Tongue pain

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robinleigh
robinleigh Member Posts: 297
in Head and Neck Cancer #1
Has any one had tongue pain after bot surgery atter six months out. Still on pain Meds a few times a day. is it time to see a physical therapist to work on tongue exercises?

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  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
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    Hi Robin

    I have tongue pain but mine is from nerve damage due to radiation treatment on the side of my face. I too live on the pain meds and have come to except it as a part of my new normal. I wish and hope you get relief from yours

    All the best
    Hondo
  • Dav1965
    Dav1965 Member Posts: 132
    #3
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    Hondo said:

    Hi Robin

    I have tongue pain but mine is from nerve damage due to radiation treatment on the side of my face. I too live on the pain meds and have come to except it as a part of my new normal. I wish and hope you get relief from yours

    All the best
    Hondo

    My tongue
    I had 95% of my tongue removed and replaced with my thigh. My good part of my tongue is hyper sensitive. I can not eat ice cream because it is too cold to eat. The cold hurts my tongue to bad. My surgery was in July 2010 so i dont think its going away. Good luck with you and God bless. David
  • Greend
    Greend Member Posts: 678
    #4
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    Dav1965 said:

    My tongue
    I had 95% of my tongue removed and replaced with my thigh. My good part of my tongue is hyper sensitive. I can not eat ice cream because it is too cold to eat. The cold hurts my tongue to bad. My surgery was in July 2010 so i dont think its going away. Good luck with you and God bless. David

    Tongue
    I don't have pain, mine is just totally numb.

    I thinnk I will take my situation over the pain. :>)
  • robinleigh
    robinleigh Member Posts: 297
    #5
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    Greend said:

    Tongue
    I don't have pain, mine is just totally numb.

    I thinnk I will take my situation over the pain. :>)

    Pain
    I think we need to identify the cause of the pain because it sounds like tolu guys at least know why there is pain sometimes not knowing why causes more anxiety. Taking pain Meds this far out makes us wonder if that is normal to still be using oxycodone a couple of times a day before meals so there won't be discomfort during the meal .
  • robinleigh
    robinleigh Member Posts: 297
    #6
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    robinleigh said:

    Pain
    I think we need to identify the cause of the pain because it sounds like tolu guys at least know why there is pain sometimes not knowing why causes more anxiety. Taking pain Meds this far out makes us wonder if that is normal to still be using oxycodone a couple of times a day before meals so there won't be discomfort during the meal .

    The net said the tongue is still not completely healed and that there is probably nerve damage from the base of tongue surgery. Does this get better over time. Anybody know how long or is it a side effect for an indeterminate length. Anybody ever try working with a speech therapist for tongue exercising.
  • Angel6
    Angel6 Member Posts: 8
    #7
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    Dav1965 said:

    My tongue
    I had 95% of my tongue removed and replaced with my thigh. My good part of my tongue is hyper sensitive. I can not eat ice cream because it is too cold to eat. The cold hurts my tongue to bad. My surgery was in July 2010 so i dont think its going away. Good luck with you and God bless. David

    your experience
    Dav1965- May I ask if you also have a laryngectomy stoma? My husband is being advised to have his whole tongue removed and reconstructed with thigh muscle and have a Stoma placed. We are looking for survivors for advice as to what to expect after surgery. Thank you for your time.
  • Dav1965
    Dav1965 Member Posts: 132
    #8
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    Angel6 said:

    your experience
    Dav1965- May I ask if you also have a laryngectomy stoma? My husband is being advised to have his whole tongue removed and reconstructed with thigh muscle and have a Stoma placed. We are looking for survivors for advice as to what to expect after surgery. Thank you for your time.

    I dont know
    I dont know what that is. I had squamas cell cancer in my tongue. They removed 95% and replaced it with my thigh also. I dont know what a stoma is. I will look it up though. My surgery was 15 hours long. I also had double neck dissection while i was there. Cancer on the left side about 10 nodes. I was placed in a coma for a couple days. They took a machine and stuck it in my mouth every 2 hours to check for blood flow in the new veins in the tongue.

    I had a scar about 12 inches on my leg when i got to see it. Im guessing they need a lot of veins. Also i had a trach because the tongue was so swollen. I kept that at home for a while. Maybe 2 weeks. I stayed in the hospital for about 2 weeks before i could go home. The trach was scary for me. I did better at home with it than at the hospital. I would recomened a cool humidifier for the room where the sick one will be. It did wonders for me.

    My main foods consist of soft things because i have a hard tome eating other things. Mashed potatoes, grits, anything soft because i cant really move my tongue. I have had surgery to shape my tongue 2 times. Each time i can talk a little better and eat a little easier. I am supposed to have one this month but the doctor said i was having to much jaw problems from radiation to have surgery again this month.

    One last thing you will probally be on a feeding tube for a while. I was for 8 months. The tongue swells so bad and goes down so slow it is a long battle. But one you can win. The doctor told me i would never eat bread. steak, or salad again. I can eat steak now. Its hard to but i can do it.

    Another good person to ask is Hondo i think he went through the same thing as me. He has helped me out a lot. Im sorry for what you are going through but i am glad you found this sight. Feel free to e.mail me here or at Dav1965@aol.com God bless David

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