Recurrent NPC neck/jaw/tongue problems

OFD272
OFD272 Member Posts: 5

So a brief overview of my story is that i've been battling with NPC since 2011.  I was diagnosed when I was 20, and have been fighting it ever since.  I have periods of remission, and then recurrences.  I am in my second clinical trial, and have been through about 4 different types of chemo and many radiation sessions.  My question to the community is this: I know that neropathy of the feet and hands is a common side effect of chemo, but Im wondering if anyone else has had neck stiffness, and cramps throughout the neck and jaw.  I've been experiencing numbness and cramping of my tounge as well.  It makes speaking difficult, and sometimes I can't talk clearly at all.  Just looking for feedback, and to see if anyone else has experienced anything similar to this, and how they delt with it if they have. 

 

Thanks.

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    Sorry to hear

    My cancer was SCC of mandible so different. I have also had recurrences but am much older than you. I get some tingling in hands but not in my feet. Half of my tongue gets numb sometimes worse than other times. I haven't found a resolution. Early on, I had therapy and with some stretch exercises really loosened up my neck stiffness. My jaw generally hurts or is uncomfortable, I take hydrocodone to ease it. I do encourage you to ask for therapy to loosen your neck, it can work. 

  • MGC
    MGC Member Posts: 72 Member
    hwt said:

    Sorry to hear

    My cancer was SCC of mandible so different. I have also had recurrences but am much older than you. I get some tingling in hands but not in my feet. Half of my tongue gets numb sometimes worse than other times. I haven't found a resolution. Early on, I had therapy and with some stretch exercises really loosened up my neck stiffness. My jaw generally hurts or is uncomfortable, I take hydrocodone to ease it. I do encourage you to ask for therapy to loosen your neck, it can work. 

    neck/jaw/tongue problems

    Hello and welcome to he board.

      Did you have radiation to the neck? Some of the symptoms you refer to are not that uncommon to head and neck folks who have recieved radiation as part of their treatment.

  • MrsBD
    MrsBD Member Posts: 615 Member
    Neck Stiffness

    Your battle has been a tough one, but you've found a good site to get advice. Radiation can cause fibrosis and other conditions that make your neck stiff. There are several helpful exercises including the lateral neck stretch which really eases my stiffness. It's important to do it every day to maintain your flexibility. Hopefully it will help you too.

  • Viilik70
    Viilik70 Member Posts: 73
    Been through this a couple

    Been through this a couple times, once when I was 25 and at 39. I'm at 45 now and yes I get jaw, tongue and neck spasms. I don't have the neck spasms near as much as the jaw and tongue spasms that cause me to not be able to talk for a minute or two. My wife probably enjoys that! Lol. Just wanted you to know you are not a Lone Ranger. God bless!

  • katenorwood
    katenorwood Member Posts: 1,912
    Yes

    My onc's can't give me a real good concept of why this happens.  My dx is different.  The surgery itself caused many of these issues as they had to go so deep to get the tumor, and it was by a main nerve in the neck.  Rads do cause some crap damage also...but in my case it was the surgery itself.  Some days are better than other's, answering the phone and getting people to understand me is a riot. I pray they can figure this out for you and get you a bit of relief !  Katie

  • Hondo
    Hondo Member Posts: 6,636 Member
    NPC

     

    As you can see a lot of NPC survivors here, I have completely lost my ability to swallow and my tongue is numb and makes speaking very hard. Click on my name Hondo and you can read up on what I been doing. Hoping the best for you

     

    Hondo

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    ofd, I just want to say i'm

    ofd, I just want to say i'm praying for you and i hope you get the answers you need.  i have neck stiffness but mine is from surgery.  i also get cramps under my chin when i yawn but nothing to serious so i really don't have any answers.  i never had chemo, only rads and surgery (several surgeries).  i hope it works out for you and the problems subside with time.

    God bless you,

    dj

  • Eversteve
    Eversteve Member Posts: 23
    In response to Recurrent NPC neck/jaw/tongue problems

    OFD272

    I am not sure if this is apprpiate but thank you. I have had exactly the same experiance as you and now have exactly the same problems as you. I was starting to get paranoid yself and I remembered I signed up on this site many moons ago.

    All I can say is stay strong mate or Ms mate and red the posts on here - in one week they have helped me so much.

    Regards the neck stiffness - just a question - have yu fallen for the trap as I did and end up behid a keyboard ?.........just a question OK

    You will be OK, we shall fight this together - all of us on this site

  • Eversteve
    Eversteve Member Posts: 23
    OFD272 - Recurrent NPC neck/jaw/tongue problems

    You seem to have had some good advice already from others, advice that I have also taken on bord with gratitude.

    I am starting to get a little bit worried (well lots really), because after the 4 years or so in remission, I am having the sme problems it seems as you, especially relating to your complaints of neck stiffness, and cramps throughout the neck and jaw.

    The Jaw problem seems to be quite common (search it on this site) but why it has started to happen to me NOW, God only knows.

    The neck stiffness and cramps started about a month ago and at first I put it down to sitting incorrectly at my laptop or sitting to log at my laptop....but now you mention it, I am unsure. I dont know about you, but I almost sieze up.

    You must understand however (trust me - I dont mean this in a patronising way), that whatever anyone states, again my personal view is that most of us ae weaker physically than we used to be - maybe mentally as well, reading some of my emails / comments again. ANYWAY - this will sound crazy, but I really am starting to believe my own warped logic......I think we are having "growing pains".....now hold on a minute whilst I explain before laughing at me. Everyone of us on this site must have experianced weight loss to varying degrees. I was told that the first thing to go was the muscles.

    Now have a look at this http://www.webmd.com/children/guide/growing-pains ......I know it is a stretch, but I reckon I could be onto somehing here - BASICALY we are rebuilding ourselves internally.

    One last thing I would like to offer, again from a personal perspective is - stay off pain killers, stay of as much medication as you can take - this allows you "to feel" what is happening better.............

    I wish you all the best mate - I repeat a rather crude comment I have mad - NPC is a c**t, I hate it with a vengance