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My symptoms are the same/slightly worse after surgery

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Posted 12/11/2010 8:40 PM (GMT 0)
Hello Friends,

I had a 360 medium floppy wrap 20 October and have posted a few messages on this forum since then, as I made my recovery.  It has been a rough few weeks, though I appeared to turn a corner after about week 5/6.  I had a few good days, where the sore throat stopped, the bloating eased and the burning sensation (identical to heartburn) also seemed to taper away.  However, I have in the last few days gone backwards.  The sore, scratchy throat has returned (my pre op reflux was always LPR ie in the throat rather than heartburn) and I have a relatively constant burning sensation behind the breastbone, that I can only assume is heartburn.  The wrap site must be settled now (entering week 8) and I haven't done anything to aggravate it.  I am on solids and have been for 3 weeks or so, but always eat carefully.  So I wonder whether the wrap is effective or even failed.  The other symptom that makes me question the wrap is effective is the water brash ie excessive salivation.  it is horrible, frothy stuff that stings my throat all day and even wakes me during the night when I have to use a tissue to get rid of it.  So sore throat, water brash and heartburn are making me think the wrap is not up to much.  My surgeon (very, very experienced) said he gave me exactly the type of wrap I need - not too tight, not too loose.  I have had few problems eating though was careful to observe the 2 week liquid, 2 week soft protocol and can burp, though not as largely as before.  However, the burping is becoming easier and easier.  I also have an unpleasant gurgle a lot of the time when I swallow, precisely at the wrap site.  It may be my imagination but this gurgling seems to go hand in hand with the occurrence of bad h/burn. 

I am going back to the see the surgeon, probably after having a barium swallow.  I really don't want this x-ray, so does anyone have any ideas on whether I should suggest an endoscopy to inspect the wrap, rather than a barium swallow?  the barium swallow is a last resort for me due to the high radiation dose and my skin cancer history.  Also, what do people think about the water brash after week 7/8 and the constant heartburn feeling?  Are these still to be expected at this stage of recovery?  I guess it could be caused by food staying back at the new valve, but given the ease of swallowing and burping, this seems unlikely.  the water brash and sore throat have really accelerated in the last few days, so something must have caused it.  Wrap failure? 

My current view is that I would prefer to go back to how I was before the op, on the PPIs, having to be careful with food etc.  My symptoms are the same/slightly worse now, though I am hoping this is a short term issue.  I wonder about reversal, as the original wrap that God gave me is apparently still functioning as before, with the new wrap over the top. 

thanks everyone and I hope you are all getting the answers you need.

Simon

I gave your thread a title.  :)

Post Edited By Moderator (stkitt) : 12/11/2010 4:47:45 PM (GMT-7)

Posted 12/11/2010 10:11 PM (GMT 0)
You're still in the healing phase so you can still have issues at times. Are you keeping your servings small? You should be at no more than a cup of food a meal at this point.
To be safe do the swallow.
Posted 12/11/2010 10:46 PM (GMT 0)
thanks Joy - what's the deal with the water brash?  I have never had this before.  I am eating pretty much normally now, as no problems swallowing.  could eating too much cause the waterbrash?
Posted 12/11/2010 11:12 PM (GMT 0)
maybe...Some people have that issue for awhile after NF. Not sure why.
Posted 12/12/2010 4:14 AM (GMT 0)
Hi Maxevie,
Sorry to hear you're having problems with your recovery, but keep in mind that at two months, you're still in the early stages of healing. Many people get the feeling of heartburn during their recovery stage, and as time passes it subsides. I totally get your frustration and worry, as it's very common to panic and think that the surgery was a failure. It's far too early to be able to assume that.

It takes 6 months for the majority of healing to take place, with the rest occurring over the first year. Someone here told me that the esophagus is a "dumb organ" and that it interprets all pain as "heartburn".

Try not to jump to conclusions, and give your insides a chance to heal. Your upper GI tract has been totally revised, and it will take time for the healing to be complete and your stomach/esophagus to adjust to the changes.

Glad you've joined us, and welcome to the Wrapped Club! yeah yeah yeah yeah yeah
Hang in there, things will get better!
Denise
Posted 12/12/2010 4:54 AM (GMT 0)
Hi Maxevie

I had my surgery the same you did, with a very experienced surgeron.

4 days after my surgery my acid reflux symptoms returned too.

I have burning tongue and nose and sore throat sometimes.    Also a burning at the wrap site sometimes.

I also have that nasal drip feeling.   I cant tell if its nasal drip or acid coming up.

I dont have the water brash.

This sure is awful annoying isnt it.  

I will probably be calling the surgeon on Monday to see what they say.    I dont think I can stand this burning too much longer.   Its really getting to me.    The funny thing is mine leaves at night.  Or seems to anyway.   I dont wake up with it anyway.    Then after I am up for a little it comes back.

I was wondering if it could be acid rebound from quitting my protonix but havent been able to find too much information on that.

Ok best of luck to you.

Posted 12/12/2010 2:20 PM (GMT 0)
thanks Joy, Dencha & Mitsie.  I will go for the barium swallow to see where things stand, as I am doing my head in worrying about all this.  I so hope you are right about the early stages of recovery, but it just seems strange to take these steps back after a good period, and the constant h/burn feeling that hasn't eased much, if at all, since the op.  I took a PPI today (protium 40) which has made no difference to the burning sensation in chest or throat.  maybe I should eat less, but my surgeon didn't mention anything about this.  he only said 2 weeks liquid, 2 weeks soft, then ease back to normal diet.

Mitsie - very strange you say that your burn goes at night, as so does mine.  I didn't think this worth mentioning, until you wrote it.  this may be because we are not using the LES for a few hours at night as we are not eating and not swallowing as much.  My burning returns soon after waking.  How long ago was your surgery?  I don't think the acid rebound phase is supposed to last more than a few weeks post surgery.

thanks again for responding everyone.  Good luck mitsie - let us know how you get on with the surgeon. 

Posted 12/12/2010 4:30 PM (GMT 0)
maxevie

My surgery was the same day as yours.   October 20 this year.

Today my burning returned this morning around 10am something like that.  I was up at 8am.

This is so frustating isnt it.

I read somewhere that acid rebound could be anywhere from a week to three months.   I didnt ask any of the docs about this.

 

Posted 12/12/2010 8:19 PM (GMT 0)
Mitsie,

What a coincidence - our lives changing (hopefully for the better) on the same day.  I am not sure how long the acid rebound takes to pass, though I thought it was a few days/weeks rather than months.  Could be wrong though. 

Yes this really sucks but reading about the vast variety of symptoms and range of recovery time periods of patients on this site, I am trying to be optimistic that these are just temporary quirks during the recovery.  My surgeon was super confident that the reflux was gone and he does 2-3 of these ops a week.  I am seeing him again in a week or so, so will be sure to pin him down on whether he thinks these symptoms are still "normal".

Good luck with your surgeon chat and please let us know the outcome.

thanks to everyone for so generously responding.  this forum really fills the vacuum left by the medical fraternity.

Simon

Posted 12/12/2010 9:52 PM (GMT 0)
Hi Maxevie (and Mitsie),
By all means, STAY optomistic! Your water brash could be water/food that is retained in the esophagus as your wraps could still have some swelling. You may be burping somewhat, and the air throws the water and its contents into your upper throat and mouth.

The fact that you're better at night makes this possibility even more likely. You do still need to take it easy with eating. Surgeons have no consistency in their recommendations. Some go overboard and have people on liquids far too long, and others set their patients free after a few days, with very little guidance (mine was one of those).

That said, you're in the right place to find out what others have found works for them. I was told that if you retain any food at all, it could be irritating to the esophagus and feel like "burning" or reflux. Also, if you are still healing on the inside, normal surgical pain could be interpreted by your esophagus as reflux. That would make sense if you're experiencing it more when you're up and around. If it were true reflux it would be visiting you more at night when you're in a horizontal position!

You are both in the very early stages of recovery, and should not make any assumptions. You're lucky to have each other and the others here who share their experiences. Yes there are a few fundoplication surgeries that go bad, but the vast majority do just fine. Unfortunately surgeons haven't been through recovery, and don't really know what you will experience. In addition, as Maxevie said, everyone's recovery is unique.

Hang in there, both of you. You will heal. You will be able to eat normally (with a few little compensations for the differences that have been created). At four months we went on vacation, and I ate my heart out. Unfortunately, once I recovered, I gained back the weight I had lost, so be careful!

Take care, go with the flow, and surrender to your recoveries. Just follow where they lead you, and try to be patient. This too will pass.
Hang in there!
Denise
Posted 12/13/2010 10:44 PM (GMT 0)

thanks Denise for the reassurance.  I switched to liquids today in an attempt to reduce hold back and the burn, but no change yet.  I have a feeling my doctor thinks I should be ok by now, so we will see what he says next week.  Or it may be the case that he recognises all these side effects but doesn't like his patients to worry unduly. 

I hope the barium swallow is accurate.  If it only shows major reflux and doesn't pick up on those that only have a little reflux but who are hypersensitised to it, then I could be in a situation where the surgeon says the operation was as successful as it can be and that is all he can do for me.  I know that's pessimistic!

Fingers crossed.  thanks again for reading and responding to my messages.

PS bad breath/sour mouth/burns totally sucks!

Posted 12/14/2010 3:58 AM (GMT 0)
Maxevie,
Good luck with your testing. If after the barium swallow you are still questioning, I would guess that a wired PH monitor with multiple sensors would be very informative. Just take it one test at a time, and try to relax and give yourself time to heal completely.

No kidding about the burning, etc. Those of us who have struggled with problems like that understand what you're going through. You're definitely in the right place! This forum was so helpful to me when I was recovering and worried about every symptom or sensation.

Every person is unique, and you had reflux for a long time. There's no doubt that irritation that was created over those years will take time to recover. It took my lungs about two and a half months to begin to recover, and they improved from there.

Hang in there. I hope you are symptom free very soon.
Take care,
Denise
Posted 12/15/2010 3:13 PM (GMT 0)

Mitsie,

Just checking in - how did you get on with your surgeon?  any uodates?

Simon

Posted 12/17/2010 5:29 AM (GMT 0)
Simon

I am bad.   I keep putting it off hoping this goes away LOL.   hmmm wishful thinking.

I thought I was some better today.    Going to call Monday

I will let you know.

Anything new with you?

Posted 12/17/2010 9:10 AM (GMT 0)

Mitsie, barium swallow Monday followed by surgeon consult to discuss the results on Tues.  I am also taking the PPIs for a few days to see if this makes a difference, as this is a good indicator of whether the surgery has worked (I am not 100% convinced that the barium swallow shows v minor reflux - only clear reflux). 

Posted 12/19/2010 5:38 AM (GMT 0)
Simon

Let me know how you make out.    They want me to go to an ENT and see if I have a sinus problem or something else.

I have this nasal drip feeling but cant tell if its nasal drip or acid reflux.   Sure does burn though.   My nose and my tongue too.

Good luck with your tests.

Posted 12/19/2010 10:14 PM (GMT 0)
Simon,
You're right that the barium swallow can't show mild reflux, but it can see if your hiatal hernia is in place, and that is (according to my surgeon) the most common cause of wrap failure.

Keep in mind that a bit of reflux after surgery is considered normal. Even after healing, a "normal" amount of reflux can escape the wrap. Any Demeester score of 14 or lower is considered normal.

I recently had a battery of tests (barium swallow, manometry, endoscopy, and PH monitor) and met with a new surgeon (we moved) regarding the status of my wrap and whether or not I need a redo. (I have asthma and was noticing increased coughing.)

What I discovered was that I have no recurrent hiatal hernia, my wrap looks intact and completely normal, and my swallowing and wrap pressure is good (manometry results).

I also discovered that even after the wrap is done it is expected that there will be some amount of reflux. In order to keep reflux numbers at zero, the wrap would have to be so tight that it would not allow food in.

It's just that the amount of reflux should not be more than that of a typical (non-GERD suffering) individual, who when participating in tests as the control subjects have Demeester scores of 14 or less.

That was news to me.
Hope it's helpful information for you.
Good luck with your test and discussion with your surgeon.
Denise
Posted 12/22/2010 2:49 PM (GMT 0)
It never ceases to amaze me, how we that have had the wrap are left to worry and find things out for ourselves about recovery. Surgeons do not take the time to go into detail, the healing process.  I have learned it all here. We don't know what questions to ask after surgery, we just expect it to be better. Wouldn't it be nice if we were told...6 months to a year....instead of "it will take awhile".  Beleive me, if I have anymore surgery(that was my first), I will have alot more questions to ask about healing. A laproscopic day surgery is misleading for all of the healing a hiatal surgery takes..( my whole stomach was in my chest).

I had mine on Nov 3rd and am now on Prilosec(never took it before). I am wondering how soon, I should try to go off of that. Most symtoms are slowly getting better, but it may be because of the Prilosec. Dr. did tell me when I go off of it, It will be worse for a few days, before it gets better. I read that it is because the acid that was blocked starts to flow again...

Posted 12/22/2010 3:18 PM (GMT 0)
Slowly wean off the prilosec. This is how I got off of mine after surgery.
1st week -one tablet a day perfer at dinner
2nd week- skip every other day
3rd week- skip two days, on one day, off two days
4th week- skip three days, on one day, off three days
5th week- skip four days, on one day, off four days (this is the hardest week, you will get rebound- chew tums)
6th week- skip five days, on one day, off five days
7th week- Skip six days, on one day, off six days
8th week- no pills

This method worked great for me. Once you get past the week 4 it gets easier. I chewed tums and took a Zantac just on day four of the fifth week. After that bump it was better.
Whatever you do don't go cold turkey. You will suffer greatly.
Posted 12/23/2010 12:41 PM (GMT 0)
Hi Simon

Hope your recovery is making good progress and you're steadily getting well again.

I noticed from an earlier post that you're in the uk - as am I. I'm at the early stages of diagnosis, waiting for barium swallow.
I'm getting a bit ahead of myself, but feel so unwell with my symptoms that I'm trying to look ahead and be practical...just wondered how you went about finding the right surgeon.
Have you been able to work through the NHS to find such an experienced person (hope you don't mind me asking!) or do you think it's better to go private? I just don't know where/how to start the research that everyone stresses is so critical.

Many thanks - and best wishes.
Posted 12/27/2010 4:48 PM (GMT 0)
Hey simon

Was wondering how you made out with your tests.

I have an appt with an ENT tomorrow to see if he can find out why I have the burning in my nose and tongue.   Although I think its some better I still have this problem.   My reg. dr doesnt think its related to the Acid reflux.   Time will tell.

Posted 12/29/2010 1:15 PM (GMT 0)
Hi,
I'm in the same shoes. Had a Nissen last August. Still heartburn, pain, nausea. no swallowing problems, no burping (very little). On 2 Aciphexes per day plus Antacids at will. I feel actually worse than before the surgery. Before I only had it this bad once or twice a month. Now I would have a good few days then it's all back. No sleep, I sleep like 5 hours a day and that makes everything worse. Burning and light nausea wakes me up in the early am and only gets better when I get upright.
Took a barium swallow - perfect wrap, they even made me drink barium upside down to check for leaks. If anything they said the barium sticks at the wrap and I needed two glasses of water to wash it all down. So why would I still be refluxing? Enigma.
Had a HIDA scan - 77% normal. Now I'm at loss about what to do. I'm going to book an appointment in Belgium with one of the experts there, because local medicine sucks here in KSA. Only one hospital in the capital has Bravo test, another one has HIDA scan, etc.
Guys don't make mistake I made, thinking it would be nice to have a free Nissen. My surgeon as I learnt only did 42 of these prior to me, although he said there were no failures yet. So I must be the first :).
No seriuosly, my work, family life is suffering again, as I'm out of this world like I was before the surgery for almost 2 years. People who didn't have GERD don't get it how debilitating this condition is, they think - "oh what is just a little heartburn".
So wish me luck, because I will need it. Maybe I will do Bravo again here to save on expenses, cos my dedictible is $5000 and that's a lot :).
By the way anyone get Nissen from Dr. Salky in NYC? I heard he is one of the best. Also all of you "Hill" Billies, are you doing okay still? I keep my options open including a trip to Seattle.

Post Edited (rummaan) : 12/29/2010 6:20:23 AM (GMT-7)

Posted 1/16/2011 11:21 PM (GMT 0)
Hi Maxevie
I had my wrap 9 weeks ago. Its nice to share experiences on this site.
I have had a pretty good recovery so far, but this week I have had burning all week even when I drink water.
The worst thing I still have since my operation is water brash and a sour taste in my mouth.
I hoped the wrap would end this, but it has been worse than ever this week. I have had a tissue and have to keep getting rid of the water.
Looking at others experiences on here, Im hoping that in time this will disappear as my gullet gets stronger.
Ive taken no PPI's since my surgery but if this keeps up Im afraid I will have to go back to my surgeon to see if he thinks this is normal.
I get some comfort that this disappears at night, so I tend to think its not reflux.
This site has given me more insight into my recovery than my surgeon did, so hearing this can be quite normal Im living in hope.
Hope things get better for you. I know what its like and reflux and all what goes with it is terrible.
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