Post surgery tongue reconstruction

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stevenpepe
stevenpepe Member Posts: 234
in Head and Neck Cancer #1

Has anyone here experienced tongue reconstructive surgery after their initial tumor dissection?

My surgery and post rad treatments, has left my tongue tied down on the left side, making speech quite difficult. I plan on asking my surgeon for options in a couple of weeks.

I cannot imagine living the rest of my life in this condition, especially with the advancement of techniques available today.

Is it reasonable to expect a better outcome?

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  • Runningwahine
    Runningwahine Member Posts: 15
    edited July 2016 #2
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    Hi Steven, I am not quite

    Hi Steven, I am not quite finished with my rad and chemo tx. I am at halfway. I'm not really happy with how the tongue is shifting and changing. I had an easier time speaking before I started treatments. All the doctors tell me is that it could take months after treatment before it becomes "normal"  So happy for you that you are through with treatmen, good luck recovering!

  • Hondo
    Hondo Member Posts: 6,636 Member
    edited July 2016 #3
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    Hi Steve

     

    You will be amazed at how well you can do without your tongue. My tongue is almost dead due to long term radiation damage, but I have found ways of making sound that my wife and children understand what I am saying. If you are someone I just meet you would have a problem but after a while of hearing me talk you start to understand. Yes it sucks but it is better than not being able to say nothing.

     

    Tim

     

  • swopoe
    swopoe Member Posts: 492
    #4
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    Give it some time. You may

    Give it some time. You may see things improve over the next several months. My husband's ENT said he would see improvement for at least 8 months. So see how things go. Hang in there!

  • zaac23
    zaac23 Member Posts: 27
    #5
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    tongue reconstruct

    i had a tongue reconstruct 5 years ago and have it tied to my left gum.  my surgeon was not thrilled to unattach it because after 38 radios and the surgery itself he said it is close to the bone and can be very troublesome. you said there are many advances in medicine and i would be very interested to hear his answer. I had several teeth pulled and had to have 30 hybarbaric dives before oral surgeon would touch me(20 before and 10 after) I think they just don't like to touch radiated tissue; and i have read  roger ebert's book about his struggles with oral cancer procedures. With a little speech therapy you can speak well again. I do

  • Josephwc
    Josephwc Member Posts: 69
    #6
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    Tongue reconstruct and fifth week post radiation

    I have experienced ups and down during and after my radiation. I think everyday now I am asking my family if they think my speech is worse, it seems it to me.  I keep reminding myself about the quick healing just after my surgery and I am hoping for more healing now 

     I have been experimenting with foods that I can eat but have found most causes more ulcers. My speech is off at the moment but I believe it is in the coming weeks for me that I will start to see real improvement. 

     

    Keep your head up and I will try and do the same. Keep me posted. 

  • SusanUES
    SusanUES Member Posts: 125
    #7
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    Think it's too soon to make that decision...

    Steven, you've only just finished rads so swelling, lesions, etc. are still very much with you and you're still "cooking."  I didn't speak at all for six weeks after my last treatment, it was all too painful.  You have to give your body and your mind time to cool down, time to adjust.  Chances are your speech will always be compromised but it won't be as difficult as it is right now.  I'm at 90% and I've learned to live with it...the clarity and distinction are gone and I'm very slurry after eating, but for the most part I'm quite understandable and have very little problem in conversing.  Unless your job entails a great deal of speaking, i.e. salesman, teacher, etc., you should be okay going forward.

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