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btowngal
@btowngal

Posts: 6
Joined: Oct 29, 2018

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

Posted by @btowngal, Mon, Oct 29 9:58am

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

REPLY

Hi! I too had a slipped Nissen… within two years. I then had a Toupet Fundoplication… it, too, is breaking down… 3 years later. I cannot eat more than a mouse, have dumping syndrome and dysohagia (swallowing troubles), plus a bad abdominal mesh from 2000 (still in me). I am also filled with adhesions. I have regretted both surgeries, but no other option. Weighed 210 in 2013… now down to 115. Every meal is a struggle. I wish you much luck and success. I will be watching this to see what advice you get. I never got much response from mine. Starving to find out!!

Liked by pdilly

@sickvick I am so sorry to hear of all of the trouble you have had! I had relative success for the 7 years the wrap was in place. I do have trouble with spasms which can be very painful. I am just anxious to find out whether surgery is something I am going to HAVE to do. I will definitely post an update when I hear.

Liked by pdilly

My story os long. Part of it is at my blog. .. which I intended to get back to, but now my husband and I are caretakers of my 90 year old mom. Life is so unpredictable .

Here is link to my blog post and no ads that I am aware of: https://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html

Basically two wrap failures… in the second one the surgeon put wrap on fundus and when I had an undo of wrap I lost a good chunk of the fundus with the mesh removal and no way to have another wrap. I had a very stubborn paraesophageal hernia. I eventually had a gastric by pass to fix it… the surgery originally was used to fix these types of hernias and a side effect is weight loss. I have trouble maintaining weight.

I sometimes go down to 120 lbs. Have to eat cookies to get enough calories to keep around 125 lbs. Doctors always want me to drink protein shakes, but they make me nauseous and I tend to vomit them up. While I was on feeding tube I could drink Carnation Breakfast drinks, but then I could not keep them down after feeding tube removed. I do not know why it changed. I have always had a problem with cow, soy and rice milks. I am not lactose intolerant. I can eat cheese, yogurt and cottage cheese just fine. I am fine when milk is used in cooking, just cannot drink it as it comes. Eating is a big struggle. I fill up quickly… can only eat a cup or so of food at a time… I eat a little something every two to three hours during the day.

I have acid now in the form of thick mucus. I have Barrett's esophagus, achalasia and gastroparesis. I have a horrible time swallowing some foods and some pills. My stomach at time slows to a crawl at emptying and that causes my weight to go down. I eat mostly soft cooked food, but crisp things like sugar cookies or pecan sandies and Ritz crackers I can get down. I also make granola bars with toasted quick oats, finely chopped roasted almonds, pecans, raisins, and craisens ir ither dried fruit.. brown sugar, and local honey. Good protein and high calorie breakfast. Too much sweets and the mucus increases… too spicy the same. The mucus does not burn like the bile acid, but still not pleasant.

Liked by pdilly

Wow. I’m so glad I saw y’all’s posts. I’ll keep watching. I hope someone out there has good results to report after a second Nissen.

I was told after my second RFA (radio frequency ablation) on my Barrett’s that my Nissen has apparently slipped and I now have a small hernia. We’re not going to consider surgery for that though until all of the RFAs on the Barrett’s are complete. (Third is scheduled for later this year and I will have at least 4 more after that. )

@btowngal I too wonder if I will HAVE to have another Nissen fundiplication.
@fourof5zs How on earth are you allowed to eat all of that fiber with your Gastroparesis? I have that too and fiber is positively forbidden on my eating pl

I am so fortunate that my Nissen slip doesn’t seem to cause me any problems. I am so sorry for the pain and difficulties y’all are experiencing.

@pdilly

Wow. I’m so glad I saw y’all’s posts. I’ll keep watching. I hope someone out there has good results to report after a second Nissen.

I was told after my second RFA (radio frequency ablation) on my Barrett’s that my Nissen has apparently slipped and I now have a small hernia. We’re not going to consider surgery for that though until all of the RFAs on the Barrett’s are complete. (Third is scheduled for later this year and I will have at least 4 more after that. )

@btowngal I too wonder if I will HAVE to have another Nissen fundiplication.
@fourof5zs How on earth are you allowed to eat all of that fiber with your Gastroparesis? I have that too and fiber is positively forbidden on my eating pl

I am so fortunate that my Nissen slip doesn’t seem to cause me any problems. I am so sorry for the pain and difficulties y’all are experiencing.

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@pdilly I forgot to mention I also have diverticulosis . Last year I had a very bad attack of diverticulitis. I have gone from having a few pockets to many throughout my colon… so more chance of getting diverticulitis. The attack last year was no fun!.. the worst I have ever had! It is difficult reaching a balance of fiber when you have one condition requiring a high fiber diet, and another that requires a low-fiber diet, and another condition requiring easy to swallow foods. The granola bars are my main source of fiber with the nuts and dried fruit. It amazes me how well it does digest and not just sit in my stomach like most fiber does. Cooking Quick Oatmeal the regular way it just sits in my stomach, but toasting it changes something. The nuts and dried fruits are chopped small and the bars are soft with the honey and brown sugar. Small bites and slow eating is a must! I really do not know which is the worst to deal with.. chances of getting diverticulitis or having gastroparesis. Of course there is the small stomach to deal with and it gets tiring eating something every two to three hours trying to get enough healthy calories in.

My last surgery had to be open because the hernia pulled 3 loops of my intestines into my chest and pushed my lung against my ribcage. I still deal with the pain from this surgery… way back in 2015. The pain is less, but still high on the scale. My body just kept make things so complicated.

Please bear in mind that my surgical experience is a rarity. My first two doctors in my hometown were not great or even good, but the ones at the Mayo Clinic in Jacksonville were the best. Do not let it scare you, but be aware that sometimes the body is going to do what it wants to no matter how great the surgeon is and like I said: I had the best at the Mayo Clinic in Jacksonville. I still go there for esophageal checkups. My hometown gastro doctor said that so much was done to me at the Mayo Clinic that he thought it best they continue with my care there.. he still takes care of my lower abdomen and he is a great doctor.

@pdilly @fourof5zs @sickvick Okay, so here is an update. I get so incredibly frustrated with how hard it is to get someone to return a call. After a week of no word from the gastroenterologist about my CT I called. They took a message because they said it was an hour phone wait time to talk to anyone. This was Tuesday. Thursday I sent a message through my health portal explaining that I read the radiology report and I understand what is wrong, but I just wanted answers to three questions:

1. What are the implications of the slipped Nissen?
2. If this something that HAS to be fixed surgically?
3. If it does, what surgeons do they refer to?

Got a voicemail message earlier today from the doctor saying, "This is Dr. [removed]. I just wanted to see if you have any questions about your CT results. We would refer you to Dr. Larry Stevens [he did my first surgery] who I think is still practicing in Indianapolis. If you want us to schedule the appointment, let us know."

So…the long and short of it is that I took it upon myself (I am not waiting for anyone else to do anything I can do myself!) to make an appointment with Dr. Stevens for Friday, November 16th. I will say that I had a wonderful experience with him with my first surgery. At that point he had done almost 1,500 Nissens with a 98% success rate. What is frustrating is that I still don't know if I was referred because I will definitely need surgery — was I referred because they aren't sure if I will need surgery? Now another 2 week waiting game, but at least I will know when I leave his office on the 16th what the path forward will look like. I will continue to update. I know that I appreciate reading others' experiences, so others may benefit from reading mine.

Liked by pdilly

@btowngal You really do have to be proactive in your care and I suggest that you take someone with you to your surgical appointment. Sometimes another person can think of something to ask that you had not thought about. My husband was with me all the way… he was my advocate in those times when I could not be.

Zaroga

Liked by pdilly

@fourof5zs Normally my partner would come with me, but is out of PTO until after the first of the year. I am going to write all our questions down before I go so that I am sure not to forget anything.

@leannesalinas

I have had 2 lap nissens in the last 18 months. I learned last week that it has failed again. I have horrible gas, nausea, dysphagia and some reflux. I am so very discouraged at this point. I have been referred to a surgeon 2.5 hours away from home. He can't see me until December and I'm worried that is too far out. Does anyone have any suggestions for me about what I should expect next? Thank you so very much!!

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@leannesalinas I wish I could offer you the insight that you are looking for. I wanted to reach out to you, at least. I had my Nissen done 7 years ago. Recently a CT scan showed that the Nissen has slipped and I have a 4.2 cm hiatal hernia. I was also referred back to my surgeon from the original surgery. I see him on the 16th. I am anxiously waiting for answers too! If you haven't already, take some time to read through the discussion called Reversal of a fundoplication. While it's not exactly your situation, I found some helpful information reading through peoples' experiences and information. Good luck!

@btowngal – I will start off by saying that I am a Canadian so my experiences may be different than most Americans experience. I had my first open Nissan in 1988 and at that point it was a new surgery and I was advised then that they couldn’t give us any idea of how long the Nissan may last or what the long term side effects could be. It was a terrible experience when it was done and I swore that I would never have a repeat. I had my repeat Nissan 15 years which was about what they had expected. I had that done laparoscopically which was far easier to recover from it was still a poor experience. Both times I needed to have my throat stretched 2-3 months after the surgeries as the wraps were too tight and I couldn’t swallow more than jello. I have had my wrap rechecked several years ago and they say it is still intact but my swallowing is becoming more and more comprised and I can’t get above 105 lbs. I had been so ill with other gastro issues as a result of the Nissan’s that I was down to 90 lbs and my gastro dr wasn’t too concerned. I have severe back pain, sciatica, spinal stenosis, gastropareisis and gas bloat syndrome. About every 6 weeks I experience terrible pain and bloat as a result of the gastro stuff that I have to take enough pain meds to knock myself out for hours as the pain is almost unbearable; as well as severe dry heaving that goes along with it. Since I can’t throw up at all the nausea goes on and so does the dry heaving. About 3-4 days later I eventually pass everything through painful diarrhea. I just had a colonoscopy and won’t get results until early December. My Dr has dragged this testing out over a year and only because he finally saw me and realized how bad I had become. There seems to be several new procedures for acid reflux which seem to be much less invasive than when I had my first surgery. I wish that I had never started down this path. I don’t think that I would ever have another Nissan done as my body couldn’t it. Best of luck to anyone dealing with these issues.

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. I weighed 130 in 2015 before surgery (was always around 180) 3 years later I hover between 106 and 115. I cannot gain weight. Now I also have emphysema and when I cough my guts try to pop out under my ribs in the center. Soooo painful! I push them back in. Seeing a brand new dr tomorrow… wish me luck in my new quest for change. I am scared. I want to LIVE! I want to EAT!

@btowngal

@fourof5zs Normally my partner would come with me, but is out of PTO until after the first of the year. I am going to write all our questions down before I go so that I am sure not to forget anything.

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@btowngal We had a notebook we wrote our questions in… it was nice to go back and refresh our memories on what we discussed. My husband would make notes of what the doctor said. The Mayo is great in that you recieve the doctor's notes of the visit in their app.

Best wishes on your upcoming appointment.
Zaroga

@sickvick

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. I weighed 130 in 2015 before surgery (was always around 180) 3 years later I hover between 106 and 115. I cannot gain weight. Now I also have emphysema and when I cough my guts try to pop out under my ribs in the center. Soooo painful! I push them back in. Seeing a brand new dr tomorrow… wish me luck in my new quest for change. I am scared. I want to LIVE! I want to EAT!

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@sickvick The surgeon had put the mesh at the fundus on my Nissen repair. I kept telling him I was in pain. At the Mayo Clinic they were not sure if it was the cause of my pain or not. The hernia had pulled my stomach into my chest again so had to have something done. So had an undo of the Nissen. Less pain after removal of mesh along with top of fundus, but it immediately started herniating again. My second surgery at Mayo I had Dr Bowers and he is pretty awesome and he has a good team. He decided to do a gastric bypass with a twist.. still not sure what the twist part was. My espophagus decided to shorten… like a 1% chance of that happening. I was in the hospital about 3 weeks. When my esophagus shortened it caused one loop of intestines to come into my chest and a tiny leak and an infection came with the leak. I have a week I remember very little of. I wound up with a feeding tube for over a year and another surgery 8 months after that surgery.. would have been sooner, but insurance slowed things down. Two more loops of my intestines came into my chest before that third surgery… oh joy.. painful!! I have to eat something often to try and maintain weight…. a struggle. I have no appetite.. food does not taste like it used to. I am still under Mayo Clinic care, but just the gastro doctor.. Dr Francis. She said I was a bit of a celebrity there and she knew all about my problems. ha! If my swallowing does not get worse I will not go back until next August.. if worse I will go back sooner. So far it is okay…. just some foods I cannot swallow.

I am sorry for all of your turmoils. I wish you wellness… hope for the best for you. I don't think this is a good surgical method. So many failures, so much pain and misery. All of us had the surgery to get better… not worse… or expect yet another surgery years later. The medical field needs to rethink, remodify this procedure.

I have had 2 lap nissens in the last 18 months. I learned last week that it has failed again. I have horrible gas, nausea, dysphagia and some reflux. I am so very discouraged at this point. I have been referred to a surgeon 2.5 hours away from home. He can't see me until December and I'm worried that is too far out. Does anyone have any suggestions for me about what I should expect next? Thank you so very much!!

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