Second Nissen Failure... what are my options?

Posted by sisypheanpatient @sisypheanpatient, Mar 3 10:45am

First, a quick summary:
I had my first Nissen 14 years ago at around age 22. It lasted maybe 6/7 years before I started having serious issues again. I spent a little over 2 years with various gastroenterologists dealing with that and eventually went to the Mayo Clinic in Minnesota for a more holistic analysis.
I eventually had the Nissen repaired (with mesh) back here in Austin, TX when I was around 30. Now, six years later, the problems are back.

I'm 6'1", 200lbs, and have a body fat percentage at around 12%, so I'm a healthy weight. I exercise and eat well. I've been on heavy PPIs for the past couple months with no beneficial results, just as before. PPIs tend to make me a bit constipated and gassy, too, which only seems to exacerbate my pains.
I had a barium swallow last week and an endoscopy two days ago. The endoscopy showed a 3cm hernia (Hill class III, apparently). I don't think that's a particularly large herniation, but it definitely feels like there's someone pinching my lower esophagus all the time, even if I'm just drinking water or sitting down.
I'm still waiting to hear back from the gastroenterologist, who seemed to really want this to have been EoE because that's his specialty and he seems to think hiatal hernias aren't that big of a deal. Honestly, it's a bit frustrating that he isn't focused on that, but I've had previous doctors who look at issues like they're still working on their graduate thesis. Fortunately, there isn't a strong indication of eosinophils in the esophagus to be suggesting that's the key issue.

What I want to know is what peoples' experience is with repairs are and, more specifically, if there are alternatives I should approach with other medical professionals. I've read some articles in medical journals that show the LINX procedure has been used on failed Nissen operations, though there is a lot of debate on the use and efficacy of it for a failed Nissen with potential scar tissue. It seems like the LINX would at least create a buttress around the esophageal sphincter that would help further prevent it from herniating over the diaphragm.
I've also read anecdotal evidence of EsophyX/TIF procedures being used for repair of a failed LNF, though they don't have the longevity that a Nissen apparently does. Given my experience with the longevity of my wraps, a less-invasive option at least sounds like it wouldn't keep compounding the issue if it needed another revision. I imagine that wouldn't fix the diaphragm opening if it's problematic, though.
I'm not sure what the mechanical failure of my wrap is (I take it it's either slipped or the entire wrap may have herniated?) so I don't know if there are different approaches depending on the specifics of that.

So… Has anyone had a LNF repaired by other means than a complete LNF redo? Are there less invasive methods of correction that are practiced? My fear is that gastro doctors will always try and medicate the issue and will be reluctant to refer to a surgeon (based on my experiences of being in limbo for a couple years in similar situations), but I'm also nervous that some surgeons will be too unfamiliar with things like TIF/LINX/EsophyX/etc to consider them when they may be a viable option.

Sorry for the long post.
Thanks, everyone!

@sisypheanpatient If you are in Austin.. maybe its a good time to get some good water and head back to Mayo MN… I had a failed Nissen (done in Central Iowa) and Dr. Halland at Mayo MN diagnosed it and gave me a way to cope.. He is an esophagus specialist…You need to check though there may be Minnesota GI Doctor visiting in Mayo Scottsdale AZ this March… I had a telephonic consultation with Dr. Halland in MN just a few months ago.. He will do that.. so You do not have to speculate what is wrong and how to get the best help to fix it.. Ken

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@ken82

@sisypheanpatient If you are in Austin.. maybe its a good time to get some good water and head back to Mayo MN… I had a failed Nissen (done in Central Iowa) and Dr. Halland at Mayo MN diagnosed it and gave me a way to cope.. He is an esophagus specialist…You need to check though there may be Minnesota GI Doctor visiting in Mayo Scottsdale AZ this March… I had a telephonic consultation with Dr. Halland in MN just a few months ago.. He will do that.. so You do not have to speculate what is wrong and how to get the best help to fix it.. Ken

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Small world. My original Nissen was done by a doctor in Des Moines. I can't recall his name.

I have an appointment with another local doctor who works with my previous surgeon after getting back in touch with my gastroenterologist. I'm trying to suss out my options here before scheduling too many appointments or traveling; my insurance is absolute garbage after my company got bought out, so my finances are in as much pain as my chest these days.

What was the result of your consultation? Did you also have a hiatal hernia present itself again after your previous Nissen?

Given that my barium swallow didn't show abnormal reflux, but my EDG showed a 3cm hernia, I wonder if the Nissen migrated. I would imagine that if it slipped or came undone it would show more reflux. The pain I'm experiencing is more of a pressure in my chest and a constant discomfort than my previous reflux issues where there was more of a relationship to food and drink.

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Hello! I feel your pain. I had the Nissen in 2013. It broke down by 2015. I had the Toupet Fundoplication done to fix it… but that didnt work either. I continue to lose weight. Am struggling to maintain 100 lbs. Get sick after every meal no matter how small. I have gastroparesis now. And positional pains. Latest surgeon told me he WON'T go in there where so many other surgeons have been. He believes they took too much fundus. I am filled with adhesions. When I cough, something bulges out where my diaphragm is… a burning, intense pain which causes me to lay flat while pushing my guts back in. Its horrible. 2 doctors says it's a hernia, the surgeon says it's not. I have no health insurance now. (I have had my gall bladder removed, a 5 lb. Mesenteri abdonminal cyst removed, Marlex mesh implanted… the Toupet was my 6th abdonimal surgery. The only option now is to go to Mayo, but I don't believe they will be able to help either, other than nutrition. Covid and no insurance leave me to survive on my own. Eat tiny meals often, chew overly well, swallow small amounts. Make sure your surgeon is a gastric specialist… not an egotistical general surgeon who is unskilled in this failure of a fix. I read 1 in every 5 Nissens fail. That is pretty bad odds. I regret ever having it done. Good luck!!

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@sickvick Sorry that you have been through so much.. I had my Nissen in Central Iowa.. after struggling with that..9 days in the hospital and 2 months of them trying to figure out what they did wrong.. Mayo Minnesota figured out that the Nissen is what gave me gastroparesis by damaging the nerves that empty the stomach.. Mayo gave me 3 tests in that day and then gave me a way to cope.. with nutritionist and the doctor.. he said 1 in 6 Nissens fail.. I had lost 50 pounds before going to Mayo.. now 6 years ago… I have gained back 40 of that.. two desserts a day and protein.. vitamin pills.. … Not knowing where you live ..try, one of the Mayo locations… MN, Phx AZ, or Jax FL..

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Hi sorry to hear your struggles. One question what about the mesh. Has anyone addressed maybe issues with the mesh. I had my 4 Nissan fundoplication enforced with mesh never worked. I am trying to find surgeon to remove it. Mine caused terrible left pain and shortness of breath. I wish the gi dr and surgeons would have better attitude this procedure is a total failure. Do your research before and ask them exact questions for aftercare. My surgeon left me holding the bag. Wish you speedy recovery and lots of prayers. Ps if you live in Salt Lake City see if you can choose another state. Keep us posted.

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@thielman100

Hi sorry to hear your struggles. One question what about the mesh. Has anyone addressed maybe issues with the mesh. I had my 4 Nissan fundoplication enforced with mesh never worked. I am trying to find surgeon to remove it. Mine caused terrible left pain and shortness of breath. I wish the gi dr and surgeons would have better attitude this procedure is a total failure. Do your research before and ask them exact questions for aftercare. My surgeon left me holding the bag. Wish you speedy recovery and lots of prayers. Ps if you live in Salt Lake City see if you can choose another state. Keep us posted.

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I am going in for my second Nissan procedure. Has anyone in their 80"s had this done? My first was 7 years ago.

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As I read these posts I have to express how sorry I am for all that everyone is going through. But, I really appreciate your candor and sharing your experiences; good and bad.

I have a second surgical consult coming up (first surgeon thinks Linx might be right for me so have manometry and pH study scheduled). As I read your posts, I’m trying to come up with a list of questions to be ready with. Any input is greatly appreciated! Examples:
How many Nissen’s have you done?
How many have failed and had to be redone? (How many were in the last year?)
Do you use mesh as a solution and if so when/why?
Linx- how many, under what circumstances do you do that vs Nissan.
Can you put me in touch with patients who have had both types and one who had a failed Nissen?

I have to do research still on hernias as I do have one.

Thank you in advance for any guidance.

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@marie793

I am going in for my second Nissan procedure. Has anyone in their 80"s had this done? My first was 7 years ago.

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@penny406 @marie793 My one and only failed Nissen was now 6 years ago.. I was 78 when I had that life changing event.. When I had the surgery in Central Iowa.. the surgeon said it could be reversed, but Mayo, after they figured out what had been done, cautioned me NOT to try to reverse or change what had been done for it would or could be worse.. Every meal is a challenge.. but I am glad that I am still in pretty good shape… as I turn 84 in a couple weeks.. I have a Mayo MN GI consult in April.. but no great new or unusual symptoms to report… I just have to be so careful not to eat too much at a time.. no matter how much I loved eating or how much I love that dessert ..

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@penny406

As I read these posts I have to express how sorry I am for all that everyone is going through. But, I really appreciate your candor and sharing your experiences; good and bad.

I have a second surgical consult coming up (first surgeon thinks Linx might be right for me so have manometry and pH study scheduled). As I read your posts, I’m trying to come up with a list of questions to be ready with. Any input is greatly appreciated! Examples:
How many Nissen’s have you done?
How many have failed and had to be redone? (How many were in the last year?)
Do you use mesh as a solution and if so when/why?
Linx- how many, under what circumstances do you do that vs Nissan.
Can you put me in touch with patients who have had both types and one who had a failed Nissen?

I have to do research still on hernias as I do have one.

Thank you in advance for any guidance.

Jump to this post

@penny406 When at Mayo about my Post Operative Gastroparesis the GI Doctor in Minnesota told me that 1 in 6 Nissens Fail..

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I had my one and only Nissen Fundoplication and (Heller Myectomy or something Heller). It has come apart. I had it 21 years ago. It was very tight at first and it was hard to vomit if I was ill. I can't lie down for four hours after eating or drinking even water–everything comes up in my esophagus and it burns. I have Barretts Esophagus. I have had it for several years. I thought I had a hernia. I just learned I don't have a hernia–I have an enlarged duodenum. I don't know the cause–I am going to have an endoscopy next month. I have had this swelling for several years–it is embarrassing because it looks like I have three breasts. I certainly wish they would have found it the last time or the times before when I had it done. In fact, I had to tell my GP doctor what it is after having a barium swallow and scan done. I guess my doctor doesn't read the results of the tests she orders! I hate to change doctors–I have had her for several years and I like having a female doctor. I have had my gall bladder and appendix removed. I don't have any idea about an extended duodenum–does anyone? Please tell me if you do. Thank you.

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@penny406

As I read these posts I have to express how sorry I am for all that everyone is going through. But, I really appreciate your candor and sharing your experiences; good and bad.

I have a second surgical consult coming up (first surgeon thinks Linx might be right for me so have manometry and pH study scheduled). As I read your posts, I’m trying to come up with a list of questions to be ready with. Any input is greatly appreciated! Examples:
How many Nissen’s have you done?
How many have failed and had to be redone? (How many were in the last year?)
Do you use mesh as a solution and if so when/why?
Linx- how many, under what circumstances do you do that vs Nissan.
Can you put me in touch with patients who have had both types and one who had a failed Nissen?

I have to do research still on hernias as I do have one.

Thank you in advance for any guidance.

Jump to this post

My sister passed away last summer. She had so many surgeries and mesh in her stomach–it hurt her constantly. She rubbed her stomach all the time–also, it was quite enlarged and she wasn't large at all–just her stomach–huge. My daughter had three surgeries of having mesh in her stomach to fix hernias. It felt like it got very hard. She passed of other complications at age 49. I would never recommend mesh.

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@sickvick

Hello! I feel your pain. I had the Nissen in 2013. It broke down by 2015. I had the Toupet Fundoplication done to fix it… but that didnt work either. I continue to lose weight. Am struggling to maintain 100 lbs. Get sick after every meal no matter how small. I have gastroparesis now. And positional pains. Latest surgeon told me he WON'T go in there where so many other surgeons have been. He believes they took too much fundus. I am filled with adhesions. When I cough, something bulges out where my diaphragm is… a burning, intense pain which causes me to lay flat while pushing my guts back in. Its horrible. 2 doctors says it's a hernia, the surgeon says it's not. I have no health insurance now. (I have had my gall bladder removed, a 5 lb. Mesenteri abdonminal cyst removed, Marlex mesh implanted… the Toupet was my 6th abdonimal surgery. The only option now is to go to Mayo, but I don't believe they will be able to help either, other than nutrition. Covid and no insurance leave me to survive on my own. Eat tiny meals often, chew overly well, swallow small amounts. Make sure your surgeon is a gastric specialist… not an egotistical general surgeon who is unskilled in this failure of a fix. I read 1 in every 5 Nissens fail. That is pretty bad odds. I regret ever having it done. Good luck!!

Jump to this post

I was told I have a hernia by several doctors–they saw the bulge and felt it (it hurts) and said it's a hernia! Well, I have had this bulge for several years. It's getting larger so I told my GP, I am ready to get my hernia fixed–it hurts! So, she sent me to a surgeon in Columbus and he had me have a test. I swallowed barium and they did a scan. I got the results stating three times–I do not have a hernia–I have an extended duodenum. I have no further appointments with him??? So, I look it up and tell my doctor I may have H PLyori . So we did a stool test–it came back negative. Next I am going to have an endoscopy. She will do a biopsy. I already have Barretts Esophagus. Have a failed Nissen Fundoplication.

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