Tongue reconstructive surgery

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

Well, it's been 4 months and I'm still struggling with my tongue. It's apparent it won't get much better now that it's healed. I can't envision having my tongue tied the rest of my life.

Has anyone had post surgery reconsruction of their tongue? Mine is tied down to the left and is having a significant affect on my speech and self image. There must be options.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited August 2016 #2
    4 months post

    Steven,

    It is nice to hear from you, I am sad to hear about your tongue.  To get rid of the cancer often seems to be the easy part.  The recovery and return to normal life is the trick.  There have been other H&N members with post treatment surgery to improve the usefulness of the tongue.  This site gets a lot of looks and someone should respond.

    At 4 months I still had a long way to go.  I am still seeing improvements at 4+ years out.  Realize that those rads did a number on you, just because what you see is healed doesn’t mean everything is back in order.

    Does your doctor have a plan for you?

    Wish you much luck, you deserve it.

    Matt

  • Tonita
    Tonita Member Posts: 197 Member
    edited August 2016 #3
    I don't remember what

    I don't remember what specific problems you were having with your tongue, but I'm at my wit's end with mine.  I've been told that I could have surgery to "fix" the problem but the surgeon thinks that speech therapy will help.  I have my doubts about the latter but I'm willing to give it a try.  I'm not up for another six weeks of mush and liquid food but if this tongue doesn't feel better soon, I may have to opt for the surgery.

    It's been almost six months for me.  It's maddening!

     

  • stevenpepe
    stevenpepe Member Posts: 234
    edited August 2016 #4
    CivilMatt said:

    4 months post

    Steven,

    It is nice to hear from you, I am sad to hear about your tongue.  To get rid of the cancer often seems to be the easy part.  The recovery and return to normal life is the trick.  There have been other H&N members with post treatment surgery to improve the usefulness of the tongue.  This site gets a lot of looks and someone should respond.

    At 4 months I still had a long way to go.  I am still seeing improvements at 4+ years out.  Realize that those rads did a number on you, just because what you see is healed doesn’t mean everything is back in order.

    Does your doctor have a plan for you?

    Wish you much luck, you deserve it.

    Matt

    Hey Matt, I meet with my

    Hey Matt, I meet with my surgeon next month and will ask. I know I'm still healing, especially with my voice, which the radiation has done a number on. It's hard to imagine there are no remedies for this.

  • stevenpepe
    stevenpepe Member Posts: 234
    #5
    Tonita said:

    I don't remember what

    I don't remember what specific problems you were having with your tongue, but I'm at my wit's end with mine.  I've been told that I could have surgery to "fix" the problem but the surgeon thinks that speech therapy will help.  I have my doubts about the latter but I'm willing to give it a try.  I'm not up for another six weeks of mush and liquid food but if this tongue doesn't feel better soon, I may have to opt for the surgery.

    It's been almost six months for me.  It's maddening!

     

    Basically, my tongue is tied

    Basically, my tongue is tied down to the left, making speech noticeably marked. My tumor was small, but still resulted in a substantial portion of my tongue being removed. I did not have a flap, probably due to the smaller tumor, so now it healed to the left and annoys the heck out of me.

    I can eat just about anything, fortunately. It's my speech I worry about. I'm not sure if therapy will help much.

  • wmolivertx
    wmolivertx Member Posts: 16 Member
    #6
    Tongue

    My tumor was on my tonsil and in 2000 went through radiation protocol.  In 2008 I felt a weird sensation in my tongue.  Came to learn that the cranial nerve to my tongue was paralyzed.  In my case it not only affected my speech but also my eating.  I did do speech therapy but in my case really did not help.  I would encourage you to try just to see if it might help you.

     

    Good luck and keep the faith. 

  • theo64
    theo64 Member Posts: 2
    #7
    steven

    Sorry to hear what happened with your tongue, I have bad a tumor removed from the left side of my tongue at the base, so they did reconstructive surgery & now I have what they call a none functional tongue, my speech is real bad now & speech therapy didn't help at all, now I'm unable to eat or swallow anything! It has been two years now cancer free thank god, you will be able to handle it, just like myself you will get used to it! Sorry to so bold about it, but try doing all this on your own them doctor's say this & that may help but it only puts money in somebody's pocket, take my advice & do it on your own you'll be better off! I have nobody to talk to, nobody takes time to listen or try to! It's hard but you can do it! I have faith! Have a great day!

  • Hondo
    Hondo Member Posts: 6,636 Member
    edited September 2016 #8
    Don’t give-up Steven

     

    Sometime it just takes longer with some people, just don’t give-up yet. Every day you need to do the exercises your doctor gave you to do. Also if you do hear the work PEG tube, it is not so bad I just made my 4th year with Peggie Tube

     

    All the best my friend

     

    Tim

     

  • slk2015
    slk2015 Member Posts: 54
    edited September 2016 #9
    Tongues

    Hondo mentioned doing the exercises the doctor gave you.  Last visit, mine told me to do them "forever"!  I'm not sure he was serious, but he might be.  Anyway, one he gave me was to "wag" my tongue side to side, which always makes me feel like those old cat clocks with the eyes that moved and the tail wagged!  It makes me laugh, anyway!  

Discussion Boards