LPR - Burning throat, mouth, tongue, dental problems....cancer?

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maximus808
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Date Joined Sep 2011
Total Posts : 620
   Posted 3/1/2012 4:50 AM (GMT -6)   
Ok, guys.....I'm getting really paranoid now. I know many of you heard my story many times already but I don't know where else to turn....

Before LPR (I'm calling this because I have no other name for it), I do recall have some early signs of dental erosion maybe 10 years ago when this started but I had no LPR or GERD symptoms. My dentist actually pointed it out and I thought nothing of it.

Fast forward 9 years, LPR symtoms began with chest tighting, to throat tightning, to a burning chest, then throat, then mouth/tongue regardless of what I ate. I could actually see redness in my throat and on the edges of my tongue. My lips would also get sensitive even a little chapped sometimes. I could not figure out what was going on. Finally I decided to go with Nissen Fundoplication as the last resort to see if it would help. Three weeks later my throat and mouth still hurts and the redness is still there. I'm debating if I should make an appointment with my ENT to evaluate it. I seen him numerous times before and he said it was red but nothing to worry about.....for someone reason I don't think they take it seriously.

Do you think 3 weeks is early still to see signs of improvement. I've heard of maybe two people on these forums who had similar symptoms and are still struggling despite Nissen. Are there any success stories out there?

I'm getting worried it might even lead to cancer one day..... :(

Thanks.

Silas1066
Regular Member


Date Joined Feb 2012
Total Posts : 36
   Posted 3/1/2012 9:51 AM (GMT -6)   
I haven't had the surgery, but I have had other surgeries, and it usually takes months to completely recover.

I would give it another week at least, and then if it doesn't clear up, go see an ENT. Your issues may not be entirely GERD/LPR: you may have sinus and allergy problems aggravating your throat and mouth. I breathe through my mouth all night because of bad allergies and sinuses, and I have had bouts of dry mouth and throat to the point of burning: it didn't have anything to do with reflux.

An ENT will be able to see if there is swelling and irritation in the mucosa of the sinuses, and if PND, etc. are playing a roll here.

I know cancer is a worry, but remember that millions of people suffer from GERD/LPR. It doesn't make it any easier to deal with, but remember it is a common condition.

I have an endoscopy scheduled for the 20th, and I am more worried about being diagnosed with barrette's or bad LPR. I do not want to have to radically change my entire life because of a chronic health condition.

JAM1986
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Date Joined Feb 2012
Total Posts : 46
   Posted 3/1/2012 1:57 PM (GMT -6)   
Silas,

I think Maximus and I can tell the difference between allergies and LPR. There is a big difference between the two. Maximus are you taking any PPI's. I think it may alleviate some of your symptoms. I'm having a burning mouth also and it is freaking me out. My surgeon prescribed me PPI's on a temporary basis and I find some relief.

stkitt
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Date Joined Apr 2007
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   Posted 3/1/2012 4:51 PM (GMT -6)   
I do believe Silas was just trying to help so please remember here in HealingWell we respect each other. 
 
Thank you for your understanding.
 
Kitt 
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"The road of life twists and turns and no two directions are ever the same. Yet our lessons come from the journey, not the destination."

Silas1066
Regular Member


Date Joined Feb 2012
Total Posts : 36
   Posted 3/1/2012 5:31 PM (GMT -6)   
JAM

You have no idea what allergies can do, believe me. My allergies and sinus problems are so bad, that in 2009, I was having migrane headaches, dizziness, sore throat, and vocal problems 24 hours a day for 6 months. My sinus passages were swollen and my eyes bloodshot around the clock.

I thought for sure I had a severe sinus infection, so I went in for a CT Scan: turns out it was "only" allergies.

Allergies are an immunological issue, and can be debilitating.

maximus808
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/1/2012 6:52 PM (GMT -6)   
Thanks for the response guys.

The thing is, PPIs never really worked for me. Maybe very little in the beginning when this all started. But I'd say it had little effect.

Honestly, the pains I feel is not unbearable but I just don't want it to worsen and damage what's already damaged.

Like a wound.....I want to heal but if it keeps burning how does it heal?

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 6873
   Posted 3/1/2012 7:07 PM (GMT -6)   

Hi JAM,

Actually allergies and LPR have many, many similar issues.  In fact it's very difficult to differentiate the cause of many LPR type symptom.  It's muddy water, indeed.  That's the struggle I have, because I have severe allergies, and many of my symptoms mimic LPR, so my allergist is always searching for the cause, and never rules out reflux. 

 
Of course burned tissue and tooth erosion aren't the symptoms that are difficult to differentiate.
 
 
Other symptoms such as sinus issues, PND, lung problems/asthma, cough, hoarseness, etc...can be caused by allergy or LPR/reflux.
 
Max,
You know what I'm going to say before I say it...wait, wait, wait.  It is FAR too early to decide whether or not your symptoms are residual problems that haven't had time to heal yet.  Plus, as you know, reflux is still a possibility at your stage of recovery.
 
Hang in there!
Denise


maximus808
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Date Joined Sep 2011
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   Posted 3/1/2012 9:29 PM (GMT -6)   
thanks denise.

It's so funny how your mind can play tricks on you.

The first week i was so happy cause i thought it was a success.

Weeks 2 and beyond my happiness went down as I started doubting the surgery.....only time will tell I suppose......

Truthfully, the pain isn't unbearable. I'm more worried of what's to come if it doesn't stop.......

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 6873
   Posted 3/1/2012 10:18 PM (GMT -6)   
Hi Max,
Take control of the direction your mind takes.  You can do it.  When it starts taking you in the wrong direction, steer it back into the positive realm.  Spending your days worrying about "what if" is doing nothing to speed up your healing.  All this worry just makes your recovery more difficult.
 
Surrender to the process of healing, and let you body do its work.  Help it along by being careful with what you eat and how you move.  I know it's hard to wait for this healing to occur, but don't really have a choice.  Healing will happen when its good and ready.
 
Just go along for the ride, and make the best of a tough recovery.  We all had to go through it.  Just put one foot in front of the other, and take it one day at a time.
 
You can do this!
Denise

JAM1986
Regular Member


Date Joined Feb 2012
Total Posts : 46
   Posted 3/1/2012 11:07 PM (GMT -6)   
Sorry Silas. I did not mean to be disrespectful. Silas, I also suffer from serious allergy issues ever since childhood. What I thought was a sinus infection at one point in my life turned out to be rhinitis. I have had sore throat, phlegm, runny nose, and red eyes from all the allergens.

maximus808
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/2/2012 2:45 PM (GMT -6)   
jam,

What are your symptoms now?

How many days post op are you?

Thanks.

JAM1986
Regular Member


Date Joined Feb 2012
Total Posts : 46
   Posted 3/2/2012 6:57 PM (GMT -6)   
Maximus,

I'm 31 days post op with the same symptoms of a burning mouth. The PPIs I take gives me some relief. If I don't take PPIs the burning is a bit more intense. How about you?

maximus808
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/2/2012 10:30 PM (GMT -6)   
My symptoms pre op were a burning/uncomfortable feeling in my stomach (main problem), then a burn in my throat, tongue, and mouth. It wasn't extremely painful but it was there.

After surgery, the stomach pains and discomfort went way down. The throat, mouth, tongue is sore but its not unbearable sore. I just hope it doesn't get worse honestly. If live with this pain if I knew it wouldn't cause anymore damage.

But I'm still hopeful. I do feel it less today for some reason.....I'm keeping my fingers crossed.

JAM1986
Regular Member


Date Joined Feb 2012
Total Posts : 46
   Posted 3/3/2012 12:52 AM (GMT -6)   
Maximus,

You are not alone my friend. I have to wonder if all this burn is killing my taste buds. I used to enjoy good food like a glass of red wine and a rib eye steak. I have to wonder.

maximus808
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/3/2012 1:14 AM (GMT -6)   
Hey JAM,

I know my taste buds are still in tact thankfully. We're not even a month out yet but I know the feeling of doubt we are going through. Did you feel any change at all since surgery?

Although I feel the pains in my mouth....it's a different feeling than before which makes me somewhat hopeful.......

JAM1986
Regular Member


Date Joined Feb 2012
Total Posts : 46
   Posted 3/3/2012 2:37 PM (GMT -6)   
Maximus,

Before the surgery my symptoms were much worse. When I would lay down to go to sleep a pool of acid would collect in my throat and burn it real good, even with medication. Because the entire folded part of the nissen was above my diaphragm, I had really bad chest pain. Because of this my esophagus was not straight so liquids would get trapped in my esophagus. I could not lay down even with medication. My mouth was intense with pain from the acid burn. After surgery I can lay down with medication and the acid burn is less intense than before but still a concern. When on medication the pain is less severe but I still get halitosis from the acid, ulcers under the tongue, sour taste, burning, and a white coated tongue.

maximus808
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/3/2012 3:52 PM (GMT -6)   
What does the ulcers look like? Are your lips affected as well? Do you get any dental problems? Is your tongue only white? Is it red also?

maximus808
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/3/2012 4:04 PM (GMT -6)   
Also Jam, when do get your symptoms? Is it all day, at night, when lying down? Who recommended the nissen to you? Gosh I feel like we are in the same boat almost.

maximus808
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/3/2012 4:24 PM (GMT -6)   
Also did you have any follow up with your doctor? What did they say about your symptoms?

JAM1986
Regular Member


Date Joined Feb 2012
Total Posts : 46
   Posted 3/3/2012 6:46 PM (GMT -6)   
My ulcers look like white and oval or circles and my teeth are sensitive like it is slowly eroding. All day I have a slight burn but when the PPI starts to wear off at night it starts to burn even more. I don't think my tongue is red but it is irritated. The reason I had a revision of the nissen is because my first nissen went through my diaphragm and disrupted the first nissen. On follow up the nurse I spoke to said it takes about two months before the stomach and esophagus heals to the point they can evaluate. She said during that time the esophagus which went through trauma secrete fluids that burn but also said that acid can still leak out during the healing process.

maximus808
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/3/2012 7:22 PM (GMT -6)   
JAM,

So you think it will take two months to notice some difference?

It just feels that the mouth is going in the opposite direction instead of healing?

I don't want to over think this but sometimes I think how can it heal if I still feel the burn an if my tongue parts of my mouth is still red or getting redder....

maximus808
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/4/2012 1:44 AM (GMT -6)   
JAM,

What's your story like? Did a GI recommend Nissen for your issues? Did you see an ENT? What did they say. I'm interested to know since we seem to be dealing with similar issues. Thanks.

Max

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 3/4/2012 12:42 PM (GMT -6)   

maximus,

 

i had the same symptoms and had nissen 2010.  it took 6 to 8 weeks and i got better, but my throat never healed and the throat clearing and pain were still there.  the nissen for me helped 50%.  then i started eating more fat and chocolate.  had a job which had me eating later.  now i eat bread soup such a bland diet.  I hear you give it 2 months.  i had post op 24 hour probe..have had 2.  Not to scare you but i have had 2 scopes since my surgery and they say i have bile reflux.  the gi doc believes the nissen caused the  bile reflux.  24 hr impedance shows over 50 episodes of non acid reflux.  i would say start the ppis if you stopped, get a 24 hour probe.  its early so things still may calm down.  if not get those tests.  I am considering a redo but the dr. says my reflux is normal..which it is for standard gerd and not lpr.  I had people question whether it were allergy related too and it isnt.  seen 3 ents all cleared up the allergy question.  it sounds to me like lpr..but im no dr. and am on here for help too.


maximus808
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/4/2012 3:56 PM (GMT -6)   
Hi Joe, what were your symptoms pre and post op?

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 3/4/2012 5:05 PM (GMT -6)   
preop  sour taste in mouth in middle of night if i ate past 6, throat clearing-significant and a very sore throat, and a feeling that something was caught in back of my throat..mucuous..that was bad.  post op everything remained, but 8 weeks post op my throat hurt at times, but not always then the mucous thing completely disappeared.  some throat clearing after meals stayed too  overall i got some relief then last april the sour taste returned the constant mucous is back last month or two and my throat has hurt bad for a month.  if i could just manage getting rid of the pain.  I can take my tongue and the back of my throat on the left side feels like there is a big lesion.  i can actually feel it and its thicker than the left side of my throat.  my throat has been red in the same area for 4 years about, but the right side has a deeper burn.  the problem is a dr. gave me a drug called sodium oxybate in 2008 which caused gatsritis and a burned larynx.  it never healed and has only gotten worse and i cannot suppress the reflux enough for it to heal.  and now i have bile reflux after the surgery and i dont know what to do.  if i stop the ppis there will be acid.  but even controlling the acid does not help as im fefluxing over 50 times non acid stuff.  the pain is unbearable
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