Nissen Fundoplication Experiences?

[Tuesday]

Has anyone else here had a Nissen Fundoplication? I've been dealing with severe GERD for the past four years, and I've exhausted every PPI available with little improvement. I've been recently diagnosed with hiatal hernia, esophagitis, gastritis, duodenitis, and polyps.My GI doctor is sending me to a surgeon to discuss getting the fundoplication.

I've done a lot of research on the surgery and what to expect, but of course things change when you bring Dysautonomia in to the mix. Since I won't be able to eat solid food for several weeks after, I'm trying to figure out how to keep myself healthy. I normally take many different meds, so I will have to see if there are liquid versions available.

What was your experience like? Any special considerations for dealing with recovery with Dysautonmia? Did you have trouble getting your medicine, or staying hydrated? Anything you wish you had known or asked before hand?

Thanks!

[Katybug]

I haven't had it but my mom has. In the way of nutrition, we pureed lots of vegetables for her. If you can swing it, maybe a nutribullet would work for you if you're worried about nutrition. She had a pretty decent recovery from it and she does have chronic health issues. It did help her quite a bit as 2/3 of her stomach had protruded through her diaphragm. It was pressing on her aorta and also causing her to aspirate stomach acid when she slept which caused her to have adult onset asthma. Her asthma improvedngreatly after the procedure. They warned her it might not go away completely. Her reflux is soooo much better.

[MightyMouse]

My doctor wants me on the GAPS diet before we discuss surgical options... however, my mom will have it done in 2 weeks so I can tell you more then. (hers is for treatment of achalasia).

Nina

[sue1234]

Katybug, I'm curious what your mom felt like with it pressing on her aorta? The reason I ask is when I sit up in a regular chair, I feel like my stomach is pushing up through my diaphragm, giving me a pressure feeling from that point up through my chest and head. Then, if I don't recline or change position, I start getting a pulsating feeling in the lower chest area and then I begin feeling anxious and lightheaded at the same time. It really gets bad. That's why I haven't been able to sit up in normal chairs for a few years. I have been diagnosed for a decade with a "small" hiatal hernia.

[Katybug]

Sue,

I just saw your question. I'll have to ask her tomorrow and let you know.

[sue1234]

Thanks. I have been telling my doctors for the last few years regarding my sitting up or bending forward for more than a second, it feels "like my circulation is being cut off". In those exact words. That's why I'm really curious how your mom describes what she felt.

Heck, even when I'm extremely bloated in my stomach area, it feels like my circulation is getting compressed and cut off. I end up pacing the room, hoping things will move away from the exact area they're at because it causes anxiety/lightheadedness.

[micheller]

I've had it done 3 times within a 2 year span. This was before my pots diagnosis. The recovery was as expected. Tender for a few weeks, lived on liquids for a week (anything I can see through for a 2 days then I could add any liquids), then anything pudding consistency for another week (thinned mashed potatoes, yogurt, ice cream, overcooked oatmeal), then as tolerated after that. No red meats, anything crunchy, carbonated (couldn't burp) for 2-3 months. My first nissen worked well for about 5 months. It seemed once the swelling subsided, all my symptoms came back. I went back in at the 6 month mark and had it tightened. The same thing happened so had it tightened again. Once again all my symptoms came back within a few months. My surgeon and GI pretty much gave up and sent me to a GI in Milwaukee that suspected pots on the first visit. I had a hernia repair with the first one and it didn't make any difference with my symptoms. I've tried all the meds and they seem to work for a few months before they are ineffective. My GI did a few esophageal biopsies because the acid burn was so bad he thought I had cancer. I couldn't eat, drink, recline, sleep and my drs couldn't figure out what was going on. I was given H2 blocker, vicodin, and carafate to see if I could get some of it to heal. In my case, there's nothing surgery can fix. It's a nerve issue according to my GI and neurologist. They said if I was 'normal', no pots or nerve issues, it most likely would have been a success. But because pots messes with digestive tract it was a bad decision to poke the bear and cause more issues that weren't there previously. I do have some complications from the nissens like food getting stuck at the wrap and if it can't go down, it comes back up. I have to chew everything to complete mush. I have trouble swallowing liquids as they seem to puddle there or take a while to go down so can't drink/eat while laying down or reclined. I also have IBS and gastroparesis so taking domperidone really helps with all the GI symptoms. So for me, the surgeries were completely pointless.

I did see another surgeon to fix the damage the first 3 caused and he brought up a less invasive option called TIF. Instead of using sutures and making abdominal incisions (I had 6 and they nicked a few ribs), they use H clamps and they go down the esophagus just like an EGD. The post diet requirements are about the same but there's no outside incisions. My GI in Milwaukee (I have a local one also) wanted me to redo the manometry before he would consider doing any repairs and I can't tolerate the way they do the test at his location.

Given my experience, be sure to discuss all the options. There is also the LINX which is a band of magnets they put around the sphincter instead of sutures or clamps. It's designed to be more like the natural state of our esophagus because it can stretch and contract during and after swallowing. There's no diet restrictions with the LINX. Many people have issues with the nissen like trouble swallowing, food getting stuck, can't burp which causes pain and bloating but there's also people that it relieves symptoms. Most of them still have to continue some kind of reflux med after the nissen. I found an amazing gerd forum that I have frequented over the 5 years I've had it. I'm not sure if we can post other forums on here but feel free to pm if you want to read it over.

I don't want to scare you out of it but just make you aware of the after affects that can happen. The surgeon that did mine hasn't had one fail in over 27 years but make sure your surgeon has a very high success rate. Ask a ton of questions about his experiences with performing the surgery. Do as much research as you can. Good luck!!

[sue1234]

Tuesday, this may be over-simplicated, but have you had your calcium levels checked on various occasions? High calcium caused by hyperparathyroid can cause big problems with GERD, among other things. I see on Micheller's signature that she lists anxiety and depression, which can also occur with it. If there is any suspicion of it, make sure that along with calcium, they check ionized calcium and PTH.

[Tuesday]

Thanks, Michelle! Your situation is exactly what I'm worried about, especially considering I don't know the underlying cause of my Dysautonomia yet. My doctors suspect either EDS or something autoimmune.

If you don't mind my asking, what are the complications you've experienced from the surgeries?

Right now I'm at my wits' end. I've been dealing with severe symptoms for years. During the 48 hour ph study the monitor recorded 22-24 instances of acid/bile reflux per day with regurgitation. I've woken up in the middle of the night choking on acid several times, once so bad I thought for sure I would choke to death. Nothing is really comfortable to eat, everything causes pain (some things more than others). I'm taking PPIs 2-3 times a day plus using tums/gaviscon. I've tried eating nothing but bland, low-acid food with little to no improvement.

I used to have chronic recurrent sinus infections, which I now understand is from the reflux. Since going on PPIs I have only had one or two in the last few years, instead of the 3-4 per year I used to have. But I still am in pretty much constant pain from my esophagus on down.

I'm still struggling with the decision, but I'm leaning towards gambling on the possibility of relief, even if it's just for a short time. I've been reading up a lot about all of the surgical options, including the TIF and the LINX. Unfortunately there aren't a lot of places near by me that seem to offer the procedure. I've found another GERD forum too, that seems to have a lot of great info, but it's hard to know how or if any of it is still relevant when you're dealing with POTS!

Thanks so much everyone!

[micheller]

I get food stuck at the wrap if it's not chewed enough. I have liquid that will sometimes puddle there or it takes a while to go down. If I drink something really cold I can trace with my finger how slow it goes down. I can't have anything water thin or it comes right back up. I honestly did it out of desperation. My pots and gerd started at the same time, while I was pregnant with my third. My gyno kept telling me it's pregnancy heartburn and it would go away. The pots symptoms I was experiencing before pots diagnosis I thought were from lack of vitamins and food. I literally couldn't eat or drink more than a sip to take my H2 or PPI and maybe half a handful of cheerios or a few saltines for just over 2 years. Before I had my first nissen, my GI was starting to pull at straws since he was clueless and suggested I get a tonsilectomy. I did that when I was 27. I'm not sure why he thought that would help. He said they were inflamed. Well obviously considering they were washed in acid. Duh! Out of the 7 total surgeries I've had, that was by far the worst recovery wise. I couldn't stomach the pain meds so I had to go without and add in reflux, it was a nightmare. I ended up losing a ton of weight from not being able to eat. I literally lived in my bathroom for those 2 years. I had a pillow, blanket, books, laptop table, laptop. My nausea was horrible. I couldn't move without feeling like I was going to get sick so that was my 'safe haven'. My GI seemed concerned but not enough to do anything. I was eventually to the point where I would have done anything to make it stop and that's when my GI referred me to the surgeon. It was pretty funny actually, my GI's nurse in Milwaukee called me and said he suspected pots and was going to set me up with a neurologist there. First thing I said was 'I don't smoke pot!'. Haha!!! She had to explain it to me. Then I said 'I came there for reflux, not for another diagnosis.' :/

As far as testing, what have you had? I've had them all multiple times. I've had the bravo, manometry, swallowing study, more EGDs than I can count, gallbladder ultrasounds, abdominal scans, blood work, allergy tests, it goes on. They also said it was H. pylori so I took antibiotics for that. I've had a few tests come back normal like the bravo was once in normal range. But what I found weird was every time I went under sedation (which I'm now immune to) the next day or 2 I didn't have very much reflux. I'm not sure if it paralyzes the nerves or...something else temporarily. I was so relieved when the EGDs I had after my nissens were still showing acid burn because my surgeon told me it was next to impossible, that he's never had a failed nissen. Ego much? I was lucky to be his first.

I've learned to just kind of live with it. It's become the new norm. But in the beginning it was very hard for me to accept the whole mess of gerd and pots. It flipped my life upside down, as it does many. All I could think about was everything it's taken from me. I'm pretty much a home body, I get bad motion sickness so I have to plan when I have to leave and not eat/drink for 2-3 hours before that or pots/gerd/nausea kicks into full gear. I think the biggest thing is finding your triggers. If you haven't, keep a food journal for a month or 2. I've cut out all dairy except for cheese, try not to have red meats since they are harder to digest, I try to steam veggies as much as possible instead of raw. I haven't tried juicing because the texture would make me gag. I'll stop here since I wrote a novel but feel free to ask any questions.

[Tuesday]

For testing, my GP ordered some testing to rule out H Pylori. I've continued to test negative for that.

I've had two endoscopies, one with the Bravo ph monitor, and a barium swallow. The first endoscopy showed esophagitis and gastritis, and the hiatal hernia. The barium swallow revealed a filling defect, so the second endo was ordered. During that they took out several polyps, and told me that my duodenum showed inflammation which is normally seen in celiac patients, but because the villi were in tact it wasn't actually celiac. All biopsies came back normal, no Barrett's.

My Bravo was done while I was on medication. I had 22 events of acid/bile reflux with regurgitation the first day and 24 the second. My de meester score was 9.2, which isn't bad, but considering I was on all of my medications (Dexilant, Lansoprazole, and Ranitidine) it's not great.

I've been eating gluten free for about a year and a half now, and don't usually eat dairy (other than cheese) and red meat, so I feel like my diet shouldn't be contributing that much to any issues. But I've also tried eliminating anything with acid for weeks at a time and didn't really see an improvement, so I didn't stick with it much.

I'm very torn on this. If I had a clear diagnosis of EDS I think I would not even consider the surgery, but the time I went to a rheumatologist to get it ruled in or out, he told me I didn't "look" like I had it. I'd need to convince my GP to refer me to someone else if I wanted to try again, and that's been a hassle. I may try to get an EDS diagnosis ruled in or out for sure before I go ahead, but I don't know how long that would take.

It's all just so frustrating!

[sue1234]

I had all those tests for my chronic bloating, although I don't have any heartburn. I had a 24-hour total of 77 episodes of reflux. My score was 7.7.

[micheller]

I've had the bravo twice. One was in normal range even though I was having symptoms. I'm not sure what my scores were exactly on the others but they were pretty high. That's weird they had you on meds while doing it. I had to stop them 7 days before getting the test. It was the longest 7 days. Lol. Honestly, I haven't noticed a huge difference if I eat something acidic or not. I've eaten pizza and spaghetti with the same results as grilled chicken. I've started combining my H2 blocker with my PPI and it seems to have helped a smidge. Have you tried carafate? It's soothing but doesn't last long. I've also tried Questran because my GI said I had bile in my stomach during one of my EGDs. I would love to have an answer and a quick fix.

[IceLizard]

Hi Tuesday,

I know you are not sure whether you have EDS or not, but hiatal hernia is common in the EDS population. So, if you'd like to talk to more people about their experiences with the surgery, you can head over to these forums: http://www.inspire.com/groups/ehlers-danlos-national-foundation/

Best wishes!

[Tuesday]

Thanks everyone! I did start reading up on some EDS forums about hiatal hernia but I hadn't found that one yet, thanks!

I think they kept me on the meds during the Bravo because they wanted to see just how bad it was even with medication.

I'll definitely bring up my concerns about EDS or an autoimmune source of my autonomic dysfunction when I have the surgical consult. It may be worth waiting to rule something in or out before I make the decision on the surgery.

In the mean time I've got a purse full of prevacid, gaviscon, ranitidine, and dexilant to tide me over.