Anyone else had a Nissen slip? (it's been 7 years)

Posted by btowngal @btowngal, Oct 29, 2018

Hello Everyone,

I had a Nissen fundoplication done 7 years ago. It worked really well. If anything, I had to be sure to take smaller bites and drink liquids with every meal to make sure everything made it down to my stomach, so nothing was coming back up! In the last 6 months I started having pain behind my left ribcage and two instances of horrific waves of pain below my sternum that would go all the way around my back. An endoscopy shows slight inflammation of the stomach lining, but biopsy showed no infection. They did an abdominal CT with oral and IV contrast last Wednesday. I was able to read the radiology report on Friday.

"New small 4.2 cm hiatal hernia since previous upper GI on 11/10/2016. The appearance is compatible with herniation of the area of fundoplication."
"Impression: New small hiatal hernia since 11/10/2016 . The herniated portion of the stomach appears to represent the area of fundoplication (slipped Nissen)."

I am still waiting to hear from my gastroenterologist, but I am worried that I will have no choice but a revision surgery because I have read it can be dangerous to leave it. Has anyone else had any experience with a slipped Nissen?

Thanks!

Liked by pdilly

Hi @leannesalinas,

You may notice that I moved your discussion and combined it with this discussion on Nissen Fundoplication started by @btowngal. I noticed that @btowngal shared her insights with you (thank you!), and I thought it would be beneficial for you to be introduced to some other members as well.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I encourage you to view these other conversations on Connect, where many others – @robatk17 @miserablenissen @ed_85 @kozlo52 @nirolk @link1030
have also shared their frustrations with this procedure:
– Reversal of a fundoplication https://connect.mayoclinic.org/discussion/reversal-of-a-fundoplication/
– Failed Nissen w/gastroparesis & possible MALs https://connect.mayoclinic.org/discussion/failed-nissen-wgastroparesis-possible-mals/

@leannesalinas, have you been able to resolve some of your symptoms?

Liked by pdilly

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@marychapman @sickvick @fourof5zs @leannesalinas @pdilly

Hello All,

I wanted to post an update since I saw the surgeon a couple weeks ago. He said that after reviewing the CT scan, the Nissen wrap itself hasn't moved, but a small portion of the stomach has been pulled up through it. While the only way to fix this is through a second surgery, he told me that currently there is no danger to leaving everything as is. The risk of complications goes up from 1-3% with my first surgery to 5-10% with a second. Since they would not know why the stomach was pulled up (shortened esophagus from scarring or just a result of the small hernia), the surgery could end up even more complicated if he would have to remove part of the stomach to lengthen the esophagus. There is a greater chance of bleeding with the liver or spleen. He said that while liver bleeding is very easy to stop, the spleen is a very tender organ and it can be more difficult to stop bleeding, which can potentially lead to it needing to be removed. He also said that the chance of long-term side effects such as difficulty swallowing, inability to burp, and more limited diet could result. Finally, the recovery would be longer than the first surgery. He told me that I would have to weigh the amount of discomfort I am in right now with the potential risks.

I have opted to not have another surgery at this time. While I still have some spasms and heartburn, I consider my current symptoms very manageable. Should the hernia get bigger causing more of the stomach to move up or the symptoms become significantly worse, my surgeon said that he will always be there and we can schedule surgery whenever I want to.

I hope that this helps some of you.

Best,
Sharlene

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@btowngal

@marychapman @sickvick @fourof5zs @leannesalinas @pdilly

Hello All,

I wanted to post an update since I saw the surgeon a couple weeks ago. He said that after reviewing the CT scan, the Nissen wrap itself hasn't moved, but a small portion of the stomach has been pulled up through it. While the only way to fix this is through a second surgery, he told me that currently there is no danger to leaving everything as is. The risk of complications goes up from 1-3% with my first surgery to 5-10% with a second. Since they would not know why the stomach was pulled up (shortened esophagus from scarring or just a result of the small hernia), the surgery could end up even more complicated if he would have to remove part of the stomach to lengthen the esophagus. There is a greater chance of bleeding with the liver or spleen. He said that while liver bleeding is very easy to stop, the spleen is a very tender organ and it can be more difficult to stop bleeding, which can potentially lead to it needing to be removed. He also said that the chance of long-term side effects such as difficulty swallowing, inability to burp, and more limited diet could result. Finally, the recovery would be longer than the first surgery. He told me that I would have to weigh the amount of discomfort I am in right now with the potential risks.

I have opted to not have another surgery at this time. While I still have some spasms and heartburn, I consider my current symptoms very manageable. Should the hernia get bigger causing more of the stomach to move up or the symptoms become significantly worse, my surgeon said that he will always be there and we can schedule surgery whenever I want to.

I hope that this helps some of you.

Best,
Sharlene

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@btowngal A recap for those who do not know my story. My paraesophageal hiatal hernia was a booger. Kept pulling my stomach into my chest. It made it a bit uncomfortable to breathe at times. I had the Nissen wrap in 2001 and it immediately started to undo, but I lasted with it until 2007 when I chose the wrong surgeon for repair and he used mesh in a place he should not have. Then because of mesh I went to Mayo in Jacksonville in Oct 2013 and had an undo of the wrap and lost the upper part of fundus, so another wrap was out of the question. The surgeon repaired the hernia best he could, but it started to slip and within a few months my stomach was again pulled into my chest. Next surgery at Mayo was with Dr Bowers in Sept 2014. He did a gastric bypass with a twist.. not sure what the twist was. All went well except my esophagus shortened, pulled my stomach and one loop of intestines into my chest and caused a leak.. like a 1% chance of that happening. 3 weeks in the hospital with a week I remember very little. I left with a feeding tube. Surgery in the future was known when I left the hospital. I was too weak for more surgery right then. Six months later I was in out local ER. Two more loops of intestines came into my chest pushing my left lung against my rib cage. They got me stabilized and it was a couple of weeks before i could see Dr Bowers.. He was out of country. If I need to I could go to the Mayo and see another doctor.. my local hospital would even airlift me in another emergency. I stayed stable and about 6 weeks after my ER visit I had srugery in May 2015. Dr Bowers had to coordinate the surgery with Dr Thomas, a thoracic surgeon. The surgery had to be done open, because of the intestines pushing my lung against my ribs.. So it was very painful because they cut from sternum around under the arm to back of shoulder… cracking one rib and cuttting another and cutting muscle. It is a very difficult surgery to go through and to recover from. If I wanted a chance at living I had no choice but to have it. I still hurt . I had already had problems swallowing before the surgery. The pain is mostly from my shoulder, arm and rib.. still some stomach pain too. I have a smal tear of the labrum in my shoulder. I have worked with a pain specialist and done physical therapy.. which have helped, but there is stil a lot of pain. After the surgery I did spend a week in the hospital, but then had to go back in because I was dry heaving. I was still on feeding tube. I had swelling and they tried IV steroid, but the swelling did not go enough down, so had two dilations while in hospital. I think that trip was a week. I think I had two more dialation after getting out of hospital. I had another dilation August of last year and will need to go again soon. The swallowing is getting difficult again. More burping, more stomach pain and am having trouble maintaining weight. I fill up very fast. Often my food just backs up into my esophagus because of spasms right above my stomach.. the sphinter closes when this happens.

I agree with you, Sharoene. I would wait as long as I could before having more surgery and I pray all goes well for you. No problems I had were of the fault of the surgeons at the Mayo… it was my body causing the problems. Dr Bowers is a fine planner and surgeon, and has a good team. One team member had left his team by my third surgery there and he asked to be in on my care and Dr Bowers agreed to it. My case seemed to be one for the record book. I now see Dr Francis (GI dr) and her NP at the Mayo. My local GI doctor said he just did not feel comfortable treating my esphagus after all the issues and surgical changes I had. Dr Francis was already very familiar with my case history.. she said I was the talk of the hosptial for a while. Wow! I must have been one of their stranger cases.

If anyone needs to talk I'm here 😀
Zaroga (aka ZeeGee)

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@longnguyen993

After reading all the responses… now I know I am not alone. My mesh and fundoplication issues are real. I believe it has given me an eating disorder… the fear of food. I dread meal time… yet think of food constantly If I happen to overeat by just one spoonful… the bloat, the extreme abdonimnal pain, salivation, sweats, wretching… since I can never throw up again… until it violently shoots out of me from below. And if I don't eat… pains like a heart attack and passing out.

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OMG… I read your response to btowngal… and seriously I thought I had written it. Your words are my words, too. Marlex mesh implanted in 2000… since then my gut has been compromised. Did not make the connection to the mesh. Nissen fundoplication in 2013 by a general surgeon who "snugged it up real tight"… discovered I was packed with adhesions, causing my stomach to be pulled into my chest… 2 extra hours each surgery cutting them away to get to my stomach and esophagus. Constant pain, esophageal dysphagia, 5 thyroid nodules, losing weight like mad. 2013 food issues, unintentional weight loss… malaise & fatigue… used to weight 190 to 210… down to 150. Then in 2015 slipped Nissen… another surgery to do a Toupet Fundoplication… more adhesions pulling, tugging… attached to bottom of my heart and back of ribcage. Followed by yet another mesh implant a month later, due to an umbilical stitch that broke down. 127 lbs at start of that treatment. This surgery was promised to fix it all and i would feel good again. WRONG!! Everything was so much worse after that… can't eat, can't function… quit my job of 36 years to recover, lost my health insurance, surgeon left town in middle of night… Been on my own since and everything has gotten worse. I now weigh 105 and that's where your words are mine. FEAR OF FOOD EVERY.SINGLE.DAY. even the smallest meals make me sick. I am wasting away. No muscle mass, no fat reserves, no doctors. I have inner pain and positional pains… cant have any pressure there, lay on right side, bend over, etc without extreme pain… not to mention eating issues. I miss eating and enjoying a meal instead of being afraid. And yes… if I dont eat… that heart attack/passing out feeling. Had passed out 2 times, hit my face on the floor, head trauma.
Hospital turned me down for financial aid. Now trying to get disability or Medicaid… SOMETHING! Trying to be part of the mesh lawsuit, but hospital has destroyed some important records.
Now I have emphysema, too.
I trust NO ONE in the medical field now. Am scared if I go to Mayo that it will get even worse. Just lost in this illness and cant find a way out.

Liked by pdilly

REPLY

I'm sorry for what you are going through, I had a Nissen a couple months over 4 years ago in Iowa.. It went very wrong in that some nerves that help the stomach pulse to get the food flowing were injured…. Mayo Rochester diagnosed that I had post operative gastropaneisis…as really slow stomach.. I had lost 50 pounds from the not being able to eat much and keep it down.. Only when I went to Mayo did they figure out what had happened.. the can not fix it but they gave me a way to cope.. I have been to Mayo for several different problems… Trust their GI Dept. It's different than any other clinic I have ever been to.

Liked by pdilly

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@ken82

I'm sorry for what you are going through, I had a Nissen a couple months over 4 years ago in Iowa.. It went very wrong in that some nerves that help the stomach pulse to get the food flowing were injured…. Mayo Rochester diagnosed that I had post operative gastropaneisis…as really slow stomach.. I had lost 50 pounds from the not being able to eat much and keep it down.. Only when I went to Mayo did they figure out what had happened.. the can not fix it but they gave me a way to cope.. I have been to Mayo for several different problems… Trust their GI Dept. It's different than any other clinic I have ever been to.

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Now I weigh 176.. up some 25 pounds since going to Mayo Rochester, MN… I too miss the enjoyment of a good meal.. and a cocktail or some sort… but Carbonation is a real problem…bloating can happen…. and I have to carry something to fight that whenever I go out to eat… I take Mirazapine…a drug that helps me want to eat… do the process as that is the only way to keep going…

Liked by pdilly

REPLY

First I want to say that when I like your post what I mean is that I like that you posted it. I certainly don’t like what’s going on to all of you people with such pain. I’m so sorry for each and every one of you.
My Nissen fundiplication has come completely undone according to the surgeon who did the ablation on my Barrett’s esophagus on July 31, 2019. He was not able to complete my fourth ablation because of food gushing up he said from my stomach into my esophagus. (I’ve had lots of reflux in the last several months so I wasn’t surprised. No heartburn pain though. I take 60mg of prevacid twice a day so it apparently completely gets rid of any acid production in my stomach!)

He wants me to have another Nissen before my next ablation. The giant hernia in my esophagus is what led to my first Nissen in 2016 — or 2015? The giant hernia is now back — a whole lot of my stomach is in my esophagus. We think it came undone because of the severe wretching and vomiting I have whenever I get stomach cramps. I get them once or twice a month — I’m assuming because I have Gastroparesis.

So my choice is to get another Nissen so they can complete ablations on the Barrett’s low grade dysplasia — or not. I’m pretty sure I’ll go ahead and have another Nissen because my concern of developing esophageal cancer outweighs my concern of a 2nd Nissen fundiplication developing complications

I just feel like I have to get all the information I can about my medical issues, find doctors I trust and have faith in, then prayerfully make my own decision as to the best path to take.

Easy for me to say since the severity of my condition is so much less than the conditions y’all have described. I wish the best for you!

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