Bilateral Vocal Cord Paralysis

CathyHorner
CathyHorner Member Posts: 29
in Head and Neck Cancer #1

Both my vocal cords are stuck closed. Pretty frustrated. I got through my rad/chem in Aug 2013, good Petscan in November. I had cancer of the larynx. First my ENT wouldn't take out my trache because of swelling. That went down but still had a restricted airway. He sent me to Vanderbilt (5hr drive) to see if they would remove scar tissue. Well, that doc was discouraging. She never said anything about scar tissue but how my vocal cords are stuck shut preventing me from breathing. I kinda knew that already but what upset me was she said "you'll never be able to do the things you are wishing for like hiking, biking, etc and probably wear a trache forever".  I cried the whole 5 hour drive home.  However, from what I have read on line she is wrong there are things you can do, some surgeries. My next plan is to go to John Hopkins in Baltimore.

One thing the Vanderbilt doctor did say is there is a slight slight chance that the paralysis could heal itself. The nerve could possibly heal if it was not damaged too bad. To wait a year. I read that too. I was hoping to find a story on a message board where this happen to someone but haven't, especially with both cords stuck. I can swallow ok and although my voice is weak it has gotten a little better. The problem is breathing and I hate the trache so bad!

Comments

  • lornal
    lornal Member Posts: 428
    #2
    Vocal Cords

    I had the opposite probem.  I couldn't swallw, and my vocal cords were stuck open. After 13 dilations of my esophagus, the doctor saw "somthing"  turned out to be SCC - again.  For 18 months, the doctors thought my problems were from radiation scar tissue. 

    One morning I woke up, and I could talk.  Talk or breath - I can't to both.  I ended up with a trache the next week - hated it.  Only had in 10 days, and then I had a total laryngectomy.  I hate that I can't talk - but, breathing isn't a probem now.  (It did take awhile to convince myself I could breath fine).  Forntatley, no chemo or radiation - at least not at this time - and I can eat again.

    Hopefully, they will be able to do something to get you breating again.  I'd take breathing over talking, any day.

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
    not the same

    i did not have the same problem. mine was one cord would not work and was open all the time. it was not fun to deal with but over time i did ok. when first told, they said it may come back with time. well it did about 11 months later like they thought it might.  Saddly two years latter it became dorment.

    I have a trache now. for me i felt the help right away and did not have problem with it. over time it's like wearing a neck tie all day long without having to worry about spilling food on it, :-)

    john                                                                                                                                                                                                                                                              

  • wmc
    wmc Member Posts: 1,804
    #4
    Very sorry...

    Very sorry you have to have a trache and your vocal coard problems. I don't know all your medical condition but you still can hike and bike and almost anything you want with a trache. Don't try swimming, that's too risky. I had larynx cancer and due to server bullous emphysema, COPD, I could not servive radiation or the surgery. The decision was made to take out my larynx [voice box] and have a trache forever. Yes at first it is tough but it gets better all the time. I have been told what a person with a laryngectomy can not do. Well it is true some can't do those things and others can. I did not have chemo or radation and have a TEP in my neck so I can talk. My job at work is mostly a desk job but I walk an average of three miles a day. I can blow my nose, [were not suposed to be able to] whistle, and blow out candles and blow up a balloon. I go where I want and order at the drive through. I plan to take short hikes in the mountains, which I could not do before my trache, not enought air because of my lungs. So much of what we can do is up to us. It took me two months to teach myself how to whistle again, but I did it. I have never had any speech theraphy after the surgery or taught how to eat again. I was all self taught. My doctor didn' think I really needed it. He was right, it was up to me. Yes I wish I did not lose my voice or have a trache but I am learning to get use to it. When I order food now the person does really listen now and never really did before, so I get my order correct better than before.  I do hope you get your voice back and it is OK, and the trache can come out where you can get back your health. But if it doesn't, you will be ok and able to handle that as well.  Prayers go with you.

    wmc

  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hi Cathy

    Hi Cathy

    That is correct your body has a way of healing itself, we need and truth our doctors but they don’t everything. Your will and determination in keeping your mind focus is something our doctors don’t know anything about. It is the deference why some heal faster than others, read my post, I been through hell and few times and was told I would not live passed 2006, still here.

    My Oncal doctor was so upset with me living because now he does not know what to do with me living passed the time everyone else died. I had to get rid of him and my old ENT and find doctors who were willing to take on a case like me, it was hard but I did find some.

    You can do it too if you put your mind to it and have faith that God will help you.

     

    God bless

    Hondo

     

     

     

  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    #6
    Hondo said:

    Hi Cathy

    Hi Cathy

    That is correct your body has a way of healing itself, we need and truth our doctors but they don’t everything. Your will and determination in keeping your mind focus is something our doctors don’t know anything about. It is the deference why some heal faster than others, read my post, I been through hell and few times and was told I would not live passed 2006, still here.

    My Oncal doctor was so upset with me living because now he does not know what to do with me living passed the time everyone else died. I had to get rid of him and my old ENT and find doctors who were willing to take on a case like me, it was hard but I did find some.

    You can do it too if you put your mind to it and have faith that God will help you.

     

    God bless

    Hondo

     

     

     

    Cathy

    My vocal cords are 1/2 fused from radiation.  I went to an ENT specializing in vocal cord issues for professional singers/speakers.  She has a procedure where she could cut my vocal cord where it is 1/2 fused, place a membrane in it for a week (to keep it from regrowing together).  I'm still debating doing the procedure, but thought I'd just toss the idea out for you to investigate, if it would even be viable for your condition.  Never give up!!!  Hoping you can find some help!! Feel free to PM me for Dr name, etc. if you're so inclined.

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