@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.

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!!

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.

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 - 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.

@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.

@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

@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.

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.

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.