Post - Heller Myotomy & Fundoplication Surgeries

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I am now around 9 weeks post-surgery for the Heller Myotomy & Fundoplication.  I have been blessed with a wonderful couple from this Forum, who have been mentoring me through all this.  However, I would like to hear some more comments/experiences from those who are also Type 1 Achalasia.  How did your surgery go?  Do you now eat much better?  How long has it been since your surgery?  How long did it take for you to eat better than you were pre-surgery?  What 'can' you eat now, that you didn't before surgery?  How often do you get spasms?  Do you still get stuff 'blocked' in the esophagus?  Do you still 'liquids' just sitting in the esophagus? Look forward to hearing from you.

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22 Replies

  • Posted

    HI Donna

    My husband had a Hellers Myotomy with Fundoplication two years ago now. Whilst we were never told he had Type One, his Oesophagus was completely paralysed and we were told he was ‘gravity fed’.

    For the first year post op, he continued to suffer and would frequently have the same symptoms he had at diagnosis. In fact he returned to drinking protein shakes he was given on prescription. He continued to eat pureed foods and tiny grains like rice, etc, would stick and he would regurgitate. He continued to lose weight.

    His surgeon suggested a follow up endoscopy and it was discovered an area of the sphincter remained thickened and he underwent Botox on this area. 

    After this things improved. Whilst he will always be gravity fed, he drinks plenty of fluid still and most things will go down. Clumping foods still present a problem; bread, thick potato mash, chips etc still won’t go and in fact create a blockage and still cause regurgitation. He simply avoids foods that will do this now.

    At diagnosis, he was told he would never again “enjoy a steak between to crackers” and this is essentially fact! Meat tends to stick too, but soft meats like chicken or mince (even made into a loose burger) will now go down with plenty of fluids.

    Are you suggesting you are still struggling with eating?    

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    • Posted

      Thank you Carol, for responding.  Pretty much sounds like the road I am travelling right now.  It really is good to hear of other people's experiences, so that I know what to expect, and that others have these same issues.

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  • Posted

    Hi Donna i also have type 1 Achalasia i had the Heller Myotomy with Fundoplication done coming upto two years ago now i was on soft foods for a good two months then went onto things like mash and soft vegeatables i was to scared to try much more. it was a strange feeling at first after so many years of struggling althought food went down slowly it did go through. It took me a while to try different foods i think my consultant had hoped i would of put on more weight than i have altought that was more down to me having a fare of my food getting stuck than the op not doing what it should. Before surgry i could just about manage two to three mouthfulls of food before it would become stuck i still cant finish a platefull. I still get amazed when i manage something i couldnt eat before, i can eat about 60% more foods than i could before i still cant eat things like chips,sandwiches most meats things that are dry mainly without having my water nearby. At first it was very uncomfortable when eating i would feel full quickly and i could feel my stomarch pulling that has eased off but it does still pull sometimes.The chest spasms i had before surgry would last for hours and where very painfull now i rarely get them and when i do its more manageable. I was very nervous before having it done not knowing what to expect afterwards but im glad i did, my stomach still feels differant inside where its been moved and it does feel uncomfortable from time to time but compared to what i went through before its ok.  I know im never going to be normal and im always going to have trouble eating but it has given me some relief for now, I can at least enjoy the foods i can eat. I think i will always have to frantically look over a menu when eating out to see whats the easyist thing for me to eat and have water on the table but im used to that so its ok.

    Give it time im sure you will do ok it just takes time get use to.

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    • Posted

      Thank you , Nikki, for replying.  I saw the surgeon again this past Monday, and he has ordered an endoscopy to be done, and perhaps a baloon dilation.  Things have not improved much.  He said, being 3 months post-op now, there isn't going to be any kind of 'miracle' happening, so he does not want to take a 'wait and see approach;' he prefers to be pro-active.  So, I will trust his expertise and judgement.  Apparently, things are more difficult for people like myself who have had Achalasia for 'decades;' the esophagus itself, may be 'floppy.'  The surgey might need to be 'tweaked.'  So, hopefully after this, I will be able to eat a little better than I am now.  Also, still losing some weight. 

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  • Posted

    Hi Donna

    Its good to hear you have a good relastionship with your consultant alot of people struggle to find good medical advise and expertise on Achalasisa i would myself listen to what they had to say,I went nearly 20 years undiagnosed after doctors not understanding what was happening it took one good doctor two years ago to direct me to the right consultant who instantly know what he was looking at and he has watched over my case ever since. I cant give an opinon on the dialation as ive not had it done but i understand whats involved and maywel need to have it done at some point in the furture, Im sure your consultant will go through everything with you.I to have a dialated esophagus throughout and it was made clear to me by my consultant before surgry that this isnt a fix more as trying to limit furter damage to the esophagus I cant say everything has been smooth sailing since having the Heller Myotomy as it hasnt as everyone who has this condition will understand the daily struggles. But i try to take the good points when i can, little things like now being able to sleep lying down where as before i would sleep sat up as my stomach would regurtiate food and i would choke while i slept. I can see from your post that your in one of the low points at the moment everyones experiences seem to take a differant path i think we are all  trying to find the best way throught with limited options. I hope all goes well if you decide to have the dailation and you can start to have some relief

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    • Posted

      Nikki, thank you again.  I have a question.  The 'pulling' of your stomach, as you described in a previous email, is that how you 'know' that food is moving down into the stomach?  With that pulling, did the stomach, or sphincter muscle or whatever, also make sounds?

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  • Posted

    Hi Donna

    The pulling feeling i described was at first when the food passed through the wrap into my stomach, But mainly when i got full which can happen quickly its more an uncomfortable feeling as my stomach becomes full its starts to pull  inside around where the Fundoplication wrap is. It still does it now if i eat alittle more than im use to eating, Also around my operation site is still alittle sensative. I did at first get alot of gurgling sounds everytime i ate i cant remember when that stopped im affraid but it doesn`t do it now . Hope this makes sense.

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    • Posted

      Can you actually tell when food is going down, from the esophagus?

      I have absolutely no motion in my esophagus, paralyzed [done]; even as I write this, I feel the water I just sipped, just sitting in the esophagus.  Apart from the 'shiver' sensation, and the sort-of pulling feeling that you describe, I do not 'know' if food/liquids are actually moving down into the stomach.

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  • Posted

    Hi Donna i know exactly what you are describing i cant feel food going down my esophagus only a build up of pressure in my chest if it gets blocked, I know when the food has passed through into may stomach as when i drink i wait until i can feel a cold feeling flush through to my stomach.
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    • Posted

      THANK YOU!!!  You have given me the 'answer' to my question; you hit the nail on the head.  Prior to surgery, I would feel liquids go into my stomach by that 'flush' of coldness.

      I do not feel that flush at all now, post-surgery.  So, my theory must be spot-on, stuff is not moving down as it should.  It is sitting, and if I happen to eat too much [doesn't happen lately], then there is the pressure.  For myself, stuff seems to move in late afternoon [if I'm lucky] or after supper [again if I'm lucky] or when I've gone to bed.  Then the 'shiver' happens, the sort-of pulling feeling, and the noise.  I don't tend to overeat; seem to know my 'limits.'  I 'graze' as the surgeon suggested. I think the 'wedge pillow' that I sleep on at night, helps with the gravity.  When I eat, I have to 'wash' the food down with liquids [surgeon's words].  I still get the occasional spasm, they are getting less now, but as you well know, Achalasia has a mind of its own, and rears its ugly head at will.  Thank you, again, for taking the time to respond.

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  • Posted

    Hopefuly when you have the ballon dailation done this will keep your sphincter open enough for your food to slide through, The consultant said to me as he has used part of my stomach to do the wrap i now have only a small amount of stomach left and need to stretch it, I dont think i have managed this as i tend to get uncomfortable with the stretchy pulling feeling. However things are better than they was before a had the operation. Its good to talk to people who understand and can relate.

    Hope things work out for you.

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    • Posted

      Thank you, again.  This is probably one of the only disorders where you hear:  that we 'need' to stretch our stomach, or that we 'should graze' all day, or eat that dark chocolate, or 'get more calories into your body.'  But then, look at the price we have to pay, to hear these words....Achalasia...

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  • Posted

    Donna, I'm supposed to have the surgery in a few weeks. I am wondering if you could give me some hints on what I should be doing and what questions I shouls be asking.

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    • Posted

      Hi there.  Can you answer a couple of questions first, do you know what 'type' of Achalasia you have?  and, what 'surgery' are you having?

       

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    • Posted

      The hellers Myotomy, they are going to cut the muscel. Not sure what type but I've had the the ballon dailation and the pressure test which they said came back not very good. I do know most of the stuff I eat doesn't make it down and I have to spit it out. Great for weight reduceing but wife doesn't like it very much.

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    • Posted

      Okay...so, I have type 1 Achalasia.  That means my esophagus is paralyzed, done.  And the esophageal sphincter muscle at the entrance to the stomach was way too tight, and did not allow food/liquids to move into the stomach properly.  So, in November I had Heller Myotomy & Dor Fundoplication surgeries done.  In my pre-op info, I was not given the right information in terms of day-before prep. , and as a result, almost did not get my surgery done on surgery day.  So, by 4pm the day BEFORE your surgery, you should stop putting anything in your mouth!  You will likely be instructed to shift into a soft diet 3 days before, then a liquid diet, then a 'clear' liquid diet the day before surgery.  Again, I can't stress this enough, nothing after 4 pm the day before.  I had a small sip of water with a pill at 8pm the day before surgery, and the anthesiologist was freaking out, that there might be something in my esophagus....because of course, my esophagus is paralyzed.  I'm not sure where you are, but if you are in Great Britain, you will receive very good information, and Alan, if you are online, maybe you could give Budman the link to the patient's guide.  I am in Canada, and did not get much written info at all; it was Alan's suggestion for the above guide, that really helped me and still does.  I too, have lost a lot of weight, part of the disorder ....hey we aren't eating much... I would suggest that you buy, and drink nutritional supplements...I'm not allowed to give you a 'name' but you probably know what I mean...and go for the 'high-protein' ones.  These will be great for post-surgery; also puddings, warm soup [pureed] goes down nice.  And plan on drinking those supplements before and after surgery.  I'm almost 4 months post-op and still drinking 2 a day.  If you have further questions don't hesitate to ask me.  I'm sure others will also come into the conversation.  This is an excellent Forum...we 'understand' what you are going through, and I've found this site to be very supportive and informative in terms of sharing experiences and information.  I wish you well with your surgery

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    • Posted

      Thank you for your help, I'm in Ohio. Not sure if my esophagus is paralyzid I do know that the sphinster doesn't open and it takes a long time for food to go down. Really hate to go out to dinner because it is just a waste of money.

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    • Posted

      UCLA has some very good info online; I think I was able to print that info...you might it helpful for pre and post-op.  Eating out was not an option for me, for the 3 months leading up to surgery.  I was 'end-stage' meaning, I'd had Achalasia [unknown to me] for 'decades.'  You know how it goes, when food doesn't move down, you think you either ate too fast, or too much, and that 'everyone' experiences this.  Not!  It was the early stages of this wretched disorder.  Anything, even now, that goes in my mouth, goes down by gravity and has to be 'washed' down by liquids. The esophagus simply does not work.  After surgery, when you begin to phase in solid food, it will be by 'trial and error,' to see what will work for you.  Take your time doing this.. go slowly, introducing the solids.  Take your time with liquid, then soft/pureed foods.  I would be interested in hearing about your balloon-dilation, if you don't mind.

      My day  is spent 'grazing' food...small amounts, several times a day.  Dark chocolate, plain and bitter, by the way, is helpful in relaxing that sphincter muscle...I always have this on hand [part of the grazing].  If you ever needed an excuse to eat chocolate, well you have it now!!

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    • Posted

      The balloon-dilation wasn't to bad, they put me under what they call twilight after it was done the Doctor said he stretched it as far as he could but that it wouldn't work. The worst was the pressure test putting a senor thru the nose down the throat and swallowing small amount of water. That was when the said I nedded surgery.

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    • Posted

      Thanks.  Did you have any pain, the day after, in the esophageal sphincter muscle area? 

      The sensor test, was separate from the balloon dilation, right?  I had that done, and that is the definitive test for diagnosing Achalasia.  I had absolutely no motion [contraction/relaxation] in my esophagus.  Ten times I swallow that sip of water, and 10 times no movement.

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    • Posted

      After the sensor test my throat was kinda sore for a couple of days. I have some movement I think, but not very much it takes a long time for it to work it way down.
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    • Posted

      You are very fortunate to still have some movement in the esophagus, and actually 'know' when food/liquids are making their way down and into the stomach.  Your surgery will probably really improve on your eating ability.

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