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!

@dianecostella

I had Toupet’s Fundoplacation surgery in the end of June. I have not been right since. A week post surgery I was admitted for uncontrollable vomiting. I vomited 12 hours straight. They found nothing wrong but an inflamed esophagus. I was given IV steroids for 24 hours and was sent home with steroids. I continued to vomit DURING each meal until about two weeks ago now it’s occasionally. It doesn’t have to be food, liquids are vomited as well. I still have terrible heartburn. On occasion it comes up to my mid thorax. I had a tele-health with the surgeon on Thursday and I got the impression he didn’t believe me. I am so mad. He wants me to go for a Bravo test to see what it could be if it’s not a failed surgery then it’s something else. Like what? Is he kidding. He emailed my GI doctor to have someone from her office schedule the test. She can’t perform the procedure until December 1st. What a nightmare this entire experience has been. I went to one of the best hospitals in NYC to have this surgery. I am truly at a loss.

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@dianecostella

I can see understand why your esophagus was inflamed.. the vomiting probably did that.

Try just liquids for several days. To help in the healing of your esophagus try sipping on High Protein shakes. You need about 60g of protein in a day. You do not want to become dehydrated.. so add broth, jello, and juices.. not citrus juices like orange. Then progress to soft, easily digestible foods. You can search online for what is more easily digestible to figure out what to try. Any signs like vomiting or food regurgitating go back to liquid. If you cannot swallow food nor water .. have a feeling something is stuck in your esophagus you need to go to the ER.

Test. There are a few version of the regular barium swallow test… some with just the barium and some with barium and food and some with just various foods. If they haven't done a CT scan he could order that to see if their is a kink or swelling in the surgery site. There are probably more, but cannot think of it.

ZeeGee

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@evanssandy34

I had a NF done 5 years ago and it has been the worst decision that I have ever made in my life. I'm so bloated that I look like I'm very pregnant. I can't burp, I'm not hungry ever and can only eat very little at a time. I'm malnourished and I'm not absorbing vitamin supplement that I have been given. I have been tested for any other reason for my bloating and tried ever medication to relieve the presser of sever bloating and nothing works. My doctor told me that he was out of tools in his tool box and sent me to a special GI doctor. He just looked and me and asked me what I was doing there. Named off every test that I have had and every medication that I have tried and said that he could not help me. I have to either live with this or have it undone and get my acid reflux back. I have never been treated like this by any doctor and made up my mind before I walk out the door to have it undone. I'm 49 years old now and refuse to live the rest of my life this way. The catch is that I called my sister and told her what happened and she said that both her and my niece have acid reflux too but it is because of LOW ACID. WHAT???? I HAVE NEVER HEARD OF THIS BEFORE! So you are telling me that every time that a doctor prescribed me antacids or every time that I took over the counter antacids, I could have always been making acid reflux worse. YEP, IT'S A GOOD POSSIBILATIY. WOW!! I came home and looked it up and she is right. Every last symptom of GERD! I'm so mad right now that I was never told this and NO Dr. even look into this and just sent me for the NF. I could not post a link for the symptoms and the at home test, for those of you that can burp. There just maybe hope for you after all. Google symptoms of low stomach acid and be shocked.

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@evanssandy34 … Welcome to the Club of Failed Nissens… I am 84 now.. had the Nissen 6 yrs ago for GERD.. at my local central Iowa Hosp./surgeon.. Again worse decision I ever made.. They damaged enough of that hairnet like nerve system that makes the stomach work.. that My Mayo GI Doctor called it Post operative gastroparesis.. Every meal is a challenge.. the best you feel each day is in the morning when stomach is empty… I had lost 50# before going up to Mayo.. to have them give me a way to cope.. I have gained back 40#.. but it is a battle every day .. Mayo prescribed a Mirtazapine to make me want to eat… and I know I have to eat.. everytime I go through the kitchen.. put something in your mouth.. pack a snack bag to go to work.. eating out gives you twice the food you can eat.. and not be bloated.. but You know and I know eating is not optional.. it is a requirement.. When I have guests, not often… they are amazed I don't weigh a ton.. but Vitamin Pills, generic Nexium, probiotics, gas-x..keep me going with some stability… Good Luck.. Mayo told me the Nissen could NOT be taken down.. We are stuck with it.. Ken

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@ken82

@evanssandy34 … Welcome to the Club of Failed Nissens… I am 84 now.. had the Nissen 6 yrs ago for GERD.. at my local central Iowa Hosp./surgeon.. Again worse decision I ever made.. They damaged enough of that hairnet like nerve system that makes the stomach work.. that My Mayo GI Doctor called it Post operative gastroparesis.. Every meal is a challenge.. the best you feel each day is in the morning when stomach is empty… I had lost 50# before going up to Mayo.. to have them give me a way to cope.. I have gained back 40#.. but it is a battle every day .. Mayo prescribed a Mirtazapine to make me want to eat… and I know I have to eat.. everytime I go through the kitchen.. put something in your mouth.. pack a snack bag to go to work.. eating out gives you twice the food you can eat.. and not be bloated.. but You know and I know eating is not optional.. it is a requirement.. When I have guests, not often… they are amazed I don't weigh a ton.. but Vitamin Pills, generic Nexium, probiotics, gas-x..keep me going with some stability… Good Luck.. Mayo told me the Nissen could NOT be taken down.. We are stuck with it.. Ken

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Yes, it can be taken down. I'm looking into a Dr. Smith in Atlanta and I have an appointment with a Dr. Hoppo in PA to do take down. If you are on facebook, join the Nissen Funduplication Take Down group. This is where I found some recommended Dr.'s that do take downs and stories of others like us, to include some of the take down stories. This give me some hope and I'm searching hard for an answer to this mess.

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@evanssandy34 the problem with the take down of the Nissen is that those severed and injured nerves that caused the slow stomach emptying process will not regenerate and function like before.. I will check back with Mayo MN to see what they think now..

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@ken82

@evanssandy34 the problem with the take down of the Nissen is that those severed and injured nerves that caused the slow stomach emptying process will not regenerate and function like before.. I will check back with Mayo MN to see what they think now..

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My surgeon did not injure my nerves or cut my vegas nerve. I'm just so bloated that there is no room for food and I can't get enough nourishment. That is a huge risk for me in having the take down. That is why I have been researching every Dr. that has been recommended with a fine tooth comb, but it is still a possibility that this could happen and I don't want to be any Dr.'s first time. Good luck to you!

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