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what is up with the large amount of Nissen surgery failures??? Part 1 of 2

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Posted 1/18/2009 8:30 PM (GMT 0)
I just want to ask -- why are there a lot of Nissen surgery failures out there??  i mean - isnt this supposed to be the big daddy of gerd solutions??

is there anyone on here that thinks they know why people end up worse than they were or sometime in the future the symptoms return?  ( i know that the wrap can undo -) but what are the other issues at hand that make the surgery counter productive??

how can one reduce their chances of failure -- besides finding an experienced Surgeon?

and is it true, that if one does not repsond to PPI's that the surgery will be just as useless.. i truly hope thats not true..  which in my mind doesnt make sense - but thats the rumor..

its really disheartening to read stories of people ending up back where they were prior to going ahead with a major surgery... its really sad and im thinking there should be another advancement in Nissen surgery if the success rate seems to be mediocre

 

Post Edited By Moderator (stkitt) : 4/21/2009 10:44:56 AM (GMT-6)

Posted 1/18/2009 9:21 PM (GMT 0)

Hi saddaze.

I totally understand your concerns about the surgery. Are you going to be having the Nissen done?

I'm one of those Nissen lap failure stories and I'm going in tomorrow am for my redo surgery.

My 1st lasted only about 3-4 months. As for my experience I would say a combination of a lack of experience in Nissen surgery's on my doctor's end and while in the hospital a lack of proper after surgery care would have aided in my failure.

The doctor I have for my 2nd has done numerous nissen laps and repairs. She feels the first doctor overlooked things and basically did a botched surgery with out blantenly saying those words.

I have Barrett's, my LES is destroyed, off the charts reflex, and a medium - large paraesophageal hernia with a now failed nissen.

For those few months my lap was intact I was having no gerd issues and it was so wonderful to be able to eat things and not suffer and be able to sleep a good nights sleep. That's part of the reason I do not hesitate to have this surgery done again.

As with any surgery there are risks and the Nissen is included. But when your at the point that you have suffered so much you just want the pain to end and that surgery can give you that. I think there are far more success stories then failures.

Before the surgery I wasn't having luck with the PPI's and I did have relief after the surgery so at least for my case that's not true.

While yes it is a surgery and not to be taken lightly it isn't as bad as you would think. The site of the incisions wasn't all that painful to me, the healing went rather smoothly and quickly and in the end it was totally worth it.

I hope this answers some of your questions and puts your mind at ease.

Teala

Posted 1/18/2009 9:44 PM (GMT 0)
thanks Teala for your input.. i wish you great success the 2nd time :)

Iam not slated for nissen.. i still have to go through the battery of tests that will be instore for me. I just hope they can all be done before im laidoff... thats the other life worry i have now which is not helping my GERD- gastritis issues currently
Posted 1/18/2009 10:43 PM (GMT 0)
saddaze; I would say my Nissen has been a tremendous success. My quality of life since the surgery has been so much better than what I has before.

Is the surgery perfect? no, not at all; are there drawbacks and pitfalls?, absolutely!, but this is very different than removing an appendix or performing an open reduction on a fracture; those procedures deal in absolutes and this does not, hence the wide spectrum of results.

The formula for this surgery is the right patient + the right surgery + the right surgeon = success. Any variation from that formula and you're going to have a problem. Too many patients had this surgery in the past because it was considered the latest, greatest thing; add to that the number of surgeons who felt that the procedure was a simple one to perform and you ended up with an enormous number of failures.

The right surgeon will require that the right patient to have a great number of tests to prove that reflux is the issue and that the LES is the problem and that the Nissen is the correct surgery. The right patient must perform their own tests; mainly making sure their surgeon is the best qualified to do so. In my case, that meant driving 4 to 5 hours to Cleveland (from Michigan) to have the best surgeon. Having any old doc-in-a-box do the surgery and you're asking for trouble.

Even when all of the criteria have been met in the formula, you can still have problems; many that are not the fault of the surgery. I had very specific post op instructions...no strenous training for 6 months, no lifting for 8 weeks, no this, no that and I followed them all. What I never counted on though, was a co-worker coming in to work saying she had food poisoning when in fact, she had an intestinal bug...7 days later, I awoke in the middle of the night with diarrhea and the dry heaves. Eventually, Mother Nature found a way and I did actually vomit...now we're checking to see how much damage I may have done to the repair....unfortunate, but there it is just the same.

The people I know who have had this surgery, are, for the most part, very happy that they did. The surgery has freed them from the chains of a condition that can cause extreme problems. Their lives are better, stronger, happier.

Your question about PPI response as it equates to surgical success? My experience finds that the surgery will very often succeed where PPI's have not; the anatomical function of the surgery is to wrap the top portion of the stomach around the esophagus, in essence to strengthen and support the Esophageal sphincter. It allows food to come through but not go back out. PPI's are designed to stop the creation of acid in the stomach; this cannot be stopped completely and whatever is in the stomach still has the ability to rise up through the dysfunctional ES up into the esophagus. So the problem isn't necessarily the med, its the functional (dis)ability of the esophageal sphincter.

A long response, I know, but I hope it helps.
Janice
Posted 1/18/2009 11:25 PM (GMT 0)
thank you janice :) your reply is very helpful and will be of great resource to me when and if the time comes i need to make this decision if it becomes an option -- so bottom line is that the LES has to be in a bad way for NIssen to work.. my guess is that if one is having bad reflux than it must mean that the LES is not working properly..

good to know.. im going to have my first GERD test within the neext couple of weeks ( knock wood that i still have my insurance for a few more months..i will know which way the wind is blowing as far as my illness and treatment sway
Posted 1/19/2009 12:19 AM (GMT 0)
I would like to respond to this post.

I had the nissen fundo done last september, and I will say it did not help my condition at all.  The 2nd day after the surgery when I was in the hospital I was already having heartburn and reflux and I hadn't eaten anything in two days.  But I know for a fact there is something really really wrong with the motility of my esophagus and stomach.  Everytime I swallow it comes back up because my LES stays open too long after I swallow, and it opens at diff times throughout the day.  Even having the wrap did not help because I already had a motility problem.  This was also confirmed by an esophageal motility test I had done, manometry.  I think the wrap helps if u already have a normal functioning esophagus and stomach.  I also have gastroparesis so that probably contributes to the disease.

-Gabby

Posted 1/19/2009 12:35 AM (GMT 0)
I'm sorry Gabby, I hope you find some resolution; I know I have a motility problem, but I don't believe its as severe as yours. I guess too, I don't have clear knowledge of what entails the term motility. In my case, motility is the incomplete muscle contraction which propels the food down toward the LES and into my stomach. I only vaguely remember them mentioning anything else.

I wish I could help in some way!
Janice
Posted 1/19/2009 12:48 AM (GMT 0)
Thanks Janice,

     I wish someone could help me too cause I dont know how to fix my body or cure this disease.  Ive had an esophageal motility problem for about 4 years now, gastroparesis for 5, and reflux disease for 3.  I am really really suffering and no one seems to be able to help me at all.  I hate this so much. 

-Gabby

Posted 1/19/2009 1:45 AM (GMT 0)
Gabby, hugs, hugs, hugs, hugs, hugs!!!!!
Janice
Posted 1/19/2009 4:17 PM (GMT 0)
gabby -- iam so sorry to hear about your experience!!

so am i to believe that if you have a motility ( LES) problem than this surgery is of no use? if thats the case than WHAT is the solution for someone who has a defective LES - espohagus?

i mean - wouldnt it seem plausible that if someone is ecperiencing heartburn reflux for 24/7 that the LES would eventually be destroyed?

does anyone know what they do incase the surgery would be a failure due to poor motility - and lack of closing of the LES? at that point they should just eliminate the whole thing and reattach/realign the stomach and throat and live without it.. IMO but im an extremist and looking into this route - cause surgery (nissen) appears to have a small LONG term success rate in comparison to the number of people who are getting snipped...

this is so complicated!! --

Gabby -- did your surgeon warn that if your motility is shot than one cant have surgery cause it will not work? or were you given false information concerning your situation...?
Posted 1/19/2009 5:54 PM (GMT 0)

Saddaze,

     It took me 4 different GI docs before anyone would even consider doing the nissen on me.  Since I had gastroparesis, no doctor would send me to the surgeon, because they arent supposed to perform this surgery if you have gastroparesis because it could make your problem worse.  I was at my absolute witts end because of the horrendous 24/7 reflux coming up into my throat and no doctor could help me.  I finally found a doc that sent me to the surgeon.  The surgeon told me that since food was not getting stuck and was able to go down ok that the surgery wouldnt be a problem.  Well, food never gets stuck, it just comes back up after I swallow it.  Sometimes it takes me 5 swallows to get it to stay in my stomach.  So I went to have the surgery done and the very next day while i was in the hospital reflux was coming up.  I knew rght then that the surgery had not worked, even though the doctor told me that was just a symptom of the swelling.  I didnt believe that for one minute.  I knew it hadnt worked.  Once i was healed from all the swelling I was still having reflux after everything I ate or didnt eat.  I went back to the surgeon and he assured me he did the perfect wrap.  I went to have another barium swallow test done to see if the wrap was indeed intact and to see if food was going down ok.  Well, the test showed that it was normal and evrything was intact.  Normal, yet I was still having awful reflux, and food was still coming back up after I swallowed, the same symptoms I was having b4 the surgery. 

Now i am stuck and I dont know what to do or where to go nfor help.  What other options are there for me?  To take my stomach out?  I just dont knwo what to do and I can't ive with the pain anymore.

-Gabby

Posted 1/19/2009 6:14 PM (GMT 0)
Gabby

I feel so bad for you -- but there has to be a solution.
Iam very new at this hellish ailment .. and from what ive been reading --
gastropareisis and gerd do go hand in hand (yes?) if your food is not moving out of your stomach in a timely manner than this causes gerd becuase the acid has increased to move the food that is stuck ... so im going to ask a dumb question -- have any the motility drugs worked for you at all -- like bentyl or reglan ( or whatever the gastroparesis drugs you are/were on>) ironically PPI's contribute to slower digestion too -- so that cant be too good for gerd either.. but thats another post.

what have your doctors said is the next step? there has got to be someone or something that can offer a relief to your situation! have the surgoens said that they can cut around the areas that are affected and make a new pattern for your digestive system? i know that is a harsh option but -- if refluxing is that bad maybe looking into this may bring some quality of life back ? what is the underlining reason for your gastropareisis?? do you have diabetes? if so is that controlled?
Im sure i dont need to ask if your eating habits are strict -- like smaller meals and etc..



& you had mentioned that your LES was bad -- i imagine thats due to the gastroparesis?

"But I know for a fact there is something really really wrong with the motility of my esophagus and stomach. Everytime I swallow it comes back up because my LES stays open too long after I swallow, and it opens at diff times throughout the day. Even having the wrap did not help because I already had a motility problem."

what are the typical procedures for gastroparesis and LES dyfunctions? and have you tried those options too?

im sorry if im asking a lot of redundant questions Gabby -- im trying to help ya figure out whats going on in my own novice way -- and im not too sure I wont have the same problems youre having cause - i may have the same if not similar symptoms right now.. thanks for your input
Posted 1/19/2009 8:08 PM (GMT 0)
Sadaze,

    Hellish ailment is right, thats for sure.  Not everyone with gastroparesis gets gerd.  I had gastroparesis for 3 years before I developed GERD.  I dont even like calling it GERD cause honeslty I dont know what the heck disease I have.  Before I developed Gerd, food would litterally sit in my stomach for 7 to 8 hours and not digest.  I got gastroparesis from anorexia years ago.  It damaged the vagus nerve which controls the motility of my digestion.  The motility drugs offer my very little help, if any.  I have tried both domperidone and Reglan, but i dont think either one of them helps much at all.  My doctors dont know what to do or how to help me.  I am schedualed to go back to the surgeon soon and I will tell him about the troubles I am having - to see what can be done to help me because I am suffering so much.  I asked the docs about a feeding tube and they said that was out of the question.  If they wont give me a feeding tube I doubt they would even consider taking my stomach out, which I have seriously considered.  You'd have to have a doc that would actually approve that, and if your condition doesnt warrant any reason for a stomach removal i doubt they would do it based on GERD.  You'd have to have a pretty serious stomach cancer or something for them to actually take a body part out.  Thats is a major surgery, and who knows how your body would react to u not having a stomach.  If your LES is not functioning properly u could probably still get reflux even if you didnt have a stomach.  Bile can also reflux is your LES is bad.  I actually researched this on the web and Ive never heard of doctors taking stomachs out due to GERD.  In a gastrectomy they cut your stomach out and sew your esophagus to your small intestine. 

My eating habbits are very strict.  I dont eat junk food ever, and mostly just drink liquids.  My throat is so burned from the reflux I cant much eat anything I am in so much pain.  I dont know why my LES is bad, I am pretty sure its from the gastroparesis.  I think its nerve damage and over the years it traveled up from my stomach into my esophagus.  Because when I first got gastroparesis I never ever had gerd or regurgitation.  Now it is constant all day everyday.  It sucks.

Unfortunately there really isnt much that can be done for a dysfunctional LES other than trying the Nissen Fundo.  Ive been researching my ailment for years on the net trying to figure out what to do to help me.  I honestly dont know what else can be done.  I am afraid the reflux has burned my LES bad to where it probably cant even close anymore.  What they do for that, I have no idea.  I wish I could find an answer and a relief for this suffering I am in.

-Gabby

Posted 1/19/2009 9:36 PM (GMT 0)
it doesnt make any sense ? ! how can they not be aggressive with your disorder - if the only thing its going to do is lead to cancer anyway. if left untreated - refluxing is not good -- these F%%$# doctors ! your LES needs to be either closed off completely or re-sectioned -- being that either acid or bile can reflux -- the fact that you are refluxing this bad needs to be addressed-- what about other surgeries like esophyx or other specific LES procedures? which is new but it may tighten the sphinter? its your body if you want it cut it out or modify it who are they to say no if all else has been done!

they have no problem prescribing organ altering drugs that in the long term harm us more than help us - but they cant bring themselves to relieve someone of their non functioning organ -- really nice - what are they waiting for -- for you to reach a breaking point of desperation and have you hurt yourself!!??? *** ( which i truly hope this is not going to be the case GAbby! please stay strong -- im going through something very similar and i know something of what you are going through.. )

do you have the means to go to the clinic in cleveland and other places that everyone talks about here?
maybe seeing the best of the best - a place where they specialize in GERD ?

theres got to be 1 person in this world///
Posted 1/20/2009 12:11 AM (GMT 0)

Saddaze,

       You would be amazed if you saw the huge binder I have of all the tests, proceedures, and doctors I have been too.  I've seen 5 different GI specialists, 1 surgeon, 1 acupuncturist, 2 holistic health doctors, 3 ear nose and throat doctors, and I even went up to Shand's clinic to see the specialist they had for motility disorders.  I'm telling you I've been  through the mill with doctors, and no they will not just take your stomach out if you want them too.  I know because I have been through this before.  You know what they say?  "Here, take some xanax for your anxiety", or here, "pop some zoloft to help you cope with the pain."  Most doctors dont help you figure out why you have this problem, they are pill pushers.  If their pills dont work, then they prescribe anxiety or depression meds, cause thats the only thing they know how to do.

I was basically in tears at one of my doctors appointments and told him I couldnt take the pain anymore, please, do someting to help, a feeding tube, anything!  And all he did was tell me to eat 3 meals a day and take some xanax for my anxiety.   I was at the end of my rope and desparate for any type of help or relief.  No one even understands my affliction, the doctors told me they've never even heard of my symptoms before.  I guess i must have some weird mystery disease that no one can figure out or help treat.  Of course I am going to have anxiety, who wouldnt after looking everywhere for help and not being able to find any answer.  I racked up so much money on my insurance because of this I thought they were going to drop me.  I litterally have gone into major debt because of my illness, that is not something I can afford to do again.  Most places require money upfront before they ever perform any test on you.  I've been looking for some type of aid to help me finacially but that has been extremely hard to find since I do have insurance already.  If I drop the insurance I wont be able to afford going to doctors.  I can't seem to win no matter what I do.

Its hard for me to stay strong.  I realy dont know what to do anymore and am really loosing hope of ever getting well.

-Gabby

Posted 1/20/2009 12:46 AM (GMT 0)

Gabby,

I am so sorry you are in a tough place and you know I support you.  ((((((((((((((((((((((HUGS))))))))))))))))))).

Don't give up, and remember you have your family here to talk to always.

Gentle Hugs to a wonderful person.

Kitt

Posted 1/20/2009 12:52 AM (GMT 0)

Saddaze,

"If a large (>3 cm approximately) hiatus hernia is identified or there is abnormal pH analysis in the upright position preoperatively, the surgeon should be guarded about the long-term outcome, and patients should be advised accordingly." Reference: Department of Surgery, University College Hospital, Galway, Ireland Department of Academic Surgery, Trinity Centre, St. James Hospital, Dublin 8, Dublin, Ireland

 I would discuss with your surgeon anything that may be a reason for why your surgery may not be successful..............

Also keep in mind a lot of people with successful surgery do not go around talking about their surgery as they feel good.

I am not sure if there is one correct answer or a set of reasons for why some surgeries fail.

Take care.

Kitt


Posted 1/20/2009 6:58 PM (GMT 0)
hi Kitt thanks for your reply :)
Quick question though... if you are not a candidate for the nIssen becuase you prove abnormal PH upright and /or your LES is so messed up from damage -- and one is still extremely symptomatic from GERD -like problems swallowing and 24/7 heartburn and PPI's do not work... what the heck is the next step?
Posted 1/22/2009 4:31 AM (GMT 0)

saddaze,

I wish I knew the answer for you.............There has to be an answer so please do not give up............keep looking and keep advocating for the best care possible for you.

You deserve to have a good quality of life and right now you are suffering. 

I wish you peace.

Kitt

Posted 1/22/2009 9:37 PM (GMT 0)

You know, I was watching the news the other night (abc in Houston Texas) and they were talking about an experimental surgery (it's already been approved in Europe just experiemental in the US) for GERD.  It is called stomach reshaping.  The surgery is conducted without actually cutting you open.  All the surgery is done via going in through the mouth.  The stomach is literally scoped and reshaped.  Afterward the patients have reported some minor sore throat and chest tightness which goes away in a few days.  The GERD--is gone.  It will be interesting to see how much this surgery actually helps GERD sufferers.

Marburg

saddaze said...
Gabby

I feel so bad for you -- but there has to be a solution.
Iam very new at this hellish ailment .. and from what ive been reading --
gastropareisis and gerd do go hand in hand (yes?) if your food is not moving out of your stomach in a timely manner than this causes gerd becuase the acid has increased to move the food that is stuck ... so im going to ask a dumb question -- have any the motility drugs worked for you at all -- like bentyl or reglan ( or whatever the gastroparesis drugs you are/were on>) ironically PPI's contribute to slower digestion too -- so that cant be too good for gerd either.. but thats another post.

what have your doctors said is the next step? there has got to be someone or something that can offer a relief to your situation! have the surgoens said that they can cut around the areas that are affected and make a new pattern for your digestive system? i know that is a harsh option but -- if refluxing is that bad maybe looking into this may bring some quality of life back ? what is the underlining reason for your gastropareisis?? do you have diabetes? if so is that controlled?
Im sure i dont need to ask if your eating habits are strict -- like smaller meals and etc..



& you had mentioned that your LES was bad -- i imagine thats due to the gastroparesis?

"But I know for a fact there is something really really wrong with the motility of my esophagus and stomach. Everytime I swallow it comes back up because my LES stays open too long after I swallow, and it opens at diff times throughout the day. Even having the wrap did not help because I already had a motility problem."

what are the typical procedures for gastroparesis and LES dyfunctions? and have you tried those options too?

im sorry if im asking a lot of redundant questions Gabby -- im trying to help ya figure out whats going on in my own novice way -- and im not too sure I wont have the same problems youre having cause - i may have the same if not similar symptoms right now.. thanks for your input

Posted 1/22/2009 10:05 PM (GMT 0)

Hi Everyone,

For all of you seeking another method for curing Gerd, there is the Hill Posterior Gastropexy which is another surgery but totally different than the Nissen.  There is no wrap to slip over time.  It has an 85- 100% success rate.  I had it back in Aug and I am  free of heartburn.

The Hill repair, as it is called, is only done in the Northwest around Portland and Seattle so this is a big disadvantage.  I actually flew to Seattle from Florida to have it done but it was totally worth it.  So, it's not out of the question if a person wants to make the trip to have it done.  The top doc is named Dr. Ralph Aye at Swedish Medical Center in Seattle.  There is also a Dr. Robert Wright near Seattle who is also excellent. He has an excellent website.   These are the top two.

They will not do a Hill on anyone with severe motility issues but minor ones are Ok.  The Hill is also good for large HH's. 

I hope all of you suffering will find the answer soon to beating this horrible Gerd.  Take care.

Posted 1/23/2009 4:55 AM (GMT 0)
Well I'm another one of the failed ones. I had my wrap done in 2000 and with in a year was back on meds and suffering. In the last week it has gotten so bad that I can't even lay down on my wedge and if I tip my chair back to far I wake up gasping for air. I've lived with heart burn nightly for years now. I just get up and take stuff and then back to bed and up again 2-4 hours later for more antacids. I am told every time they go down that my wrap is in place and still tight. I have gastritis on top of the GERD. I had the manometry test and acid reflux done 2x before my surgery

and I ended up getting the motility problem after my surgery. I have to suck on a piece of hard candy and swallow many times after eating or drinking. I have things get stuck like pills and food. Some foods are worse that others. I can't eat unless I have something to drink or it will just sit in there and hurt. I've thought about telling the doc just to close off my esophagus completely and feed me through a tube or remove my stomach. I've had heartburn since age 14 and am now 46. I have developed asthma as a result of the reflux and the lung doctor is really getting on me about taking care of it. He keeps sending me back to the GI doc. I have a EGD and bravo scope scheduled for Feb. 25. I don't know what they think they are going to do any way if they do find acid is coming up like I keep telling them it is since I have already had the surgery. My throat is so swollen from all the acid that I can't even take my supplements for my heart any more as they get stuck. I have problems swallowing my sucralfate. Thank goodness it tends to melt in water so dissolves where ever it gets stuck in there. Well I am off to another night in my chair to try to sleep. Barb

Posted 1/23/2009 12:15 PM (GMT 0)

Hi all! I know, I know, I haven't been here for ages. I thought I would give you my input on the Nissen.

I had mine in April of last year. It took me 6 months to be able to eat solid food and I was still having the burning in my throat. I still had chest pain too but the burning in my chest was gone and no waking in the night gasping for air. I can eat just about everything now but because I have motility problems I am still having trouble at times. Sometimes the food won't go down ( I had a week of that recently) so I go back to easy to swallow foods. I am also still getting spasms down my esophagus into the wrap, which are very painful. BUT I am a lot better than I was before the op. The burning in my throat has finally gone. My asthma (caused by the reflux) is MUCH better.

The recovery has taken much longer than they said it would and I am still seeing improvements now. Hopefully this will continue. I still get a lot of congestion so I take 1 x ppi a day.

I was beginning to despair back in October last year so I made an appointment with a reflexologist. It's the best thing I ever did (after the nissen!). I had gall bladder issues and no longer suffer with that now.

I was very interested to hear about the new op (for future reference).

I hope the peolpe who have had failed ops will find a way to feel better soon. It seems that just doing one thing won't work for a lot of us and you have to have multiple remedies going on together. It is just difficult finding the right mix. I think I have been through most of them! smilewinkgrin

Posted 1/24/2009 5:39 PM (GMT 0)
Did you develop the motility problem after the surgery? I was tested for that before and they told me if I had it they wouldn't do the surgery. They didn't tell me I could develop it from having the surgery which is what happened to me. I have to suck on a piece of hard candy to swallow a bunch of times before I lay down or any thing left in my esophagus just comes right back up again. Now I have horrible heartburn again any way so it was a waste of time and I have this added problem now on top of it. I too wish they would just take out my stomach or shut it off completely and put in a feeding tube. I don't know how bad they think it has to be before they do any thing about it. My aunt has barrets esophagus and that's not something I want to end up with, but it is inevitable if they don't do something. I can't believe how they shove psyc meds at you when they can't figure it out or you get upset about what your going through. Well I am off to scrapbook the rest of the day. It helps to do something to take your mind off the pain. Barb

Posted 1/25/2009 9:26 AM (GMT 0)
I had the motility problem beofre the operation.

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