Out of the box ideas for Trismus

dadio
dadio Member Posts: 3
in Head and Neck Cancer #1

Hello everyone

Brand new to this forum (not brand new the NPC), diagnosed 2008, and 2012, same spot same everything, came back 3.5 years after first treatment with chemo and rads.  Took me a good 2 years to recover from the first treatment with minor issues.  Second treatment has not been so kind.  Everything above the shoulders is messed up, hearing, speech, swallowing, breathing, stiff neck and of course the dreaded mouth opening.

Finished my last round of treatment back in Feb of 2013 since then been getting worse.  Of all the problems if I could only fix one, it would be the mouth opening.  Only have about 1cm of opening between my front teeth.  Have the Therabite, have the Dynasplint, used the tongue depressors, currently using the Dynasplint 30 minutes 3x a day and just maintaining 1cm.

Looking for any out of the box ideas, I am trying acupuncture but no real success.  Pretty much desperate here so I would try anything that makes sense.  Open to all suggestions.  Thank you

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
    dadio, i'm so sorry you are

    dadio, i'm so sorry you are having these problems.  i know there are several others who have the problem of not being able to open their mouth and I'm sure they will chime in.  i never had chemo so i don't have that problem but wanted to say I'm praying you find something that will make you able to open.  i can only imagine how frustrating that must be for many reasons.  cancer tx is not easy on anyone, that's for sure.  in fact, they say H&N cancer tx is one of the most brutal and from all i've lived thru and read here, I'd have to agree.  I don't think it could get much worse than what we go thru and then suffer with long term.  i hope you get your wish and I'll be praying for you.

    God bless you,

    dj

  • wmc
    wmc Member Posts: 1,804
    #3
    I have no Idea, or knowledge, but questions.

    I have no knowledge on this, but a few questions. First 1cm is only about the size of a finger. Does it just lock up? Or is it because of pain or both. I would think it hurts like hell to try to stretch it three times a day and still only get 1 cm. That Dynasplint seems pretty intence just seeing it. Have you [or your doctor] tried a strong muscle relaxer to help the muscles relax more. Or even Valum which is also used for spasms. I mean to the point of being overly relaxed like Fxxx up relaxed. I am guessing all this has been tried, but Im just going for what the heck it might not have been. Is it in part, due to having the radation damaged the muscles.  Chiropractor? I have know people who's jaw locked open, and had to see the doctor to get it released, maybe this is the opposite. Like I said I'm just guessing 

    I can only hope someone might have a solution for you. Trully sorry I have nothing.

    Bill

  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Hi dadio

    Welcome to the family of NPC survivors on CSN H&N. I too have been through the treatment for NPC twice, we are a rare breath my friend. What I am hearing about your side effects sound normal but with me I did not start to lose the hearing until 6 years passed the second treatment. Also same problem with the jaw, I can only open it ½ inch. I too used the Therabite and I also have a $3,200 dollar useless Dynasplint all they will do after a while is to mess your teeth up and make them hurt like hell. But we have to keep using them as it is the only way I found to keep the little bit of opening I have. I will PM you my contact info, for hope you plan on staying.

     

    Tim Hondo

Discussion Boards