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Nissen fundoplication - Take Down/Reverse - HELP!!

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  • Nissen fundoplication - Take Down/Reverse - HELP!!

    Please help! Is there anyone out there w/experience/feedback in having a Nissen Fundo taken down completely? I'd seen some previous posts on this subject but didn't see any final answers (see bottom of note -- Julie, Penny, if your're still out there, and have any feedback, would greatly appreciate it!).

    I was a singer, was experiencing vocal problems, and Nissen Fundo was recommended by voice teacher/doctors. At the time I never had experienced serious heartburn, I didn't have any kind of erosion of the esophagus, throat, mouth -- I just had a lot of congestion that was preventing consistent vocal clarity. I had thought my problem was upper respiratory infection --but doctors told me that it was reflux and refused treatment of sinuses, etc unless I completely ruled out acid reflux first. I took all of the prescription meds for acid - didn't really make a difference in terms of digestion, and didn't clear up my voice. But doctors insisted that reflux was the problem and I was finally convinced to undergo the procedure - 5 years ago - and every day of my life has been absolutely miserable ever since. (in addition -- I've had Ph probes, post-surgery - I have absolutely 0 occurrences of acid reflux at this point, but I still have the same exact congestion issues that I had prior to surgery).

    After the surgery I lost 55 lbs (i wasn't overweight to begin with) Ever since surgery eating solid foods has been a MAJOR problem. Often food gets stuck partway down in my esophagus and I sit there in pain waiting for the food to either be pushed back up, or forced down eventually. Obviously I try to eat very carefully & chew food thoroughly. I have terrible gas-bloat no matter what I eat - my stomach is blown up, and since it's absolutely impossible for me to belch or regurgitate anything at this point, I then have terrible, embarrassing flatulence. With the gas-bloat comes terrible gas pain/cramps. This is a major problem that impacts me every single day. I've basically isolated myself for the most part - I work at home as much as possible, and avoid social situations wherever possible - have lived w/comments, negative remarks from people about this - but it's beyond my control at this point (I try to clean myself out/starve myself when I have important meetings at work, or social functions that I can't get out of---I know it's not a healthy way to live, but I feel like I don't have a choice right now). I've had the flu a few times post surgery - nausea is another nightmare - my body attempts to regurgitate, and I feel pain at the valve area at that point, but nothing can come up. One time, I sat through this for a day & a half, until finally my body expelled all of the toxins as diarreah.

    Since I've been living this way for a long time -- I've tried everything in my power -- dozens of medications --prescription & non, for gas & bloating, to speed up or slow down digestion, meds to relax me/muscles, etc -- no success w/anything. Have rules out bacteria/infections of the stomach/intestines. Over the years I've made major dietary changes: no junk food, no fatty foods, no acidic foods, no coffee, no processed foods, no sugar, no milk, no wheat products/breads---have tried all of the recommended diets out there for digestive wellness, one after the other--again no success (diet today consists mainly of rice, fresh veg's, small amount of fruit, nut butter, some fish)(well i feel better & it improved my energy/skin in some cases! but not the main issue). I've done colon cleanses, liver & gallbladder flushes, enemas, vitamin c flushes -- on & on. I've tried all the herbal remedies I could find- same thing.

    I had over a dozen dillitations to stretch the area - on a weekly basis --- this provided immediate relief (after the 1st one I was able to actually belch!!! the 1st time in years!)--but the relief was very short term (as in 1-2 days max). When none of these things worked - I had a revision - where the wrap was supposedly half-taken down - this was 2 years ago. I've been patient & gave the revision a chance -- but it hasn't worked -- I can still feel it - the wrap is too tight -- I have all of the same symptoms whenever I eat. Since then I had a pill swallow test -- the doctor said he wanted to really rule out whether or not the wrap was tight - he said he gave me the smallest size pill that is used for this test (I think it was 1cm, or maybe less?) -- I got to watch as the test was being performed: the pill got stuck exactly where the wrap is - even when I gulped down water after taking it.

    I'm at my wits-end. I've been as patient as I can -- I've listened to the doctors, and have carefully followed instructions (e.g. when trying medicines, diet changes, herbal rememdies, body cleanses, etc). Every day I live w/pain and embarrassment from this. I'm lonely as hell, from avoiding people due to gas-bloat. The isolation has cost me some missed opportunities at work -- loss of some friends (due to avoidance) -- and haven't gone on a date since the surgery was done, due to the embarrassment. I know all of this sounds extreme but have been living with the daily hurt of embarrassment over this and have made tough choices as a result of this.

    My form of escape/comfort has been to dive into (and hide) in mywork--I've been successful w/work, and luckily, many of the people I interact w/are long-distance at this point. But now, due to work performance, I'm facing a huge dielema -- I'm about to be offered a promotion/dream job, which requires me to relocate to the company headquarters (where my boss & other upper management work)--the job, and the location is my total dream. But the problem is, I'll lose a lot of the freedom/flexibility I now have, to work at home. And i'll be working closely w/a large # of people, and I don't think I'd be able to stand the embarassment re: gas bloat thing (and unfortunatelyI can't just give up eating!).
    (I went through major embarrassment right after the surgery at work, because I was working in a very busy office around a lot of people--who were often (almost daily) directly rude, and not very understanding-- my boss at the time took pity on me, because my I outworked almost everyone else in my dept, and found me my present job - which allows me more flexibility/ability to work from home at times)

    Need to note that prior to ever having this surgery I was very happy (other than my singing). I had lots of friends, was very athletic & active (this has since majorly declined, due to lack of energy per decreased food intake), and a very social person - and had been in a long-term relationship at the time. I very rarely experienced stomach upset, and never every had any problems w/gas or bloating.

    If there is anyone out there who can offer me any experience or feedback --- of if anyone knows of a doctor or medical center who might be able to assist me with take down/reversal of the wrap - I'd greatly appreciate it (I've gone back to the surgeon I worked with locally -- when asked point-blank -- he said that yes absolutely 100% that the wrap CAN be taken down -- but so far he has refused to help me w/this).

    Thanks very much.

    __________________________________________________ __
    PREVIOUS POSTS I'D SEEN ON THIS SUBJECT:
    Nissen fundoplication take down/modification

    From: Penny
    Remote Name: 152.163.201.61
    Date: 05/26/02
    Time: 12:20:30 PM
    Comments
    Has anyone had a nissen procedure revised or taken down? My original surgeon said they can take it down, ie. reverse it and the last surgeon I went to said this is permanent and can only be revised.My new docs tell me this is a very serious procedure.
    Re: Nissen fundoplication take down/modification

    From: Julie
    Remote Name: 152.163.205.78
    Date: 05/26/02
    Time: 05:46:26 PM
    Comments
    Hi Penny:
    I will be asking that question this week...My GI doctor is suggesting that to me, but I just don't know what to think about taking it down...I had the this done 6 months ago and starting 3 weeks ago all my heartburn etc is back in full force...I will post Friday after my Scope...Julie..p.s. Why would you have it taken down??

  • #2
    I feel for you

    Hi Sean:

    I will be two years post-op in November...Unlike you I can eat whatever I want and can BURP VERY LITTLE....But I can eat...

    But I do have the same problem, BLOAT/GAS all the time for the last two years...No answers from any GI doctor except "Live with it"....I can relate to it...

    I wish I could help you with your problem, I'm not sure they can take it down...

    I had a very bad case of (bad food from McDonalds) the other day and wanted to throw up so bad and could NOT...

    I can say I no longer have that awful heartburn, but I wish I would have known I would have to live with Gas/Bloat for the rest of my life, not to sure I would have done this...

    I wish you the best of luck in this, please keep us posted.

    Julie

    Comment


    • #3
      I have been in search of the answer to this question for many years
      I also would like to know
      From what I can ascertain technically it can be undone, but I have never heard of it actually happening to anybody.
      My case is very similar to yours it was about 6 years ago lost count as my life has been in turmoil since, all I know for me it was a death sentence Gas/Bloat every night making it impossible to get a nights sleep
      I have asked the surgeon numerous times to undue it, but he out right refuses
      I saw one of my many GI” just last FRI and he said it’s very common for this life time of Gas/Bloat

      Comment


      • #4
        Hi Sean,

        I am not sure what to tell you about taking the wrap down. But I could offer you is to call the surgeon who performed my surgery, he is simply the best at it and I know he would know the answer for you. He fixed a lot of people with similiar problems like yours and he is very nice to work with. He is in NY and his name is Barry Salky, he is excellent. He performed my FUNDO 6 months ago and I am feeling much better than I did before. I am still recovering but I am improving. I do have problems with GAS/BLOAT but it's not that bad. I can burp and food goes down fine. According to Dr. Salky, if the surgery is performed by experienced surgeon, we should feel completely normal, we should be able to eat normal, burp and even throw up normally, however he told me throwing up could damage the wrap. Your wrap is too tight and you need to have it loosened so you may want to give him a call and see what he will tell you. I am not sure where you are from but if you live close to NYC you may want to schedule an appointment. If not, give him a call and see what he says. His # 212-879-6677. Keep us all posted and good luck to you.

        Luke (Milan)

        Comment


        • #5
          Sean123,

          I truly hope that you find a solution to all the troubles that you have been having. But just out of curiousity, did your voice problems go away after the fundoplication? Did your sinuses clear up? Or are you still having those problems as well. I hope everything works out.

          -Dante

          Comment


          • #6
            Hey Sean123,

            Milan is right. Dr.Barry Salky is the man. He did my revisional surgery because my first wrap was made way too tight by another unexperienced surgeon. Your wrap is definitely too tight. I went through the same thing you did for a year and had to be dilitated(stretched with balloons via endoscopy) and it did not work at all. You need to have revisional surgery. What they do is take the wrap down and rewrap it only not as tight. Like Milan and myself said, Dr. Salky is the man. If you go to see him tell him Nick from the deli says Hi!

            Nick

            Comment


            • #7
              To be fair for the benefit of those people that are considering this procedure
              The reason I had such a bad result was because I was not a good candidate and should never have had it in the first place.
              I think this applies to Sean.
              There might be some people that get completely turned off after seeing this post that might greatly benefit from the Nissan
              If you read all the posts there are over whelmingly more pluses than negatives

              Comment


              • #8
                thanks

                Julie, RobertW, Milan, Dante, Nick,

                Just wanted to say thanks so much for all of the feedback, really appreciate it, and it was very helpful to me, even just to know that I'm not alone out there w/these issues.

                Dante-- my sinuses did not clear as a result of surgery-- but believe that this may have been an existing problem, unrelated to reflux. I have spoken with other singers who have had the surgery who experienced major improvement in congestion, esp in the throat (lump in the throat disappeared for them---one was former voice teacher).

                Milan, Nick thanks very much for the referral - that's great -I'll be calling Dr. Salky tomorrow!

                Robertw--I've been scanning medical research articles the past couple of days re: complications related to Nissen. I found a couple of Researchers at univ of cal. (one I believe is a surgeon)who did treatment/study on patients w/complications - their article, published this year - mentions successful, full take down of the wrap in a few cases where revision didn't work (doesn't mention any major subsequent problems for these patients, just that they ended up going back on acid-blocking meds) ---I'm going to try to call/write to them, ask them for advice.

                And agree with your last post, Robert, that I'm in the minority, and probably didn't need the surgery in the first place. From what I've read complications of this kind are only a problem in 6-10% of the cases, if that --- and most people I know who had the surgery were very happpy with it overall, and didn't experience all of the same complications.


                Thanks again to all above for the feedback & support, really meant a lot to me. Will let you know how I make out.

                Sean

                Comment


                • #9
                  If you find a good surgeon to do the take down please let me know as this is what I want
                  Before I had this procedure I was completely symptom free and off all meds for 6 months my big problems started from day one of Nissan
                  My surgeon won’t do it, but what incentive is there for him getting into a can of worms
                  I think he did a good, job but not for my pluming
                  We do dumb things, but hindsight is 20 20
                  I live on the west coast Canada I’m sure there’s a surgeon closer I will have to pay myself, but the price is cheap to get my life back again.
                  probably $20,000?


                  Email: (Request e-mail from webmaster)

                  Comment


                  • #10
                    RobertW,

                    Just curious, why do you think/know you were a bad candidate?

                    -Dante

                    Comment


                    • #11
                      Question

                      RobertW...You said.................

                      "Before I had this procedure I was completely symptom free and off all meds for 6 months my big problems started from day one of Nissan".

                      If everything was going well...why did you opt for the surgery???

                      Comment


                      • #12
                        Because my problem was all gas/bloat, even before the procedure the Nissan was the very last thing I needed of course I didn’t know it at the time, I thought it was just heartburn or whatever were all green at first.
                        And the fact that I was symptom free and off all meds for 6 months
                        This only happens during sleep I guess being static there’s no escape it just builds up.
                        I can endure the pain, but not the extreme sleep deprivation.
                        Thanks for the interest

                        Comment


                        • #13
                          LSAT thats the $64,000 question if only I could turn the clock back
                          My problem would go away then come back I thought if I have this done it would never come back
                          only it did 50 times worse

                          Comment


                          • #14
                            Not sure

                            Ok Everyone:

                            Like a lot of you, I'm almost 2 years post-op (In November) and my heartburn is back big time, for the last two weeks its been just awful...

                            Anyone know a good Doctor here in Chicago, I live in Gurnee, IL (By Great Ameria) if anyone knows where that is....

                            I HATE my last doctor...

                            And my food is getting stuck big time again, no idea why...

                            Thanks
                            Good luck to all
                            Julie

                            Comment

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