lpr symptoms back

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joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 2/12/2012 11:12 AM (GMT -6)   
had nissen in 8/31/10. had constant mucous and sore throat throat clearing etc. after the surgery within 2 months the throat pain diminished 50 percent the mucous left. my throat never turned from red to pink but again i was able to eat somewhat normally for a while just some clearing. now my throat is killing again and mucous is constant. i will admit a few months after the surgery i had some dietary indiscretions but i was paper thin. i am now normal weight. i dont think a surgeon will do a redo because gi doc says the wrap is intact. for 4-6 months after surgery rice and hamburger got stuck on wrap and caused horrid pain. it passed and i actually felt reassured the wrap was tight. now nothing gets stuck im bouncing from ppi to ppi. im so depressed. i had almost a year where i felt human again. should i persist on a redo im confused scared and feel like giving up the throat pain is so bad. is there anything new out there there is halo ablation for barrets but nothing for lpr and pained throat. i could deal with it if it didnt hurt so bad ive been here before and dencha, couch tater etc. have always been there to help. im here again and i need some advice im eating such bland crap and only dring water. i swig carafate in my throat 10 times a dat and hold ice in my mouth on my larynx for relief. any tips. god i got a good year and over the last 5 to 6 months its gotten bad again. barium swallow says spontaneous persistent reflux to clavicle gi nurse says thats normal but i hear many say the have normal bariums with no reflux. help

Faith224
Regular Member


Date Joined Sep 2011
Total Posts : 299
   Posted 2/12/2012 11:27 AM (GMT -6)   
Hey Joe,

I'm so sorry to hear that your LPR symptoms are back =(....I have LPR too and it is absolutely awful. I have no experience with the nissen whatsoever but I know that some LPR symptoms still persist despite the surgery for some, while others experience relief of these symptoms for years to come. Have you ever been tested for neuropathy? I have read stories on other forums about people who who were in the same boat as you, and discovered they had neuropathy and were treated for that and all of their symptoms disappeared. Not sure if this is your case, but just wanted to share that with you. Are you in the NY area? If you are, I would suggest making an appointment with Dr. Koufman.

I hope you feel better...sorry I can't be of more help but I am sure one of the more knowledgable nissen members on this forum will provide you with good advice soon

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/12/2012 12:10 PM (GMT -6)   
 
I am sorry to read of your problems.  I am wondering if your GI physician did an endoscopy to take a look and see what may be going on.  It does sound like you never felt 100% better after surgery but only about 50% better.  I can understand why your feeling down and depressed.
 
I am sure you will be hearing from our members that have extensive knowledge of LPR and they will have some good advice for you.  I just wanted you to know I am here to support you and I do remember you well.  I am glad you have come back for help and hope you find answers here in the forum.
 
Kindly,
Kitt

~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

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sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 2/12/2012 2:27 PM (GMT -6)   
Have you tried the Koufman diet? It was developed for LPR. I have had great success nearly eliminating my LPR symptoms. I've got a thread going here if you want more info, read the first post on that thread.

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 2/12/2012 3:14 PM (GMT -6)   
thank you all yes i had a good year post op so i disappeared ive had thorough exams last endoscopy in august..normal..the gi docs do not understand lpr. i was in so much pain it left now its back. no neuropathy but ill check into the diet

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 2/12/2012 3:45 PM (GMT -6)   
i just read the koufman diet. i dont think im willing to do it. sorry. they say i can have lemons and limes but no potatoes. potatoes are bland so i eat them, but citrus fruits are forbidden even from my gi drs. I eat lots of bread, potatoes, etc. because they are bland. i dont get that diet. i appreciate your thoughts nonetheless, i just dont buy into that low carb thing. actually i eat dry cereal rice potatoes etc. no problems..when i slipped the margaritas and chocolate and strawberries in thats what got me. i watch every time i had the probe..i did 3 times. what lowered my ph under 4 were strawberries and jello..yes jello. ice cream, and chocolate were fine, but im steering clear

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 2/12/2012 3:54 PM (GMT -6)   
I don't know what you read, but the Koufman is not a low carb diet. It is a low acid and low fat diet. I eat lots of carbs, they absorb the acid. Potatoes and all root vegetables are allowed even on the two-week induction diet. I eat lots of whole grain products, and brown rice. Lots of veggies, too.  There are people who post on the thread about various diets, so make sure you read the very first post to understand what it is really about

Post Edited (sunbeam48) : 2/12/2012 3:01:00 PM (GMT-7)


dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 2/12/2012 8:37 PM (GMT -6)   
Hi Joe,
I'm very sorry to hear you're struggling with LPR symptoms again.  A few things have come to mind.  First, you need to realize that a Nissen surgery will not stop absolutely all reflux from occuring.  Rather, it is an attempt to bring reflux to a "normal" range.  This can be a big problem for those of us who are very sensitive to reflux, as LPR sufferers are.
 
This is the reason that many GI docs are hesitant to offer the surgical option to those of us with atypical symptoms.  We can have the surgery and continue to suffer from symptoms because there is no way to reduce reflux to zero.  In order to do that, our wraps would have to be so tight that we wouldn't be able to swallow.
 
While typical GERD patients who are referred for surgery generally have extremely high levels of reflux as indicated by very high DeMeester scores, most with LPR have levels that are very close to normal.  (I don't know what your was like, but my highest DeMeester was only borderline.)
 
So that's the conundrum.  The surgery can make us better, but we can still react to whatever reflux slips through during those times when we overdo eating and drinking.  Because of that, we'll be the post-Nissen patients who will need to behave as if we didn't have the surgery--taking the precautions that can help keep acid for causing problems--things like continuing to sleep with the head of our bed elevated, not eating less than 3 hours before bedtime, even continuing to take PPIs.
 
This is definitely something unique to some post-Nissen LPR patients.  Prior to surgery, my lungs were out of control with serious asthma symptoms, and even persistent lung infections.  I was even hospitalized as a result of GERD-induced uncontrollable asthma.  Since my surgery my steroid intake is a mere fraction of what it was before surgery, and my lungs are much, much, much better. 
 
That said, I still get some symptoms at times that are suspiciously LPR-like.  Since I also have severe allergies, it's often hard to differentiate--frustratingly so, in fact.  I don't get the irritated throat issue, but can have postnasal drip and some asthma symptoms that could be either allergy or LPR related.
 
So...I can say with confidence that my condition is much improved, but I still am quite sure I'm getting some silent reflux.  Because of this I have to assume I'm getting reflux, and follow those old suggestions that were offered to us prior to our surgery. 
 
Sure, it would be nice to be like those typical post-Nissen patients who throw away their GERD trappings and live their lives without the problems they faced before surgery.  Life isn't as easy for those of us who are extremely reflux-sensitive. 
 
1. You mentioned you swig Carafate 10 times a day.  As a Carafate fan, I do think it's helpful, but the dosage is only 4 times a day...1 hr before and 2 hrs after eating.  Also two hours before or after meds.  If you're taking Carafate too close to your meds they won't be absorbed properly.  For that reason the PPIs (and other meds) wouldn't be able to work for you.
 
2.  Once your delicate tissues have been irritated.  You mentioned "dietary indiscretions"...once you're burned tissue it takes a very long time to get them feeling better.  You now have a wrap to help the process, but it's obviously not doing the whole job.  You do need to eat carefully, like it or not.
 
3.  I do think you should pursue a second opinion.  You are obviously suffering, and need to get to the bottom of the situation.  Do you live near a large medical center (Johns Hopkins, Cleveland Clinic, Mayo, etc.)?  Generally in places like that there will be surgeons who are used to dealing with difficult cases. 
 
Believe me, I know how hard it is to get satisfaction with the subtleties of LPR.  I have severe allergies, and since LPR and allergy symptoms are very close, I'm always struggling with an allergist who seems quick to assign blame to my history of reflux/LPR symptoms when they're more likely allergic in nature.  That said, I am fully aware of the blurred line, and therefore continue to take a dose of Protonix 40mg before dinner, and sleep with an elevated bed.
 
My allergist sent me to a Nissen surgeon and I had all the testing done only to get the same pronouncement that you did...the wrap is intact and there is no need for a redo.
 
You deserve to feel well.  Sunbeam's suggestion of the Koufman diet might be worth a try.  I don't know much about it, but I do know that some here have been helped while following it. 
 
Do the research and see if you can find someone who can help you.  If you can get referred to an ENT/LPR specialist, and find someone who in knowledgeable and can do some testing to see what's going on.  You may have to travel, but you can't go on the way you are.
 
Wish I could help you more, Joe.  Best of luck finding an answer.
Take care,
Denise

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 2/12/2012 10:37 PM (GMT -6)   
Joe,

Sorry to hear of your troubles.

Did your new set of symptoms come out of the blue one day? Was there any specific trigger to it?

How was your symptoms pre and post op?

I recently had nissen 7 days ago. My throat was very sore for the first several days. I wasn't sure if it was due to the air tube in my mouth during surgery or previous damage from the LPR. My symptoms was a constant burning sensation in my stomach, chest, and throat. I even had some dental erosion from LPR.

Although I'm doing much better since having the surgery from where I was pre op, I hope your symptoms subside. And I hope you are able to do a redo if it is possible to get you back where you was a year ago. I believe the surgeon is key in the success of a Nissen. The other factors are probably how good of a candidate you were and how well you take care of yourself post op.

Good luck Joe.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 2/14/2012 9:17 PM (GMT -6)   
How are you doing today, Joe? :-) Hope you're feeling better!
 

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 2/19/2012 12:57 PM (GMT -6)   
here is what happened.  my throat hurt so bad it was unbearable.  8/31/10 had the surgery.  I weighed 130lbs.  by october 30, 20110 i could eat almost anything, but the wrap caused pain when food got stuck on it.  that was ok.  then my job caused me to work later and i didnt get home timely.  i then ate later at night.  after a few months it was prop pain.  My throat never healed after the surgery and stayed red.  i had 25% of symptoms left.  The gi doc said exactly what u said dencha that is acid is still breaking through and just enough to cause problems.  If i had typical gerd i think i would be fine and would have never had the procedure.  I dont think a redo will help a ton, but what else can i do.  the surgeon said eat drink anything and ill admit i reinroduced chocolate and even some alcohol.  after a few months eating lunch i was hurting badly.  i dont know what to do.  the carafate i dont ingest.   just swig it in my throat to numb it.  the problem is the upper esophogheal spincter is allowing the acid in all us lpr sufferers throats.  what can we do about it.  my demeester was normal but on 2 a day ppis.  i did it on ppis  i cant believe i have an incurable disease  i really hoped the surgery would allow the sore throat and redness to heal  if i didnt have the pain id be fine.  i think there is nothing to do.  i need something to allow the throat to heal..it hurts so bad.  dencha did you have a sore red throat.  anyone have their lpr throat heal after nissen.  i waited too long before i got diagnosed.  had the first dr. not dismissed me i think i could have got treatment before so much damage was done and id had have a better outcome.  he ignored me and the whole time more damage was being done
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