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!

@woogie Have you given the Cleveland Clinic a chance to diagnose the Problem..? They have a highly rated GI Dept.

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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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Will be 80 in Feb. my very large hiatal hernia was managed medically but I kept being anemic, and nearly died from internal bleeding…and the cause was Cameron ulcers ( friction ulcers caused from the sliding up and down of the hiatal hernia. ). I was convinced of the need to do Nissen to end the Cameron ulcers. I have been miserable since the surgery twelve weeks ago. …constant diarrhea and wretching but eventually could vomit again,,, bloating…. The endoscopy showed the hernia already returned. I can not imagine anyone electing to have this surgery.

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My recent Nissen surgery to stop Cameron ulcers has failed. Endoscopy shows the hiatal hernia has returned. Surgery was 12 weeks ago. Surgeon said just ‘eat what your body will tolerate’.

What are my options? Live miserably..unable to eat or digest food normally? Have another surgery? Who could I trust to consult with?
At nearly 80 I don’t know why I was stupid enough to have the surgery..

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@sandysrobb

My recent Nissen surgery to stop Cameron ulcers has failed. Endoscopy shows the hiatal hernia has returned. Surgery was 12 weeks ago. Surgeon said just ‘eat what your body will tolerate’.

What are my options? Live miserably..unable to eat or digest food normally? Have another surgery? Who could I trust to consult with?
At nearly 80 I don’t know why I was stupid enough to have the surgery..

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I had Nissen fundoplication surgery (hiatal hernia repair) when I was 77. It lasted 2 and a half years. I am now 81 and have no desire to go through that again. I share your pain and disappointment. I am taking Pantoprazol (Protonix) and it is NOT keeping me from having reflux. My symptoms seem to be worse than they were before the operation, which was an emergency as my hiatal hernia had twisted. At present I am getting up and taking Mylanta when the burning starts, usually 2 to 3 hours after I go to bed. Anyone have any thoughts that might help?

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@joyceinil

I had Nissen fundoplication surgery (hiatal hernia repair) when I was 77. It lasted 2 and a half years. I am now 81 and have no desire to go through that again. I share your pain and disappointment. I am taking Pantoprazol (Protonix) and it is NOT keeping me from having reflux. My symptoms seem to be worse than they were before the operation, which was an emergency as my hiatal hernia had twisted. At present I am getting up and taking Mylanta when the burning starts, usually 2 to 3 hours after I go to bed. Anyone have any thoughts that might help?

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After another day and night of acid squirting up in my esophagus and throat..and of a hard bloated stomach,..of trying to eat baby amounts of food hoping they will be tolerated..of fibers and meds to stop reflux and diarrhea and vomiting..of being too exhausted to do much at all…. I don’t want to live like this. Is there a specialist anyone knows of for a second opinion, do I leave the failed Nissen alone..or what?

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@joyceinil

I had Nissen fundoplication surgery (hiatal hernia repair) when I was 77. It lasted 2 and a half years. I am now 81 and have no desire to go through that again. I share your pain and disappointment. I am taking Pantoprazol (Protonix) and it is NOT keeping me from having reflux. My symptoms seem to be worse than they were before the operation, which was an emergency as my hiatal hernia had twisted. At present I am getting up and taking Mylanta when the burning starts, usually 2 to 3 hours after I go to bed. Anyone have any thoughts that might help?

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Sorry for us both. We were both caught up in emergency situations. I can not imagine anyone thoughtfully electing to do this surgery

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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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I understand your frustration with seeking help.

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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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// I have never been treated like this by any doctor //

Welcome to modern medicine, where physicians are only medical mechanics. Generalists can be consulted on technical questions and specialists will prescribe and operate. Period. We're on our own.

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@dvdcsmth

// I have never been treated like this by any doctor //

Welcome to modern medicine, where physicians are only medical mechanics. Generalists can be consulted on technical questions and specialists will prescribe and operate. Period. We're on our own.

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I understand Physicians and we all seek and need medical assistance in our lives. But why the NF instead of checking and informing to the fullest of the complications that you would be recommending and checking for low acid as a possibility before such a barbaric life changing extreme procedure? Or are you all just following a book and not thinking out side the box. I feel like a bloated cow left on the side of the road ready to explode at any moment of my life. Only I'm still breathing. PERIOD!

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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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I was diagnosed as having achalasia type 111 and am trying to get a surgeon who specializes in that procedure. My only option to date is having to travel 2 hours round trip to the Swedish hospital in Seattle. Still waiting on my primary doctor to get the referral into Swedish hospital. I'll be on the phone trying to get this accomplished today. Frustrating!

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