Been to 5 ENT's for LPR, am I starting to go crazy?

Hi guys.

This one is a bit of a read, but if you are able to take the time to read my story I would be truly greatful.

Short background: I've been having acid reflux since I was a little kid, and for the past six years I've successfully been keeping it under control with tums and PPI's. I've done all the testing to confirm the reflux, and when they scoped me they found a large hiatal hernia and mild esophagitis. I did a manometry and I had a good motility but my les was relaxing. My DeMester score is around 50. I've never had any LPR symptoms before, purely hearthburn.

Problem: This summer i got IBS related symptoms. Me and my doctor suspected the PPI's could have something to do with it, so I completely revamped my diet and quit the PPI's completely. Everything went fairly well as far as the hearthburn, but I started having troublesome symptoms I never experienced before, for instance trouble breathing. One day when I was out with a friend my voice just gave in and I got really hoarse. We were at a party so I kept pushing it and I was hoarse for about 3 days.That evening I went back on 40mg omeprazole. Every since that day 6 months ago I've been having trouble with my voice and throat. I've been having a very sore throat on the right side, and my voice will be raspy and hoarse and it feels like theres alot of mucus on the vocal chords. NOTHING I do seems to make this problem go away, and I've been on 40mg Omeprazole twice daily, and carafate + Gaviscon before bed for about 3 months without any improvement. Even though I have no hearthburn, I still feel stomach content coming up in my chest all the time, and i burp probably 50+ times a day.

I've been to 5 different ENT's. 2 of them didn't have a clue, 1 said I had vocal chord nodules and the last two said my vocal chords closed good but were a little swollen. They all say my current problems aren't acid related, because I have no "acid polyps" on the vocal chords. One of them had a theory that the event 6 months ago where I lost my voice has caused me to "speak in a wrong way". I guess that's possible but I've been to a speech therapist 6 times and I still see no difference.

I do however suspect that my voice problems are related to reflux. I've read about non-acidic reflux, and the theory is that since your LES isn't workin properly, it doesn't matter how much you reduce your acid, because other harmful stomach content will still reflux and irritate the vocal chords. The main reason I suspect this is that 2-3 month ago my voice actually started to get better to a point where my only problem was mucus. I got more relaxed with my diet, and right before I went to bed I ate two bowls of buttersoaked popcorn (boy do I regret that), without taking gaviscon or bothering to raise the bed. When I woke up the next dat I had a terrible sore throat and my voice got progressively worse during the day. Since that I have not been able to recover, and I've tried different reflux diets. I do however notice that my voice and sore throat seem to be better if I eat less, and get worse after I've eaten.

The Doctor's all say it's not acid related, since I don't have vocal chord polyps. They have not heard about non acidic reflux, but some of them say it's possible reflux is a factor. But if it were, wouldn't they be able to detect it when they're looking down my throat? Nobody seems to believe me, and I feel like I'm being questioned by all the "professionals" I speak to. I'm so confused and need advice. These voice problems are making me so depressed, and I'm getting more and more isolated. I've been leaning toward the Nissen for a long time, and I'm speaking with my surgeon in a week but I have read the Nissen is not effective for atypical symptoms. Is there anyone out there that have experienced this problem? Most people I read about that have LPR doesn't seem to have any hearthburn issues and vice versa.

Thank you for taking the time.

Jakob.

Hi Gewarn,

You have all the classic symptoms of LPR - my first symptoms were burning mouth, felt like I was being strangled, lump in throat - I went to 3 ENT consultants all scopes were clear and they all said I was fine. I had crushing chest pain and food finally started to slow down, a peptest showed pepsin was off the charts - pepsin does not cause red vocal chords acid does. By the time I was finally diagnosed with a small hernia weak LES i had developed upper and lower dysphagia.

May I suggest you try a peptest and there is also the reza band that has now come out.

I would think you're not going to see much progress until you get your hernia and les repaired.

All the best

Pink

GC1pink: Thanks for the advice. I live in Europe and I tried to email the Reza company about where I can get it here, but i have not got an answer. Do you know anything about this? Yes maybe I should order a peptest too.

CAGU: Yes I am, I asked to get tested for it before the surgery, and did 2 weeks ago. I hope the surgeon will bring me the results on our next appointment

GC1pink: Thank you for the advices. I've followed them and I ordered a peptest today. I've tried to call the company that make the Reza band, but they don't pick up. I will continue to try. I have two more questions if that is okay?

1. Do you think the Reza band will work even though I belch 50+ times per day? I'm thinking it might push the band appart allowing pepsin to come up?

2. Why do you suppose I can't recover from when I lost my voice 6 months ago? I have had servere hearthburn issues all my life, but never LPR problems until that moment. Is it possible my throat could handle it before, but stopping PPIs damaged the throat tissue and now the pepsin irritates it preventing it from healing? I know it's hard to answer, but honestly I have more faith in someone like you with experience than all the worthless doctors I've seen.

Thank you for taking the time.

Jakob.

if got ibs symptomps and burp alot you got a gut problem.

try the SCD Diet should fix that.. just dont eat anything acidic.

i took xifaxan to clear my IBS issues.... but you really need a good diet afterwards..

the dr below wrote a good book you should read it.


http://www.npr.org/blogs/health/2011/01/10/132702599/antibiotic-shows-promise-as-treatment-for-irritable-bowel-syndrome

GC1pink: Thought you'd like to know that my pepsin test results are back. Morning result showed no pepsin. I guess that' s because I stop eating several hours before bed and shug copious amounts of gaviscon liquid right before I lay down (Afterwards I found out you shouldn't drink that 36 hours before the test)

However the tests after my two meals were both very highly positive for pepsin. The first one was >500ng/ml which is the highest possible amount on their scale. The second one was 335ng/ml, still very high.

I've finally decided to go through with the Nissen on January 7th. I'm meeting with the surgeon on monday to discuss the surgery.

GC1pink said...
Hi Jakob,

I don't think the Reza Band is an absolute cure all - I do however think it's useful for night reflux and after eating reflux.

You are bound to get gas reflux as well as liquid reflux into the UES and this is what causes the damage.

Definitely coming off ppi's you would now have acid damage in your throat as well as pepsin damage.

I believe the Nissen would be of benefit as anything that reduces reflux can only be a help.

Also your oesophagus is built to withstand a substantial amount of damage but the tissues in your throat are not. Pepsin clings to the cells in your throat and stays there, this is then repeated day in day out. It's almost impsossible to heal a throat that is still being battered with stomach contents - I should know.

My advice to you would be get the surgery - let your throat recover and enjoy getting on with your life.

Do let us know how you get on

Pink

Pink, about the gas reflux. Some people said LINX helped them fix their symptoms. Think it would work for me?