LPR that doesn't respond to high dose PPI? What else could it be?

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BrokenThroat
New Member


Date Joined Aug 2013
Total Posts : 14
   Posted 9/10/2013 8:22 PM (GMT -6)   
I've posted here before about my issue but now have a little more information that I'm hoping somebody can offer some insight...

Quick recap:
For a little under 2 years I've had a feeling of tightness in my throat and fullness in my ear. This is only on the right side. It seems to have gotten progressively worse to the point where now I almost always feel like there is something in my throat, I can't breathe right, etc. This seems to get especially worse after eating. Some things make it worse than others but it is usually there almost all the time to some degree.

about 4 years ago I had an abscess on my tonsils (TPA), also on the right side. I ended up having to go to the hospital to have this drained. I seemed to have recovered from this fine and didn't have any problems for 2 years.

Over the last year the only thing that was found that might be causing the issue was I still had a somewhat enlarged lymph node in my neck/lower jaw on the right side that may have just stayed that way after the tonsil issue. I ended up having that node removed and the biopsy came back totally negative.

Despite having gone to multiple ENT doctors before none of them seemed to think there was anything going on. Now, most recently I have gone to a new doctor who immediately upon doing the fiber optic scope said my throat was inflamed and had ulcers on my vocal cords from clearing my throat. He said it was classic signs of LPR and couldn't believe nobody else had seen it.

To treat this he put me on Nexium 40mg twice a day. I have been taking this for about a month but have not noticed any significant improvement as I still have the throat tightness, ear fullness, and throat clearing. I went back to the ENT recently and he did the fiber optic scope again and said that my throat looks the same and that he expected it would be much better by now. He also said that my symptoms should have been fixed almost immediately on such a high dose of Nexium. At this point he isn't sure what to do next which seems to be my usual story from the past 2 years... keep going to doctors who end up not knowing what's going on with me. At least this most recent one has found actual evidence that something is wrong.

Could this be some sort of allergy or other issue or is it LPR that can't be fixed with Nexium?

Other tests I've had in the past year to try and figure this out:
- CT scan sinuses - Okay
- (two) MRI with/without contrast neck/head - Okay
- (two) Stress/Echo tests - Okay
- Multiple chest x-rays - Okay
- Multiple EKGs - Okay
- Pulmonologist full breathing/asthma tests - Okay
- (two) Allergy tests skin prick - Nothing significant, some allergy to dust mites and mold
- Allergy test injection - Nothing significant, some allergy to dust mites and mold
- Food allergy test with food stuck to arm for 48 hours - Completely negative
- EGD - Discovered Eosinophil Esophagitis, but I don't have any problems swallowing or food coming back up so may just be incidental finding
- CBC, Metabolic, TSH, Mono spot, and H Pylori spot bloodwork - All normal

Medicines tried:
- Flonase, Nasonex, pretty much every type of nose spray
- Prilosec, Nexium
- Singulair
- Swallowed Flovent
- Zyrtec/Zyrtec D
- Muscinex

Any suggestions are greatly appreciated as I'm not sure where to go next. Thank you.

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 9/10/2013 10:56 PM (GMT -6)   
For lpr it can take months to find benefits from twice daily ppi's.

I'm in the same boat however, I have been on twice daily ppi's for about 6 months now and the redness in my voice has gone down some, but I have a nodule on my vocal cord thats starting to get larger... Was basically non existent before.

However, my thought is that my problem is from non acid lpr or laryngeal sensory neuropathy. If it is LSN getting put on some kind of nerve medication could help. If it's related to non acid reflux, well then obviously medications to reduce acid reflux wont help all that much. I'm currently looking into getting the full 360 nissen wrap to reduce as much as I can coming up.
-TheSickness-

33333
Regular Member


Date Joined Jun 2012
Total Posts : 94
   Posted 9/11/2013 1:45 AM (GMT -6)   
BrokenThroat,

Have you had an impedance test for non acid reflux?

BrokenThroat
New Member


Date Joined Aug 2013
Total Posts : 14
   Posted 9/11/2013 5:03 AM (GMT -6)   
I haven't had the impedance test. My GI doctor wanted me to have the Bravo capsule test, but after reading around I didn't think that was going to really provide any insight. At the same time my ENT said that he didn't think that was necessary because he could obviously see my throat was inflamed so he suggested trying the high dose PPI for 3 months since that would be the same thing the GI doctor would do if the Bravo test was positive. It's only been about 1 month on the PPIs but my ENT doctor said he expected at least some improvement by now.

I've asked about the dual impedance test before and it seems like all my doctors say it is not available anywhere near me? They act like most places don't offer that test anymore and that the Bravo is the thing most places do now, although from reading on here and other places it sounds like the Bravo really isn't the test for LPR.

It just seems like my symptoms are so fast after eating and vary depending on the food... makes me always wonder if there is some sort of underlying allergy. The strange thing is that it is ONLY ever on the right side. Like even right now I just woke up for the day and haven't eaten anything but I feel like my throat is swollen/tight just on the right side right above my adam's apple. I always wonder if there is something else going on like something with my tonsils or dental related, muscles, etc.

sk55
Regular Member


Date Joined Jun 2011
Total Posts : 225
   Posted 9/11/2013 6:14 PM (GMT -6)   
 
 
the reason your not feeling better is you also have to control your diet when you have LPR..
 
google the koufman diet.  high PH Diet anything acidic like a diet coke will make it worse.
 
thats also a simple test if try to drink something acidic like a diet coke does it get worse, if so its probably LPR...
 
diet is a trial and error thing with lpr.
 
try the following
 
high PH
low carb
fodmap
 
personally high PH and paleo work for me.
 
its takes a while to figure out the right diet... months to years..
 
you know your on the right track when your throat gets better month to month..
 
the 2 test you should do:
 
are manometry,
dual probe ph test (like the restech)
 
 
good luck.
 
 

StephanieJean
Veteran Member


Date Joined Jun 2013
Total Posts : 500
   Posted 9/12/2013 8:47 AM (GMT -6)   
I had LPR that was caused by both acid and non acid reflux.
The impedence test was great for letting my doctors know why the PPIs were not working at all for me.

I had a nissen and my throat has never felt so good and another neat side effect now is that I can breathe easier. I would do it all over again in a heart beat.
I highly suggest the 24 hour dual probe PH test with impedence study. It will help clear things up for you about what is going on.

Terlin
Regular Member


Date Joined Mar 2013
Total Posts : 91
   Posted 9/12/2013 8:13 PM (GMT -6)   
Hi any advice on what I should ask on my ent appointment. This is my second, first just blew me off. Symptoms burning throat with vapors pushing up into my throat sinuses and ears, sever bloating and difficulty breating, constant belching , lot of mucas tighness in neck and base of scull ear presure and sinus presure hoarse throat. Dx stage 3 gerd Barrett's and medium hiatus thanks Terlin
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