 weeks ago and as everybody else am still on sloppy diet. Swallowing problem and reguration are gone now. I actually can sleep through the night now.

    I still have a problem with acid reflux / heart burn. At times it seems to be worse than before although I am on PPI. I hope it will ease with time. It is early days yet.

    There are things that I found trigger my heartburn. Eating biggish portions is one of these triggers and it will be hard to adjust to smaller portions as I do feel hungry most of the time..

    The other trigger seem to be acidic foods. I will have to experiment there but in general there is a saying to only take in 20 % acidic foods and 80 % alkaline foods wich again is not easy to manage as most "modern" foods as milk products and grains and fruit are acidic. There are a few lists with acidic and alkaline foods on the internet and they also hold some surprises.

    In general I feel much better than before the op and hope that this will last. I feel as I can get the heartburn under control if I put my mind to this and remember to eat small portions.

    Wishing all of you the very best.

    Birgit

     

    • AlanJM
      AlanJM birgit22406

      Posted

      Glad it is so mch better.   You could try thinking about whether you eat in the evening.   Making the last meal of the day earlier can help.

      You are quite right about some food being acidic, but your stomach acid is really powerful and not many foods would have a real impact, but it is worth researching / exploring that side.   And keep a food diary so that you can identify any that give a particular problem.

      It may also be worth your doctor reviewing the PPI dosage.   I think I am right in saying that a PPI should be taken before food (have a good look at the label) because when you take PPIs can have a significant effect on how well they work.

      You might also try Gaviscon for night time, as you can get this over the counter at a pharmacy.   It creates a protective raft and works differently because it is an alginate.

      Some people raise their mattress or have special pillows so that they sleep with their head / shoulders raised to let gravity keep the acid in place.   Or put a block under the head of the bed.

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