LPR Symptoms post Nissen

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shipboy
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 1/20/2011 10:08 PM (GMT -6)   
I have been suffering with strange symptoms for at least 7 years. Years ago I had regular heartburn, but then it kind of went away. In its place, I was soon having heavy post nasal drip, especially at night, which I frequently ended up aspirating. The mucous was very small in quantity, but very tenacious -- unbelievably sticky. I have seen countless doctors in all specialties. I was originally told that I had GERD and took Aciphex for quite a while. Eventually, I had a Nissen fundoplication. For a few weeks, I thought I was cured -- symptom free. Then my discomfort came back. Then, my docs decided I must have allergies, and I tried many different allergy meds without any noticeably improvement. Eventually I had allergy shots for a year and a half. No resolution.

My symptoms would seem to come and go every couple of weeks. When I had an episode, I would be messed up for two or three days in a row -- coughing, hacking, struggling to sleep, just miserable. I always associated my symptoms to large meals, but had been assured that the Nissen should be eliminating any reflux. An esophogram last year confirmed that the Nissen was intact. I feel that it is working because I find it difficult to burp, and I have no heartburn.

Lately I have noticed a foul taste in the back of my mouth. My ENT first thought I had a fungal infection in my sinus. I religiously followed the prescribed regime (swish and swollow and poor tasting medicine for many weeks). The doc then said that the fungus was gone, but I still was suffering from the same gagging, sticky phlegm, and now I am regularly noticing how bad my mouth tastes. A month and a half ago, he took out my tonsils which he described as a complete "puss-filled mess." Still no improvement.

My last visit resulted in a prescription of Kapidex PPI at 80 mg (the highest dose). I think they now call this "wonder drug" Dexilent. Anyway, I have seen improvement )over a short time) with my sticky phlegm. But now I have bad stomach aches and occasionally I feel like I'm having a heart attack. After a while I am able to force a few small burps which seem to give me relief.

I am in a quandry. Any help or guidance, especially from a "holistic" or "naturopathic" perspective would be welcome. I have tried diet modifications (no coffee or alcohol, no chocolate or mint, no late night eating, etc.) and I slept with the head of my bed elevated for many months. I have noticed that I can feel phlegm coming up my throat within minutes of many meals, even small breakfasts. It happens so fast that it is hard to believe it is a reaction to refluxing acid since I am upright.

Please help if you can.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/21/2011 5:01 PM (GMT -6)   
I wonder if you have food getting stuck at your wrap? Did the doctor do a barium swallow on you?
Joy

shipboy
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 1/21/2011 7:52 PM (GMT -6)   
I did one right after the Nissen, when I noticed that my symptoms had not resolved. Everything reportedly was A-okay. I am pretty certain that I am refluxing -- I can feel my throat burn after some meals and other reflux type symptoms. The mystery to me is that I am pretty certain that the Nissen is intact -- I can hardly burp. I think that this has something to do with my stomach aches. I guess the PPI is working because the sticky-phlegm issue is not so noticeable. But I feel like I have a slight case of the flu since I started taking the meds.

Thanks for your interest.

Terry

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 1/21/2011 10:35 PM (GMT -6)   
Hi Terry,
Welcome to Healing Well! So sorry to hear you're having so many problems. Unfortunately, those of us with atypical symptoms sometimes don't get complete relief from the Nissen surgery. I had the surgery in 2009 after at least four years of horrible, uncontrollable asthma. My docs kept sending me to the GI doc, (I even switched GI docs in hopes of getting someone who would help me), and test after test were not conclusive, and it took a lot of communication from my asthma and family docs to get him to even consider surgery for me.

Finally I had the surgery (this forum was a godsend) and it definitely helped my symptoms. That said, it hasn't totally eliminated my reflux-related lung reaction. While they're much milder, and less frequent, and I'm no longer on high doses of steroids as I was prior to the surgery, I do get some reflux.

I also had a barium swallow, which showed no reflux. After moving to a new city, I was referred to the best Nissen surgeon to see if I needed a redo (My asthma doc here was certain I was having reflux, and he requested the testing). I had the complete battery of tests...barium swallow, endoscopy/biopsies, manometry, and 24 hour PH monitor. Long story short, he said my wrap was perfectly intact, and that he would not consider a redo. There was a problem with the 24 hr monitor, as they had a virus corruption in the computer. It came up with a Demeester score of 10, which is considered "normal". When I questioned the score because of the computer, he said that he wouldn't bother doing another test, because he would not do surgery on an intact wrap. He also said that a "zero Demeester" score was not possible, as it would require such a tight wrap that it would cause eating difficulties.

So, as my lungs are very sensitive, even a tiny amount of reflux from time to time gets them going. Like you, it's intermittent...every so often...and when it happens, I can feel it.
If I get a little reflux right after a meal, I can immediately get a wheeze in my lungs, so I can identify with that reaction. When I have a true reflux episode, I can the burn at the wrap site. When I have a bigger episode, I can feel a burn at my wrap site that continues after the other symptoms disappear. It always takes several days for it to heal.

Oh, I do wish that it were a more perfect surgery, and all my symptoms were gone forever. That, however, is not in the cards, so I just suck it up, and deal with it. When I told my GP after the surgeon's report, that I guess I have to suck it up, he said no...but then he couldn't figure out a way to put it more nicely. That's reality. Maybe a redo to tighten the wrap might be in my future, but only if (heaven forbid) my lungs get bad again.

With all this, I still am glad I had the surgery. I'm much better than I was then.

I hope you find an answer to your phlegm issue. I also suffer with postnasal drip, but have allergies as well, so it's not clear-cut.

Good luck, and take care.
Denise

shipboy
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 1/22/2011 1:09 AM (GMT -6)   
Denise:

Thanks so much for your thoughtful response. After being around the block seeing so many doctors, I certainly empathize with you and your struggle. I am hoping someone can explain how I can still be refluxing with the Nissen and high levels of PPI's. I started taking two 20mg doses of Prilosec about 12 or thirteen days ago. Then, because of stomach aches, I was switched to Dexilent (used to be called Kapidex) at 60mg once a day. for the most part the sticky phlegm, throat clearing, and post nasal drip have gone away. I still have a pretty regular burn in my throat and foul taste in the back of my mouth. Also, I now have a low grade stomach ache most of the time. I'm hoping that this is a side effect of the medicine and that it will eventually go away. I think an occasional attack of reflux symptoms would be more tolerable than constant flu-like symptoms.

Anyway, thanks for your kind words. By the way, have you tried all the PPI's out there? What do you know about them? Do they work immediately or do they take days or weeks to really kick in? I have taken most of them in the past, but never more than the basic dose, usually 20mg. once a day. I don't really know what to expect for this higher dose I am taking.

Very appreciatively,

Terry

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 1/22/2011 10:12 AM (GMT -6)   
Hi Terry,
I started out 20 years or so with 20 mg Prilosec. As my LES weakened over time, and my asthma got worse, I was upped to 20mg twice a day.

I still had some breakthrough reflux (with continued lung reaction), and was moved to Nexium 40mg...first once a day (before dinner) then twice a day.

Throughout this time I was still having some asthma issues, but I have severe outdoor allergies, and take shots for them. Therefore, sometimes my asthma issues are clearly allergy related--other times likely reflux related--and often a combination.

When my asthma worsened, my primary care doc added Zantac 300 at bedtime.

My stomach is very reactive, and it doesn't take it much to get going. During one episode brought on by an antibiotic (often antibiotics cause me problems...the only ones I can take without severe problems (as far as I know so far) are amoxicillin and Z-pac) I ended up hospitalized for severe asthma.

When hospitalized I was put on 40mg Protonix before breakfast and before dinner. At that time (about 5 years ago), Protonix was the gold standard.

Fast forward to now...When I started getting some asthma symptoms (actually just some mucous in my lungs--not full-blown asthma), my allergy/asthma doc put me back on Protonix 40mg before breakfast and dinner, and 300mg Zantac at bedtime. I stayed on that for a while, but when my lungs improved I backed off it. I tried to go with just Zantac morning and night, but the tablets (2 150mg) are big enough to be hard to get through my wrap. I find them very irritating. I'm thinking of moving to a lower dose, so I can get a smaller pill.

Anyway, when things are going well, I'd like to use just Zantac, but I'm not sure I'll be able to. I am generally taking 40mg Protonix before dinner, and Zantac when I get up. When my stomach flares up, I go to 40mg Protonix morning and night for a little while. I'm trying to take the least amount of PPI's I can, so I'll be fluctuating between doses.

It does take 2 weeks for PPI's to establish themselves and be at peak effectiveness.

Have you tried Gas-X when you have a stomach ache? I discovered that when I have one, it's often trapped gas, and the Gas-X works great.

If you're just describing an irritated wrap area, that's another story. Maalox is a lifesaver there. It just takes time for the irritation to go away. Healing GI tissue is a challenge, and it takes patience and time.

I was told that the surgery would not guarantee that I'd be GERD medication free. I guess I wish my surgeon had made my wrap a bit tighter, but I've enjoyed not having the typical bloating symptoms, and I've never had trouble swallowing food. I do think some gets hung up at the wrap are a bit, but goes through with an extra swallow. I can feel water sitting there and draining through, which is the problem with the Zantac tablets. It's as if they get hung up at the wrap site and clog it up even more. Several times I've ended up with lung irritation from the water that is slow to get through when I take them. I'm going to look into a liquid form.

I would expect the higher dose should help your symptoms. You may be like me, and have to "suck it up" and deal with a low level of symptoms from time to time. Wish I could say it isn't so, but I'm sure we're not alone.

That said, I'm not one to cry about the surgery. It is what it is. It made a huge improvement for me, and although it left me with some quirks, I just accept them as a trade-off for the life threatening condition I had before surgery.

I'm glad you've joined the forum. It's a good place to be. You can talk to people who actually understand what you're going through...it's not like that in the big wide world! Even docs don't understand the way people here do!

Hope the meds do the trick for you!
Hang in there.
Denise

Shelby13
New Member


Date Joined Mar 2011
Total Posts : 2
   Posted 3/16/2011 11:39 AM (GMT -6)   
My dilemma is that I am not sure if I should have the laproscopic nissen surgery.  I do not have heartburn but rather chronic cough, asthma, sinus issues, breathing problems and loss of taste and smell.  I have read that a patient with atypical symptoms does not fair as well.  I am not sure I want to go through the surgery.  My symptoms started three years ago and I have had 3 sinus surgeries.  Somehow the thought of messing around with organs just freaks me out.  Everyone is encouraging me to go ahead, but I have to feel comfortable before I commit. Then to hear that you still need to be on meds and still have symptoms make me crazy.
Has anyone felt like me or have I coughed so much that my brain isn't functioning?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/16/2011 4:36 PM (GMT -6)   
You sound like me before surgery. I had a partial wrap (270 degree) and it stopped my problems.
I know how you feel about having someone mess with you. I was worried about it alot. However, the great thing about it is you sleep through the worst of it.
Joy

Shelby13
New Member


Date Joined Mar 2011
Total Posts : 2
   Posted 3/17/2011 7:21 AM (GMT -6)   
Hi Joy,
Thanks for the response. Did you have the constant coughing? I seem to read an awful lot that the coughing is not usually helped with the surgery. And since this is my main problem, I don't want to go through this if the coughing won't be resolved. ANd I can't imagine coughing with this wrap and the sutures in place. Can I loosen the wrap with the coughing? From reading on this site, it seems that many have such severe problems that they can't function. My problems get severe at times but I am able to live my life and work and enjoy my grandchildren so this is a very hard decision for me. My surgeon has said that the problems I am having could start to affect my lungs but at this time, my lungs and my esophagus are fine. I do have a sliding hernia but I think that can be watched also.
Can you tell me how you are doing and what the surgery and recoup was like? I fear the recuperation more than the actual surgery.
Thanks so much.
Shelby

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/17/2011 7:08 PM (GMT -6)   
Yes, before the surgery I coughed constantly. Nothing stopped it. The surgery stopped it for me.
I caught pnuemonia a month after the surgery and coughed for a solid month, but my stitches held tight. Denise here had the same thing happen to her.
My recovery went very smooth. Stayed one night in the hospital and only asked for pain medicine once. Went home and mainly took pain medicine for three days only to sleep. Was back at work at day 14. Followed the restricted diet for four months. It wasn't too bad.
Joy

somedaysarediamonds
Regular Member


Date Joined Jul 2011
Total Posts : 363
   Posted 9/10/2011 10:03 AM (GMT -6)   
I'd LOVE to get ahold of Terry/Shipboy because this is EXACTLY what I am doing. EXACTLY.

I notice he posted three times on this thread and never came back.

Does anyone know if he got better from the Dexilant?

I'm going nuts with all of these same symptoms which ironically got WORSE after NF.

I notice from this older post that Joy seems to relate to a degree.

Info appreciated.
Rita
Falling down is part of life, getting back up is living. -Unknown

Lap Nissen Fundoplication August 1, 2011
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