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2 years of voice problems with no answers, LPR / silent reflux? Please help

Posted , 6 users are following.

robodelfy
robodelfy

Hi

2 years ago I started getting a lot of pain when talking or singing. This was after years of a globus sensation that came and went but didnt affect my voice.  This all quickly got worse to the point where I could barely speak, and the tension and pain was unbearable if I used my voice and afterwards. 

I saw every doctors, specialist, 4 endoscopies with strobes,tonsillectomy, speech therapists, laryngeal manipulation, peptests, reflux diets, exercise, meditation etc. Nothing really changed! 

It's been two years now, and my life is a shadow of what it used to be, and I spend all my time alone and have become very depressed and lonely. I used to be sociable and run groups and workshops and sing. So I'm unable to do what I love.

I have been told by all the doctors and ENT's I've seen that it doesnt look like reflux, and my vocal cords and throat look fine. I do have some red/orange spots on the throat which apparently are nothing to worry about. Recently I have noticed some small white lumps where my tonsils used to be, which apparently are just cystic lymphoid tissue or blocked saliva glands, and nothing to worry about....as always! 

But having before accepted that my problems were a mixture of psychosomatic and possibly just bad subtle habits from years of anxiety, I am now worried about possible medical causes, such as LPR/silent reflux. I feel like I'm going around in circles. 

Do other's with LPR/silent reflux only experience pain and burning from voice use, but nothing else? I can't find anyone else who is the same in this way. Please let me know?

I would like to get more conclusive tests for silent reflux, but as my endoscopies dont show problems, its hard to get referred.  Mostly the doctors dont seem to know or care much whats going on.

Any help or similar experiences shared woudl be appreciated

I feel for anyone going through something similar, its debilitating

Thanks

0 likes, 12 replies

12 Replies

  • robtheprint
    robtheprint robodelfy

    Posted

    Hi robodelfy

    It is such a shame that you cannot continue with something you love to do ie singing. I have (supposedly) Acid Reflux/GERD. I also have had many test and they do show signs of reflux but I find it hard to believe that this causes so many other problems which appear to me to be unrelated. Trouble is if the test do not show signs of any other problems there is not much one can do. I do take PPi's but personally anxiety is my worse culprit. I never suffered with anxiety before reflux so really is a continual circle. Hopefully you will find an answer.

    All the best

    Robin

    • robodelfy
      robodelfy robtheprint

      Posted

      Thankyou, yes its been horrendous, and effectively is ruining my life. I have to spend all my time alone when I would love to be with people, and I feel I cant progress at anything in this state. But most of all I just have no idea whats going on

      Thanks for your coment

  • Claire-1975
    Claire-1975 robodelfy

    Posted

    Hi! I suffered from acid stomach for years until it developed to acid reflux and consequently LPR. I was undiagnosed for 10 yrs. Doctors used to deny possibility of acid reflux because I'm thin and so doctors used to tell me "you don't eat just to remain slim". To cut a long story short, finally I met a surgeon who did a 360 degrees NF/HH (1st August 2017). I am a Soprano but I had to stop singing 10 yrs ago. All of a sudden my throat started burning and every time I used to try to sing I ended up with no voice. After surgery I was hoping to start singing again but now I am suffering from gastritis (inflammation of the lining of the stomach). I am still hoping to be able to sing one day!

    I hope that my story will help you a bit.

    • robodelfy
      robodelfy Claire-1975

      Posted

      Sorry to hear you also had to stop singing, that sounds horrible. So the surgey didnt help at all, it just made things worse? I hope you can sing again one day too smile
    • Claire-1975
      Claire-1975 robodelfy

      Posted

      Today I tried digeatibe enzymes and I feel better. Surgery helped me cause at least reflux stopped. I play the flute too so I remained in contact with music. Time will see if I can sing again. Thanks
    • robodelfy
      robodelfy Claire-1975

      Posted

      From your post I got the impression the surgery only made things worse.

      Did you have burning and symptoms even when you weren't talking or singing originally, or was it only when using your voice?

      Thanks

    • Claire-1975
      Claire-1975 robodelfy

      Posted

      Surgery helped me cause reflux stopped. My LPR has been cured as well. I don't suffer from migranes anymore. Yesterday I startex to take digestive enzymes and after meal I felt ok. There is a support group on fb Nissen Fundoplication which heped me a lot. Before surgery I used to feel a burning sensation, bloatness, indigestion. Acid reflux was so severe that it was ruining my life. I am much better now but recovery is a long process

    • robodelfy
      robodelfy Claire-1975

      Posted

      I'm glad to hear the surgery helped you, sorry that you had some other problems because of it.

      Can I ask, with your LPR/reflux, did you exprience your symptoms most of the time, or was it only during and after talking? My symptoms only show up when I use my voice, otherwise I dont feel anything

      Also, did you burp a lot, thats something Ive noticed myself doing

      Thanks, losing my mind a little!

    • Claire-1975
      Claire-1975 robodelfy

      Posted

      Imy LPR was horrible. I had a terrible inflammation in my head which used to cause me frequent severe migranes with vomiting. Besides that I had continuos sinusitis. It all disappeared after surgery.
    • robodelfy
      robodelfy Claire-1975

      Posted

      Hi Claire, sorry to keep asking the same question, but did you have all your LPR symptoms all of the time, or was it only during voice use?

      Thanks

  • farhana71476
    farhana71476 robodelfy

    Posted

    Have they checked you for hital hernia? Also yes if you have silent reflux your throat will hurt and anxiety makes it worse. It is the LES valve that is not working properly. Do not have the nissen fundo for GERD. There are other options. I had a hital hernia and couple of yrs of reflux. Had a nissen and ruined my life. I had changed my diet. Got an food allergy test and eliminated those foods. Once the LES valve doesn't funtion or close properly you can't digest food and the fumes makes it burn. It is wide open. Please have a stomach acid testing done to see if you have low stomach acid. If so that is a easy fix.

    • robodelfy
      robodelfy farhana71476

      Posted

      Thanks

      No I have not been checked for Hiatal Hernia. I have only had the upper airway endoscopy and a Peptest which came back negative. I also tried diets that made no difference. 

      The thing that confuses me is that it only hurts to use my voice, I dont experience burning if I stay silent for a day or so. Also I have tried eating the most acid reflux inducing foods in large amounts, and found it makes no difference. All these things make me doubt reflux.

      What are the best tests to get to see if you have LPR or silent reflux? I would love to get some conclusive tests done. 

      Can you elaborate on why the Nissen ruined your life?  Im sorry to hear that

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