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Does surgery work for Laryngopharyngeal Reflux (LPR)?
Since December 13, 2016. My symptoms started with a soar throat, soar inflamed taste buds on the tip of my tongue and inflamed salivary glands on my soft palate. My tongue, throat and soft palate had a painful burning sensation that was on and off. My General practitioner referred me to an Ear Nose throat specialist who referred me to an oral surgeon who referred me to an oral pathologist for burning mouth syndrome. After wasting 3 months of running around with these Dr's and being tested for oral thrush, hsv tests, vitamin deficiency tests, auto immune deficiency tests, cultural bacteria tests all which came back normal. I decided to go for a second opinion with another E.N.T. specialist who performed a camera scope and diagnosed me with acid in my throat. I was put on Dexilant and noticed the pain dissipate almost immediately only problem was I couldn't tolerate the medication. I was then put on Tecta and referred to a G. I. My general Practitioner did some blood work for h pylori and I tested positive. I started to develop tinitus in my left ear. I had a gastroscopy where they found a 2 cm Hiatel Hernial and my lower sphincter was weak. Thats when I was told I have a mild case of gerd, but I don't suffer from any heart burn. I was put on triple dose of antibiotics for h pylori and continued with the Tecta, domperadone and sucrolafate. I'm getting a little relief from the PPI and meds but I still suffer from bitter reflux taste and burning pain in my throat, soft Palate, the tip of my tongue and dry mouth that comes and goes. I'm in the process of having a 24 hr ph level test done. The G. I. I was seeing says my esophagus biopsy tested clean and he doesn't believe what is happening in my oral cavity is related to my gut. He stated in order for acid to travel to the throat it has to travel through the esophagus and the esophagus tested clean. Thus he can't help me anymore. I'm so confused my ENT says I have acid in my throat and the G.I. doesn't agree.
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If you haven’t already, please read The Chronic Cough Enigma. My symptom (sore throat) is pretty constant although maybe a tiny bit worse while lying down.
You could get the TNE test where an ENT specialist runs a tube up your nose and down your throat and takes pictures. It sounds awful but really isn’t.
You could also get a Bravo meter implanted via endoscopy. This measures the PH in your GI tract and would determine if you have too much acid or not enough. I just had this done but do not have results yet. Will update when I do.
Best wishes, Cindy
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2 ReactionsThankyou for your kind input. I did not mean to imply that it went away during the day, it just seems to be noticeably worse in the morning and in the late afternoon and early eve. When I saw ENT he literally said this is not an ENT issue, you need to go back to GI. and he did nothing. The GI Doc said " I am ordering two tests, and if they don't show anything, then I can order a third test which is very painful, and you cannot be sedated for it, so think about it." He made me feel like I might be exagerating, and warnining me of "Punishment". Next time I saw the PA and she switched my Prilosec to Prevacid as if that might make it better. It did not. I see her again next week. All I can say is that she is much kinder than the GI Doc. But I think I need to shop around.
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1 ReactionIf you do have LPR it is an ENT issue. While waiting to find a responsive doctor, you can read the web site of ENT Dr. Jamie Koufman on LPR and acid reflux. She has good explanations and actionable advice. She had a video this past Wednesday on her FB page in which she said that LPR is a lifestyle condition, and you need to make lifestyle changes to address it. She gave a multi-step detox program in that feed. So look her up on the web and FB and see if what she says makes sense for you. You can also join the acid watchers warriors FB group; they have a ton of low-acid recipes. you can also look up the advice of Dr. Aviv, who also wrote a book on LPR, as did Koufman. Good luck!
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1 ReactionLPR and acid reflux can only be partially diagnosed by an ENT, but the gastroenterologist is the doctor who deals with these issues. I think the fact that the GI suggested doing 2 tests first that are easier shows he's intelligent and trying to make things easier for you. You need someone professional and the bedside manner is secondary.
Thankyou all so much. I did go to a YouTube channel and listen to her talk. I may order her book. Interesting that I should learn more here than at the Physicians office.What is the acid watchers FB group?
I have been learning a lot more from online discussion boards and FB pages than in doctor offices! Here is the link to the acid watchers warriors group. They follow Dr. Aviv, who also offers a low acid diet (Koufman says hers came out first). I bought Aviv's books before I read the Koufman and acid watchers FB pages; I think I could have got by without the book just by reading the free stuff online. Here is the link, which offers great recipes in its files, so you can do the low-acid, low-fat diet without spending months eating just cantaloupe: https://www.facebook.com/groups/199013402360712
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2 ReactionsI totally agree with you! Thank you for sharing this info!
I have completed the four day Bravo meter test. An acid monitoring capsule is planted on the wall of the esophagus via endoscopy. Patient keeps a device within close range and presses appropriate button when feeling a symptom of reflux and also when sleeping and eating. My only symptom (sore throat) is constant so I wasn’t pressing button in the manner some people might. Still the capsule did it’s job.
I had my follow up consult with my GI doctor and she was able to show me on a graph the times and duration that I was (unknowingly) experiencing reflux. My PH level is 5-6, so slightly acidic but enough to do damage. She is prescribing famotidine twice a day, which I will do. I also plan to continue my homeopathic methods for esophageal healing referenced in my above thread. My doctor also said I need to sleep at a 45 degree incline! Purchased a wedge pillow and we’ll see if I can learn to be a back sleeper-challenging.
My out of pocket for this test was $350 with Medicare Advantage plan. I hope this is helpful. Cindy
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1 ReactionI just found this forum. So much useful info for LPR. I was just told yesterday at Mayo in Jacksonville that I have LPR after a 3 year 9 month journey with so many drs and tests by local drs in Brevard County. I had the esophagram done yesterday and they did the camera scope down my nose and throat. Going on some meds but I’m reading that it’s not good to take the H2 blockers & PPIs longterm😲🤦♀️ so not sure how to proceed with that issue. Just trying to get all my symptoms under control for now. I’m always choking on thick mucus and also have developed a bad pain in my ear and it feels/sounds like I’m on an airplane in that same ear. I’m getting really bad headaches too that lasts for days. I haven’t read anyone else’s posts having those symptoms but the all started together. Mucus/choking first in Jan 2020 then bad headaches started in March 2020 then the ear issues about a year and a half ago. Before Jam 2020” never had any of these problems. Really hoping and praying for a long term solution since it can possibly lead cancer if left untreated for a long time. A sinus ENT at Mayo told me it’s LPR so now I’m hoping to get a good Gastro Dr to treat it.
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2 ReactionsGet breath test for SIBO…I was told I had LPR, ended up having SIBO…..it is a simple breath test to make sure what you have. Treatments are quite different however.