Losing my voice: 12 years of LPR/LSN, PPI's and surgery

I could really use some help/advice, my throat is burning so much I can barely speak, I'm seriously considering learning sign language after spending most of last week writing notes to people instead of talking.

This is my first post, I'll try and keep it brief.

35, male, Australia. My primary symptom is a burning at the back of the mouth on the soft palate just above the uvula, gets worse with speech. I'm told this is due to LPR/GERD even though I don't get heartburn or other symptoms apart from some bloating, I can believe this though as usually it's the most sore upon waking.

I've tried all the standard treatments including the following:

- Elevating bed, avoiding trigger foods, not eating 5hrs before bed, losing weight (I'm already skinny). Do these work for anyone??
- 12 years of different PPI's at max dose (still on them) + Gaviscon.
- Nissen Fundoplication operation 5 years ago, no change at all to the burning but apparently it was 'successful' according to the Gastro, see the before and after 24 hr ph test here: https://i.imgur.com/8zABmG4.jpg
- Operation: removed tonsils and coblated/ burned off the affected area (in the hope it would grow back normally like in burning tongue syndrome: it didn't).
- Numerous endoscopies, all normal, I do have vocal cord paresis recently fixed with a juvederm/hyaluronic acid injection. Vocal cords still very mucousy (sign of Reflux).
- 8 years of constant diets: Alkaline, vegetarian, gluten-free, very low carb, paleo/GAPS etc.
- about 1/2 the supplements at iherb.
- Nerve drugs for LSN (Laryngeal Sensory Neuropathy): Amitriptyline (Elavil), Gabapentin, Lyrica, Nortriptyline. Amitriptyline did seem to help a bit but gave me weird mood changes and Tinnitus.
- Thoroughly investigated the 'GERD is caused by not enough stomach acid' theory. I do seem to fit this profile but the treatments don't work, taking HCL/digestive enzymes/bitters capsules just burns my throat.

I've been to 5 different ENTs, numerous speech therapists and spent a fortune on alternate practitioners, nothing has helped. I feel quite desperate. Cross-posting here and on another forum, hope this is okay.

dencha said...
Hi Taois1,

Welcome to the forum! I'm sorry to say that I have no clue what's going on with you. You are a mystery. I looked at your DeMeester testing, and there's no doubt that your surgery was a success.

The tiny amount of reflux you're getting now shouldn't be causing such severe problems. Still, I wonder that if you were extremely sensitive, even the infrequent episodes could cause the problem. Unfortunately, they can't make the wrap tight enough to stop every bit of reflux, or you wouldn't be able to get food through. I know there are people with highly sensitive esophageal tissue, so I wonder if that could be the issue. I have no idea really, but it's a thought.

I hope somebody comes by soon to offer you more information than I can. Good luck with it all. It sounds like you're doing everything you can. I wish you could get some relief!

Best wishes,
Denise

Hi Denise, thanks a lot for what you said, that's very kind of you (very different to the response in the other forum!).

The latest ENT (who ordered the second pH test) said that ENTs and Gastros have different criteria for measuring if there is Laryngeal Reflux, so according to the Gastro I would not have it but according to the ENT I would (very confusing!). E.g. The Gastro would have the cut off point as pH 4 (below this would be reflux and above would not be), while the ENT would have it as pH 5 (hence getting a lot more hits). I'm not sure how this applies to the DeMeester score though.

He and another ENT also said I would have nerve damage after reflux for so long. I'm not sure if you or other members here are familiar with it (most doctors aren't because it's fairly new) but it's called Laryngeal Sensory Neuropathy, or Postviral Vagal Neuropathy, or simply Vagal Neuropathy. Here's an artile that explains it fairly well (just replace the cough with burning in my case): http://www.fauquierent.net/cough.htm It's basically a hypersensitivity of the nerve so that even small amounts of Reflux cause big problems (exactly what you were describing). I actually read about it first on this forum here last year, I think. In any case the treatment for it (nerve drugs like Amitriptyline) hasn't worked for me.

Thanks again for your reply :)

I checked standard pH test's. Good pH for stomach it's 1-2,5.