Undiagnosed and rare conditions
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Paralysed vocal cords

bpd512bpd512 Member Posts: 3 Listener
Hi i'm wondering if anyone else has suffered this.  I had a total thyroidectomy 6 years ago. woke up and not been able to breath properly since. was told one side is paralysed in the open position and the other side is dysfunctional.  not treatments offered due to breathing problem. i have just been left like this. 

Replies

  • Sandy_123Sandy_123 Member Posts: 1,151 Pioneering
    Hi @bpd512 welcome to forum.  Sorry to read that your having difficulty with breathing after thyroidectomy, I think you should seek advice from your gp about after care, or be referred to see someone. I'm presuming you've already done this, but it may be worth going back. Did the hospital give you any advice on this happening? 
  • chiariedschiarieds Community Co-Production Group Posts: 8,056 Disability Gamechanger
    Hi @bpd512 - welcome to the forum. I'm so sorry to read about your breathing problems, & you have my total empathy. Our youngest daughter had breathing problems from birth, necessitating a tracheotomy at 1 week old.....after a while we were told one of her vocal cords was paralysed, like yourself, but in a closed position. I queried this as she was able to talk, & unfortunately it was the case that both of her vocal cords were indeed paralysed in the closed position.
    I can't imagine what you've gone through, & fast forward to today, that you're not receiving help. May I ask whom you've turned to for help, such as your GP, whom @Sandy_123 mentions?
  • bpd512bpd512 Member Posts: 3 Listener
    Morning.
    yes immediately i was asked to be referred to an ENT specialist in Nottingham. after going back and forth for almost 2 years i gave up. Just kept being told, well we could try botox injections but at a cost of loosing my speech completely and the specialist was not willing to do this. i have nothing wrong with my voice apart from it tires easily and have a weak voice  at times. Just have been told time and time again that they dont know why i cant breath but my breathing is so bad now that my mobility is badly affected. im going to ask my GP again for some advice as i have given up the last couple of years trying. How is your daughter now chiarieds ?


  • chiariedschiarieds Community Co-Production Group Posts: 8,056 Disability Gamechanger
    I hope you can get some help with this; it's a difficult balancing act trying to maintain your voice & find easier breathing. Sadly we lost our youngest daughter when she was 23 months old. In her case her Drs didn't know why her vocal cords were paralysed in the midline position, & I didn't find out the cause (a neurological complication of a genetic disorder) until many years later when her older sister asked me to look into it, & we needed to find out more for our family.
    Do please let us know how you get on. My best wishes.
  • Caz_ScopeCaz_Scope Posts: 578

    Scope community team

    First of all, a warm welcome to the community @bpd512. It's good to have you with us, although I know that it's not the best of circumstances that have brought you to us today. :)

    Sorry to hear about all that you've gone through and that you're still struggling with your breathing. I'm afraid I don't really have any advice to add. But I agree with you. I do think that it would be a good idea to go back to your GP and push them to see if there's anything more they could do. 

    @chiareds I'm so sorry to hear about your daughter and my thoughts really do go out to you. Thank you for sharing your advice on this with bpd12. 

    All the best on this @bpd12. Please do let us know what you decide to do and how you get on if you do go back to your GP. :)
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  • bpd512bpd512 Member Posts: 3 Listener
    I'm so sorry chiarieds to hear about your daughter.  Thank you for taking time to message me. i will keep you updated should i have any luck with my GP.
    very best wishes  :)
  • chiariedschiarieds Community Co-Production Group Posts: 8,056 Disability Gamechanger
    Thank you @bpd512 - I don't normally mention my youngest daughter, but your post about 'paralysed vocal cords' certainly caught my eye (as both her vocal cords were paralysed, but in the mid-line, or closed position), so I do mention her on occasion. I do know that she had severe breathing problems, yet could talk quite clearly, but doing so caused her breathing problems to increase. Your problem is exactly the same, only different, & from a different cause, & I do sincerely hope your GP can help you further. Please do kindly let us know how you get on, & I wish the very best for you.
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