nissen fundoplication complications

My wife had a nissen fundoplication operation four years ago, performed by Dr. Bell in denver, co. He had to redo the operation. Since then, as i mentioned in other postings, she has not been able to eat without extreme pain and nausea. He has told her to go find someone who might be able to correct the situation (his errors). Her gastroenternologist performed many dilations with no success and has basically told her to go elsewhere as he is confused. We have been all over the country and when docs find a difficult case that can't be resolved with ordinary tests they really want you to move one. The main resolution is narcotics which can relieve pain but then there is the addiction problem and the this simply masks the pain (which is not all that bad). This operation has many victims and should be avoided. So, one suggestion was a vagotomy. Anyone know anything about this? How about botox injections, any experience with this for stomach pain? We've tried nerve blocks and they don't work. Yes, I would like your help and suggestions. Many caring docs and bleeding hearts but like you all in here, we need solutions most of all

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Dear Denver88,
I know what she is going through. And I do not think that there is an answer. I have had 2 of these surgeries and am suffering with not being able to eat solid foods. I kept telling my doctor that it felt like my food was stacking in my throat and he told me it was OK. Well it wasn't. I was sent by my gastro doc here in town to get a motility test done. This test is the worst but it tells them what is really wrong in there. Out of the 40 times they had me swallow it only regestered 2 times. I was told if they had done this test before my surgery they would have known not to do it. Infact this test is suppose to be done before this fundoplication surgery. This tells them how tight the wrap should be done. Now I live on liquids and soft foods. But there are more times I just don't eat because the pain is so bad it is not worth it. I can not eat with out a bowl in my hand to catch what I end up throwing back up because it just will not go down. I can not eat dinner with my family because I end up gaging and then this upsets my kids. And it scares them. I can not go out for dinner with my husband any more because of this problem. I have a bad time explaining to people who ask us over for cook outs that I can not eat in front of any one because I will end up making everyone sick who has to be around me. I have found a lawyer and I am going to pursue getting some help. I have medical bill right now that I will never be able to pay. I have on going health issues because of this surgery. And will continue to have health problems. I think that this surgery should be stopped. And they said the same thing to me about the stretching and botox. It is not worth it. They can not tell me what the long term side effects from doing this every 3 months is going to be. And I understand about going to these doctors and him telling me everything is OK and now I know he was lieing through his teeth. I knew the day they did the surgery some thing was very wrong. I couldn't even swallow my own spit. It has been 2 years from the second surgery. I sleep sitting up. I am in pain all the time. Swallowing is a nightmare. I don't think that they will be able to fix what this moron did to me but I am going to make sure I get the medical help I need. I have lost my job do to the fact I can not lug and lift anymore because it causes me such pain. I can not go to far from the bathroom because I live with constant state of diarrhea. I am so sorry for your wife I could cry. I have to go up north in August to see another doctor who does nothing but deal with motility issues. I wish you both the best.

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You could try the University of Chicago and Dr. Marco Patti. He is supposed to be one of the best in the country. I just had the nissen fundoplication surgery on wednedsay and am doing okay. I got out of the hospital on thursday afternoon. I am eating a soft diet with no bread or meat for now. One stitch of pain over one of the incisions, and thus far this is the only difficulty I have had.

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I am Denver88's wife and the person whom he was referring to in his discussion. I am so very sorry to hear you are having exactly the same problems as myself. The only difference is I literally and physically cannot vomit. If I eat anything it just stays in my stomach for hours or even days. Physicians have described my stomach as "paralized". The Mayo Clinic in Jackson, FL performed surgery in 2007 with the thought that they would take down the wrap and redo it. But once they got into the area, they found a total mess....scar tissue thick and like ground beef and the esophagus was twisted and scrunged up. So all the dilations I had never had any possibility of working. After 5 hours of surgery to clean up the mess, the Mayo surgeon decided not to redo the nissen. He felt I was under anesthesia too long and didn't want to keep me under any longer. They wanted to wait to see if my symptoms improved with having the wrap undone. Unfortnately it did not resolve the problems. So very discouraging. I really hate to see others suffer through the same thing I do. I wish there was some way to inform the public about the consequences of this surgery. I had reflux so bad that my esophagus was being damaged and my vocal cords were swelling from the acid coming up from my stomach. I was offered two choices....have one of my vocal cords paralyzed to allow air to get into my lungs or have the nissen fundoplication. I researched both options very carefully and made the worst decision of my life by going with the nissen. I didn't want to loose my voice by paralizing the vocal cord - that seemed so drastic. I never expected to end up the way I am now. To make matters worse, many health care providers refer to the Nissen as a gastric by-pass procedure and people think I got it for weight loss. I have to always explain the surgery was performed because of GERD and NOT because of obesity. You are in my thoughts and I hope that you will find something that will help you. I wish I could provide you with some helpful suggestions but I can't even find anything to help me - and we have been all over the country looking for help. The consistent answer is sorry, we don't know what to do for you. I asked one of the experts if he was saying "this is the rest of my life?" and he answered most likely yes. I've seen several psychiatrists and couselors for depression but they are of no help. I already know how to meditate, biofeedback, hypnosis, etc. The bottom line - talking about it does NOT help or change anything. I've stopped counseling because it does not change the situation, delving into my childhood does not change the situation, etc. If I could vomit I would the next time I hear just take it one day at a time! When I know tomorrow will be the same as today...taking it one day at a time is useless!

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Had a nissen fundo in 2001 and since have had nothing but problems with nausea and everything that goes along with it.

Was so malnourished had to have a central line for TPN and then that became infected and became septic.

Had a pyloroplasty in 2005 and that did not help any.

Had the 8 hours manometry test and showed my stomach is completely paralyzed and the vagus nerve was probably severed.

Now living on a surgically placed j tube for nutrition and a PEG tube for draining the contents out of my stomach.

I have had to quit work and am now on disability. Doing better without the stress of work, but this surgery ruined my life. I thought I was having it done so as not to get esophageal cancer from the reflux and now I wonder if I should have just taken my chances with the cancer.

I feel for everyone who has had this done and get the run around from doctors. I too have been all over and finally ended up at University of Michigan and this is where everything was finally diagnosed.

There is not much they can do for me, but at least I know that it is "not in my head" like all the professionals insinuate.

Just had to vent a little here. Hope you have a better response than I did with surgery.

Linda

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Dear Denver88s wife,
It is like looking in a mirror when I read what you have wrote. You are so right in getting some thing out to inform the public of the complications from this surgery. I think it should be stopped. Yes if I could puke I would from hearing " just take one day to a time." Knowing full well tomorrow is going to be just like today. I can not stand for more that 15 to 20 min with our feeling like I am going to go on my face. I am lucky I have a wonderful family. But the crap they have gone through watching me fade from a mom who worked two full time jobs and who worked on our wood supply for the year to this person I do not know nor do they. My outer shell has gone to hell in a hand basket. My daughter told me a look like the cript keeper and she is right. They are so mad that this surgeon he knew full well on both surgerys that they should not be done but never told me and did them any ways. And he also knew full well when I came out of the last surgery what was wrong but choose to tell me and aray of well you have swelling or I was suffering from constipation. Yea constipation this is the reason I can not eat? This is when I knew I was not getting the information I needed. The doctor I finally got and I waited 3 long months to see him and it was so worth it. Validated every thing I have been telling this morons. There is nothing they can do the nerve damage is so bad. And I am like you, they can not undo it. He said I would most likey bleed out before they could do any thing. Now I have a feeding tube. I am going through some problems with the feeding also. I get violently sick while I am trying to do them. And then there are times when it just happens. It takes me from an hour to longer to do my feedings. Some times I will just skip the feeding because I can not go through it. It is sad that they choose to place us in these situations just to widen their wallets. And that is all it is money. As they say the human race is the cheapest commodity to use to get what they want. And my disability place is trying now to get me to go for consuling. This way if they say I am having mental problems they can cut me off. They do not cover mental problems. Go on line and look at what they have done to people to get rid of paying them. I could not believe my eyes. The underhanded things they did to these poor people. I have to tell you I am glad I started at 200lbs when this started because I most likely would be dead now if I had been 130lbs. And you are right about the gastric byepass crap. Been there done that. Oh you needed to lose weight? No! My acid reflux was so bad if a drank any thing and bent down it would come out my nose. Or burp and the food that would be stuck in my throat would come out my nose also. Now I have to sleep sitting up because if I try to lay flat it feels like all my organs are comming up into my throat. I am up and down all night long. I have been sleeping on our couch since last year because I do not want to keep waking up my husband. Thank you for writing please take care. Nsestes

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I reread my post today and I am so sorry for being so negative. I guess this post just hit a nerve with me how the doctors do not validate you when you tell them something is wrong.

I usually am more positive but rereading my post made me think how it sounded to everyone.

So sorry. Hopefully today will be a good day.

Linda

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thanks for the response and you are a clone of the disaster that happened to my wife with the nissen, she had a G/J tube inserted in Dec and it seems to have lessened the need for pain meds and somewhat the nausea meds but not totally, the tube does allow for nutrition, hydration, and taking meds, yes, the surgeon ruined her previously healthy life, she also heard this damn stuff about the pain and nauseau is in her head, we have been cross country looking for remedies but have come up short, having one's stomach removed was a consideration but removing any organ is extreme so we went with the tube, the nausea is her problem and she currently takes phengran (spelling?) and zofran, she continues to pursue any suggested solutions but none have come by that worked, what do you do for your nausea, she has been through accupuncture, botox shots, nerve blocks, hell everything, but we are still open to suggestions, it is a shame these docs get away with this butchery, so let me know and let's share information

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Well, I won't repeat what you said back to you because both of us have heard it all before. Concerning the feeding tube, it takes my wife at a minimum several hours to complete, she turned down the rate of the feed, she takes phenagren and zofran (spelling?) for nausea and they give some relief, have you found any better solution? for pain she has been on oral morphine for several years and that seems to work well, the pain docs were asses and had no problem getting her on drugs then accused her of being a drug addict when she only took what they gave her, we finally got another pain doc who is great, we are in Denver, the surgeon who screwed her up we find out has messed others up but suing is impossible, my wife's G-J Tube works well for hydration, nutrition, and taking meds, it is particularly goods for meds as her stomach is so screwed up she didn't digest pills, she crushes the meds and injects them into the tube, we tried to get the tube for 3 years and when she was in the hospital in Dec we asked a specialist there about the tube and he asked why we didn't get is sooner (the damn gastro docs had refused for years, I could scream and of course more), it is amazing how many have had this surgery and can't work and then can't get disability, one has to be very careful to document all med history and mental history with a balance, my wife after years of paper work just got on disability and she kept great records, if you can share any new remedies or things that work for you please share that information as I will with you and others, the tube for now is where we are at with its benefits, there is also a theory about the gall bladder being a problem if one still has reflux and stomach problems without ingesting food, some have tried removal with success other not, ok, take care and if you have to vent, you can always write to me

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hey, don't worry about expressing your feelings in this forum, that is part of what it is about and we all understand, yes there are good docs but so many are self absorbed, arrogant, and want to practice medicine in a production line mode, it is almost impossible to find a doc to take on a difficult case especially when they know another doc screwed up on the surgery, believe me i know this from experience, hang in there and keep venting and also sharing any new information

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we visited the U. of Chicago, mostly got the same ole' evaluation and learned nothing over 3 days of tests, consultation, etc. like most other docs they prefer to do things in a routine manner and their level of intellectual curiosity concerning the very difficult cases is limited, if not, shows a disinterest, we have been from John Hopkins, Temple Univ, Mayo Clinic, etc from coast to coast and they all know a nissen can and does ruin peoples lives but they are all protective of one another so getting a solution that requires an original cause is impossible, those who are fine after the operation, good for them but high numbers of victims are born everyday, take it easy

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You do not ever have to be sorry for telling the truth. To bad these doctors can not tell the difference between the truth and lieing through their teeth. Infact I bet they would not know the truth even if it came up and bit them in their ass. After going back and remembering all that I have gone through it has been the same from one doctor to the next it is better if it is some bodys elses problem. That is why they are always refering you and me to some one else. Simple truth they do not want or they have no clue what they are doing nor do they care. But I have found a wonderful doctor in NH. From the moment this man looked at my tests all he could do is ask why they let this go on for so long and never tryed to help me. And for once out of the past 3 years since I have been going through this I have some one who cares and validated every thing I have been going through. And he was not afraid to say that another doctor really screwed this surgery up. After my appointment my husband and I were taking our 2 hour ride back home, we looked at each other and said could you believe this doctor? And it wasn't a 15 to 20 min appointment it was an hour and forty five min and he still wanted to talk to us. He wanted me to understand what had happened to me and that I was not going mental. That I had a real problem that was going to be with me the rest of my life. And when I told him that the last doctor I talked to and just happened to be the moron who did the surgery. How he tried to tell me that I was just suffering from constipation and that I might have a blockage. This was all my pain and why I could not eat normal any more. He just sat there and looked at me with disbelief. " You have got to be kiding me." He said. Nope! That is what he told me. He looked through my testing and said that the blockage this moron was talking about was all the barium still sitting in my intestines that I had earlyer that spring. And again he said if he had done the motility test for either the first surgery or the last one he would of known not to of given me the barium. But this is how it is he said , Just keep passing the buck and get them off your door step. If any one would like this doctors name I would love to refere him. And even when he told me there is nothing he could do to help me he still wanted to make sure I would get some help to get my pain under control. And one more thing he wanted me to know was how unsafe it would be to try to undo this wrap. He was very clear that I could die right there on the table before they could be able to stop the bleeding. He said I have seen how much scar tissue and other problems have come up with trying to do this. So please do not ever try to do this. And he was very happy to hear I never want any body to touch me again. I have tried lots of stuff for the nausea. I was also told to try the pot pills. Well please keep your comments coming. We all have a lot to learn from each other and if I can save at least one person from going through what I have and continue to go through I will be a very happy lady! Talk to you all soon. Nsestes

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Sounds like your doc and mine are really on the ball. One doc wanted to take my stomach out too at a major university. I scheduled the appt and everything, but when I was leaving I looked down and his tennis shoes were really dirty. I know this sounds crazy, but I went home and cancelled the appt.

Thankfully I did this because my doctor now said it would have been disastrous and I would probably have to be on TPN now instead of j tube feeds.

So now I always look at the doctors shoes (LOL).

It is just so sad that we have to shop around like we do for a good doctors with being so sick, etc. It is bad enough getting up and dealing with the nausea everyday but then to see a doc who acts like it is not happening.

For nausea I am now just on Zofran 8 mg ODT (the 4 mg doesn't work as well for me) and if the nausea doesn't go away I take a Tigan.

when I was working I would get up every morning and take the Zofran, Tigan and Compazine all at one time. The doctor said this combination would sometimes help. The think is it is so sedating. Since not working usually the Zofran will kick it to a tolerable level.

Phenergan makes me so hyper and my heart races but I heard a lot of people like the drug.

Thank you for everyone understanding my negativity.

Hope everyone has a good tummy day today.

Linda

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While this site is incredibly helpful and beneficial, it is so sad to hear so many people suffering, all with the same symptoms. The search for good physicians who will understand us and validate our symptoms is so hard. The surgeon who screwed my nissen fundoplication actually told me to "doctor shop until I find one who would believe my symptons"!! Unbelievable. I feel like we are all "throw-away patients". Physicians don't want to admit they make a mistake and don't want to admit they can't help. Instead, they turn it back on us, our lifestyles, our diets, etc. I did get my wrap taken down by the Mayo Clinic in Jacksonville, FL. Unfortunately is did NOT relieve my symptoms. They found the esophagus was twisted and scrunge from the original surgery and the scar tissue was like a pound of ground beef. The surgery took 5 hrs. Because I was under anesthesia for so long they decided not to try redoing the wrap. I know this is a very risky surgery but I was so desperate I took the risk. If any one is thinking of having their wrap taken down please be aware this is a VERY risky surgery. I can only speak for myself - but since the take-down did not alleviate my symptoms I would advise everyone to be very cautious. Make sure you talk to your surgeon, ask all the questions you can, and try to get specific information about the surgery and likely outcomes (like will your symptoms be alleviated). Ask the surgeon how many take-downs he/she has done and what were the results. Review all the risks involved. If your surgeon just causually addresses any of your questions or the risks of the surgery, walk away and think about it.

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hello again, the pot situation, my has tried pot and it has helped to a limited degree, we have legal medical marijuana in colorado, not that i was concerned the so called law on this, but like everything else it is expensive, what state are you in by the way, my email is denver88 (and i have to break it up as they don't want email posted) @aol.com to communicate about things directly and to share information about any ideas for nausea and pain, thanks for replying

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I am so sorry to hear of so many problems people have had with this procedure. I am doing really well. Surgery was last Wednesday, and I was told not to eat meat or bread products for the next two weeks. I thought I was constipated at first, but that has resolved. I am having no pain.

For me, it seemed to be a necessary procedure. I have acquired bronchietesis and had aspiration pneumonia twice in less than one year. Without the surgery, I may well have gotten pneumonia again and since the second pneumonia took me longer to recover from, it was advisable for me to have the surgery. I might well die if I get pneumonia again. I don't want to risk that.

So, I am hoping I don't have any problems. I am home for 2.5 weeks and then back to work. I see my gastro doctor in about one week and the gastro surgeon on April 26th.

Kesa

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I have sent you an email just to see if I got the right one. I will continue then on our discussion about the pot pills. Hope you and the wife are doing well today. Nsestes

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yes isn't it amazing on the amount of human beings they have screwed up and continue doing. I had a doctor who said pretty much the same thing about finding an other doctor to believe my systems. I looked at my husband and said he is a very lucky man. And the doctor said why did you say that? Well Dr. Jeckle if this was about 4 years ago before this surgery you would be picking your self up off the floor by now. What is your husband going to hit me. No back then I could of taken care of myself and you would be the one taking your meals through a tube instead of me. Yes he left and I have not had the pleasure of going back to this half wit. But we all have gone through having to sit through just one more doctor looking straight through us with no answers and not a shread of any morrals to say I don't know how to help you, but let me try and find some one or some thing for you. It has been a very long road I have walke down. And the answer is there is nothing they can do for us. The damage is done. But it would be wonderful to tell our stories and warn others who are even thinking about having this done. To show them what our lives have turned in to and what it has done to our kids and other family members whos hands are tied to help us. Some one needs to go on to a talk show or find some one with some inteligence to listen to us. This surgery needs to be stopped, before there are any more victims. And that is what we are victims. We were all sold a bill of goods. "Don't worry I can fix it or your chances are very low for some thing to go wrong." Yea right! I just can not stand the thought of having an other person join this group who has become just yet an other victim of the nissen fundoplication. I just wish it could be stopped. I guess that is why I never became a doctor I care way to much for the other person. And no what the word regret really means.

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I was told that I needed to be sure that I was really willing to do this as once done, it cannot really be undone. I was also told to make sure I had it done by an experienced surgeon, and I made sure of that too. My surgeion does pretty much this and related surgeries only and has been trained in Italy and San Francisco and is now the head of the gastro surgery department where he has been for over 10 years. I researched him thouroughy. Believe me, I was concerned as my mother died elsewhere from a botched gastro procedure-- a simple colonoscopy.

By the way, I am now one week post op and doing well--no pain, no bowel movement problems, no nausea. I really want a Maid Rite though but can't eat meat for another week.

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I underwent the lap nissen fundoplication in early Nov. 2009 for severe GERD and hiatal hernia.... 3 days post-op I was in ER for uncontrollable constant vomiting and abdominal pain. A CT scan showed I had a possible volvulus with fluid buildup and that evening I was having emergency surgery to undo the wrap and remove a part of my stomach that had died from lack of blood supply due to it twisting. Since then I have been having multiple symptoms (abdominal pain, nausea, vomiting) and had another CT scan, Upper GI and an EGD to which my diagnosis now is Gastroparesis. I still have reflux and regurgitaion. Has anyone out there experienced a "stomach twist" that involved losing part of your stomach due to this procedure? I am miserable and have also developed secondary anxiety. I would be very interested in talking to others in a similar situation that I am.

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I'm sorry to hear of the problems many of you have had. I had Nissen Fundoplication done 8 years ago, and it changed my life FOR THE BETTER! I have never had a problem, and prior to the surgery I spent five months TRYING to sleep upright. My surgery was performed by Dr. Barry Gardiner in San Ramon, CA. Dr. Gardiner has a great deal of experience with this surgery, and I was enrolled in a study at UCLA post-surgery.

Hope this may help someone. The pain I had before surgery was unbearable.

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