Post - Heller Myotomy & Fundoplication Surgeries
Posted , 6 users are following.
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.
0 likes, 22 replies
Pasha333 donna15310
Posted
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?
donna15310 Pasha333
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.
nikki108 donna15310
Posted
Give it time im sure you will do ok it just takes time get use to.
donna15310 nikki108
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.
nikki108 donna15310
Posted
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
donna15310 nikki108
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?
nikki108 donna15310
Posted
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.
donna15310 nikki108
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.
nikki108 donna15310
Posted
donna15310 nikki108
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.
nikki108 donna15310
Posted
Hope things work out for you.
donna15310 nikki108
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...
Budman54 donna15310
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.
donna15310 Budman54
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?
Budman54 donna15310
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.
donna15310 Budman54
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
Budman54 donna15310
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.
donna15310 Budman54
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!!
Budman54 donna15310
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.
donna15310 Budman54
Posted
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.
Budman54 donna15310
Posted
donna15310 Budman54
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.