Fundoplication Redo - Toupet Fundoplication - Still swallowing issues?

Hey all!

Really would need some help and experiences from similiar situations...

So I had a basic Nissen fundoplication done about a year ago(May/06) for severe LPR reflux and regurgitation that was totally uncontrollable even with meds and diet etc. I lost like 15kg in six months before the surgery since I wasnt able to eat almost anything.

Ever since having the Nissen done, I had MASSIVE swallowing problems that never ever went away after that. The wrap seemed fine and normal, not too tight either, but the swallowing just didnt work right. So I had botox injections done 2 times during last year to help the swallowing, which eventually temporarily helped the swallowing, but caused horrible reflux again as a side effect on both times. So that was a treatment they simply couldnt continue anymore and I refused to do it again as well.

After those botox'es and having spent quite a lot of time in hospital this year there was tons of different tests done about the swallowing. Basic barium swallow and barium swallow with cookies, banana, thicker liquid etc along with new manometry test. Barium tests showed liquids jumping some up and down but "eventually" going down and with the thicker food the banana got completely stuck at the upper part of esophagus, not going down until I had lots of water given to help after sometime of waiting. The manometry showed the "free drinking" part going bonkers and water jumping up and down and not going down on first tries, along with the snack bread they tried gave similiar results. None of did go down properly on first swallows.

So finally there was some "real proof" of my swallowing being wonky after the fundo. And I propably still had some effects of botox going on at the testing situations. And a redo was ordered to break down the Nissen to partial fundoplication, which was chosen to be the Toupet one.

During the redo surgery they suddenly found out that my esophagus was stuck at my hiatus(???) and they had to seperate them then, along with the fact that they couldnt suddenly get the big endoscopy tube through my Nissen wrap right away and had to try it several times. In none of the endoscopies I've been through during the last year that had happened. The tube always went through normally. So was there still actual tightness on the wrap eventually then? This all made me so confused.

Anyway! The redo was done 2½ weeks away at 17/5/2017. Had to stay at hospital for few nights. The night after surgery was the best I've felt in a year, since I felt not sick due no food or anything in my throat or airways and I BELCHED on the first night, which I had not been able to do for a long long time. I was only given water at that night but it felt going down well. After that first night things have only gotten worser and worser and i've gotten really depressed by now, when I was hoping to be cured finally and be able to start living normal life again...

I've been on liquids and mashed soup diet only along with my must-to-take meds(crushed if possible) ever since the surgery and havent tried anything more, since even those dont seem to go down well. 3 weeks mark is coming in 2 days. And almost every day it has felt that the swallowing has gotten worser. And all issues I had after Nissen are all there still and possibly even worser than before the redo. EVERYTHING I put to my mouth bounces back and forth and doesnt go down properly. Constant lump/food feeling in throat, things come back to my mouth, back of the throat and even go up to my nose, causing constant really bad tasting post nasal drop, runny nose and feeling like I got sinisitis going all the time. All the food that I eat or drink TASTES and SMELLS in my mouth and nose for hours afterwards of taking em and even on the next day you can taste and smell what you've eaten yesterday. Especially milk and dairy products are absolutely horrible since they jump back and taste like a bad buttermilk. All day. And it BURNS the throat all around and the airways.

This is what I had during the nissen and botox and all. Constant burning, chronic sinusitis, chronic laryngintis due food not going down and jumping back up. Chest pains, burning in the esophagus, mouth, throat and nose. Tasting what you've eaten all day. And the post nasal drip tastes like FOOD i've eaten every day.
God forbid if you took something spicy stuff or alcohol or anything, it could make you sick for weeks.
I've got constant horrible taste in my mouth and same goes for the smell at nose, at times even rotten kind of thing. It doesnt go away. Nothing helps. Not sinus rinsing either. Only option would be to stop eating I guess? I've got all the same LPR symptoms and worse than before, but only from food not going down to stomach and jumping back from esophagus. Voice is really hoarse too now due to the burning etc.

Why has nothing changed when going from Nissen to Toupet? Or gotten even worse? Please tell me this is only the swelling again(peaking too?) and the recovery and it will get better.... And/Or is it harder for people with swallowing/motility problems to recover too and get the very same symptoms for a while before it gets better? Is it just the food and even liquids sitting at the wrap due swelling? After all there isnt much else to be done anymore after toupet for the swallowing issue.... Or do I secretly have unnoticed achalasia along with the original reflux or what is this? Oh, and I havent been able to BURP even once after the first night after a partial fundoplication either... Which is so weird and worrying, since everyone always tells they can burp with Toupet done and it's the surgery where your burping and vomiting ability is saved much more surely compared to Nissen??

Does this sound familiar to anyone at all? Please tell me The doc is gonna call me at the 20th so two weeks from now to ask how i'm doing and well, it really doesnt seem good at all... And no idea what to do anymore :/

And no I do not have sinus issues, they've been operated too and are totally fine and no siqn of infections. So it's not that either. Been seeing ENT doctors a lot about it and finally someone smart enough said it's because of the esophagus and fixing that is the only way to stop the sinus issues. Post nasal drip isnt supposed to taste like food after all!

Post Edited (Vimbetin) : 6/5/2017 4:24:58 PM (GMT-6)

Unfortunaly I know from experience I wont be able to reach my surgeon who did it by phone before the call time at 20th, since she doesnt take calls in and is too busy. Would need to pretty much go to ER and taken in to get some questions answered. Since she is also the only surgeon in the whole city doing Toupet fundos, so not many know about it as well. Propably wont give an opinion either after a month has passed either.

Prior to the first wrap my manometry showed no problems a YEAR before the Nissen. At 2015. But the reflux got so much worser and uncontrollable after that until the surgery at 2016. They pretty much said if the manometry was fine a year ago, it couldnt have been changed by then. But bad reflux itself can cause or worsen motility problems, right? So all the swallowing problems and test results showing motility problems have been AFTER the Nissen was done, so it made me and everyone think the surgery caused it or there might have been unnoticed motility problems beforehand and full Nissen was chosen as wrong surgery for me as the first place.

The surgeon really didnt give a diet this time more than liquids/soft foods at start and go ahead trying stuff when you feel like you can.... And just said the first few weeks might be challenging. So i've been mostly on liquids and some softs until now anyway all the time. So there's nothing to go back here from that at the moment from that : )

I would have always thought that recovery from Toupet would be easier and I would be able to burp and eat better by now, but nope. : /

Vimbetin:

Unfortunately, these boards have been very slow lately. Have you checked the search option on the Forums?

Sharon

Where did you have your redo wrap and who was your surgeon? I need a redo toupet and I wonder if the dr (she)was my dr

One month post-surgery is really early into your recovery. Keep following the diet that you were given by your surgeon, and remember to still chew to an almost liquid consistency.

Sharon

IMO, you need to give it much more than two months. No matter what you are told, you've just had maor abdominal surgery, I didn't feel much better until around 6 months post-surgery, and the "new" me at one year.

Sharon

Jhbond:

I am in Pittsburgh, PA. Unfortunately, not everyone suffers the same symptoms post-surgery. I never had globus sensation (before or after surgery), sometimes that it caused by anxiety - which is not surprising after surgery and it will go away on its own. It can be because the spinchter has been tightened to keep the acid reflux from coming back into your esophagus. It's something to discuss at your follow-up appointment. My surgeon discussed with me that I would lose the ability to belch and vomit, and that still holds true for me. I never experienced belching as I had before surgery.

Sharon

The symptoms that you mentioned were not what I experienced. I found my biggest issues where following a strict diet, losing weight, and general weakness. I suffered from waves of nausea (which is common), and I took Zofran. I still ocassionally experience nausea (5 years post surgery) for no reason, and I always keep the Zofran with me. I didn't return to work for 3 months. Again, everyon'e recovery is different - I had a bariatric surgeon who performed Nissens on a daily basis and he provided multiple follow-up visits and also an endoscopy to check the wrap.

Sharon