Jaw opening after treatment?

Hondo
Hondo Member Posts: 6,636 Member
edited March 2014 in Head and Neck Cancer #1
Hi everyone, I just want to know if anyone's having problems opening there jaw after treatment. When I did my first radiation for NPC I lost some movement in the jaw but I was still able to open my mouth about 1 ½ inch. When the NPC came back the doctor did radiation again and I could only open my mouth ¾ of an inch. From that time to now I only have ½ inch of movement in the Jaw.

The Problem with this is trying to eat, but I still get it in there by using a smaller fork. I tried Therapy to help open it and also used a Thermo Bite I got off the internet, none of it worked.

I would like to know if anyone else has this problems and what you are doing about it.

Comments

  • BeenThereDoneThat
    BeenThereDoneThat Member Posts: 33
    #2
    Open Wide
    Hondo,

    I too had this problem after my treatment. Couldn't open up wide enough to put much in my mouth.

    While I still can't open as wide as I could prior to the radiation, it is much better. I slowly woould open and close my mouth to 'stretch' it. Learned the hard way that doing it faster and too often would hurt!

    Not sure if it was in my mind, but putting heat on the worst side (my left) seemed to make it feel better.

    Good luck!

    George
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #3
    Trismus
    I experienced the same. I would venture that most people who go through our experiences go through it to some degree, probably a lesser one, for most, than you are describing.

    Following surgery, radiation, and chemotherapy, I saw both a speech therapist (also ostensibly responsible for helping me to swallow again) and a physical therapist. The PT was very good at her craft, but admitted that there were few if any others in our area who were expert in this particular area, that she was a pioneer. I am not sure of your circumstances or even how things might have changed since my surg and treatment. I only know that when I first went to see this wonderful lady in early '06, she was one of a kind in my particular 'hood.

    The heating pads that Beentheredonethat suggests are a great idea, I think, as they were part of PT's treatment for me. I saw her (PT, not Beentheredonethat) three times a week at first, and among the things we did, there was always a 20 - 30 minute period of heating pad wrapped around the lower part of the face.

    Additionally, we did a repetition of various jaw movement exercises (along with tongue stuff in my case). Over time, my ability to open the mouth increased from about 21mm to 29mm (and I am going on memory here). She advised that minimal adult opening should be in the 40mm+ range, again going by memory, and that we could hopefully get to 35mm. Sadly, we got to 29mm and my coverage ran out.

    I am about to see her again, or so ENT Man suggests. My mouth has closed up to some great degree, as you describe, despite the fact I eat, despite the fact I talk.

    (I, too, have a Therabyte device, by the way.)

    If you are like me, you do not use your device religiously. If you are like me, you do not have a daily regimen for doing the exercises a PT might have taught you.

    It is clearly true, based on conversations with both ENT Man and PT Lady, that scarring from surgery and radiation can have a lasting effect on mouth opening. It is equally true, from my experience, that diligent personal effort (aided by a coach, as it were) can be of great assistance in encouraging the muscles to work to their best possible ability.

    In other words: talk to your doctor about a referral for phyical therapy (NOT speech therapy, but physical therapy) and, as well, get back to work on that device and with other exercises you have been taught.

    Best wishes.

    Take care,

    Joe
  • pk
    pk Member Posts: 192
    #4
    soccerfreaks said:

    Trismus
    I experienced the same. I would venture that most people who go through our experiences go through it to some degree, probably a lesser one, for most, than you are describing.

    Following surgery, radiation, and chemotherapy, I saw both a speech therapist (also ostensibly responsible for helping me to swallow again) and a physical therapist. The PT was very good at her craft, but admitted that there were few if any others in our area who were expert in this particular area, that she was a pioneer. I am not sure of your circumstances or even how things might have changed since my surg and treatment. I only know that when I first went to see this wonderful lady in early '06, she was one of a kind in my particular 'hood.

    The heating pads that Beentheredonethat suggests are a great idea, I think, as they were part of PT's treatment for me. I saw her (PT, not Beentheredonethat) three times a week at first, and among the things we did, there was always a 20 - 30 minute period of heating pad wrapped around the lower part of the face.

    Additionally, we did a repetition of various jaw movement exercises (along with tongue stuff in my case). Over time, my ability to open the mouth increased from about 21mm to 29mm (and I am going on memory here). She advised that minimal adult opening should be in the 40mm+ range, again going by memory, and that we could hopefully get to 35mm. Sadly, we got to 29mm and my coverage ran out.

    I am about to see her again, or so ENT Man suggests. My mouth has closed up to some great degree, as you describe, despite the fact I eat, despite the fact I talk.

    (I, too, have a Therabyte device, by the way.)

    If you are like me, you do not use your device religiously. If you are like me, you do not have a daily regimen for doing the exercises a PT might have taught you.

    It is clearly true, based on conversations with both ENT Man and PT Lady, that scarring from surgery and radiation can have a lasting effect on mouth opening. It is equally true, from my experience, that diligent personal effort (aided by a coach, as it were) can be of great assistance in encouraging the muscles to work to their best possible ability.

    In other words: talk to your doctor about a referral for phyical therapy (NOT speech therapy, but physical therapy) and, as well, get back to work on that device and with other exercises you have been taught.

    Best wishes.

    Take care,

    Joe

    mouth and jaw exercises
    My husband finished rads on Monday. He was sent home with jaw exercises. He is to open his mouth as wide as he can and hold it open for 60 seconds then close and repeat 4 more times. He should try to go through this regime atleast 4 times a day. The goal is to be able to put 3 fingers inside your mouth opening. He's at 2 fingers now.
    PK
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #5
    pk said:

    mouth and jaw exercises
    My husband finished rads on Monday. He was sent home with jaw exercises. He is to open his mouth as wide as he can and hold it open for 60 seconds then close and repeat 4 more times. He should try to go through this regime atleast 4 times a day. The goal is to be able to put 3 fingers inside your mouth opening. He's at 2 fingers now.
    PK

    exercises
    PK, that was one of mine as well, although I do not recall doing any exercise for 60 seconds without a break. (It sounds painful, but I just tried it, and it's not so bad.)

    Others I had included jutting the lower teeth and jaw out at far as I could and holding that for a given number of seconds, seems like 15 or 20 at the time, but I was not too far past surgery and she was new at it. Others were shifting the lower jaw to the right as far as possible and holding it, and then repeating in the other direction. Others were tongue-related so don't apply here.

    In any event they worked for me, as we measured at the beginning and end of every visit and there was almost always clearly visible progress (which may be why some of us, me anyway, let such exercises fall by the wayside after a point -- no VISIBLE signs of progress; maybe it is simply that, again this may be only me, we come to think that any progress should be permanent since other people don't 'regress' from their childhood learning to chew, open mouth, etc. But I digress.

    Two fingers is a fine start, PK, and three fingers an excellent goal. In my case, I GOT to two fingers with hope for a bit more (but probably not an entire additional finger). I am now back to about a thumb and headed for some more PT, just today scheduled, and looking forward to it.

    Best wishes to your husband for complete and satisfactory recovery.

    Take care,

    Joe
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    BeenThereDoneThat said:

    Open Wide
    Hondo,

    I too had this problem after my treatment. Couldn't open up wide enough to put much in my mouth.

    While I still can't open as wide as I could prior to the radiation, it is much better. I slowly woould open and close my mouth to 'stretch' it. Learned the hard way that doing it faster and too often would hurt!

    Not sure if it was in my mind, but putting heat on the worst side (my left) seemed to make it feel better.

    Good luck!

    George

    BeenThere


    Thanks for the comment, I am thinking about using Infra-red heat or maybe Acupuncture. I am not sure right now as I was hoping to see if anyone else had experimented with this problem first. Thanks again
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    pk said:

    mouth and jaw exercises
    My husband finished rads on Monday. He was sent home with jaw exercises. He is to open his mouth as wide as he can and hold it open for 60 seconds then close and repeat 4 more times. He should try to go through this regime atleast 4 times a day. The goal is to be able to put 3 fingers inside your mouth opening. He's at 2 fingers now.
    PK

    Joe / PK


    Thanks for the advice, I did do some Therapy but it was three years after my second radiation. My big problem was that Doctors where I live have never see anyone with NPC before, so they did not know what to really do for me at the time. But I look at the good side, I am still alive, and that's what counts the most.
  • seenanN
    seenanN Member Posts: 24
    #8
    Hondo said:

    Joe / PK


    Thanks for the advice, I did do some Therapy but it was three years after my second radiation. My big problem was that Doctors where I live have never see anyone with NPC before, so they did not know what to really do for me at the time. But I look at the good side, I am still alive, and that's what counts the most.

    Jaw opening after treatment?
    Hi all,

    I am stage 4 NPC 5 year survivor. Just like most of NPC survivors I lost all my salivary glands and having problem opening jaw after treatment. Following are the low tech ways I have been using to exercise my jaw every day.
    1- With both hands holding the forehead use two thumbs to massage the jaw muscles about 2 to 5 minutes.
    2- Fastened together a dozen of Dr's tongue depressors into a bundle (the thickness of these sticks is about 1/16 to 1/8 of an inch, so depending on how wide you can open your jaw) bite it for one or two minutes everyday. Gradually increase number of the sticks in the bundle when you feel comfortable with. You can buy 100 tongue depressors online for about $3 or $4. Your Onc will be happy to give you these too.
    I hope these would help.

    Best wishes to all

    seeanN.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    seenanN said:

    Jaw opening after treatment?
    Hi all,

    I am stage 4 NPC 5 year survivor. Just like most of NPC survivors I lost all my salivary glands and having problem opening jaw after treatment. Following are the low tech ways I have been using to exercise my jaw every day.
    1- With both hands holding the forehead use two thumbs to massage the jaw muscles about 2 to 5 minutes.
    2- Fastened together a dozen of Dr's tongue depressors into a bundle (the thickness of these sticks is about 1/16 to 1/8 of an inch, so depending on how wide you can open your jaw) bite it for one or two minutes everyday. Gradually increase number of the sticks in the bundle when you feel comfortable with. You can buy 100 tongue depressors online for about $3 or $4. Your Onc will be happy to give you these too.
    I hope these would help.

    Best wishes to all

    seeanN.

    SeenanN

    Do you have any problems with the nerve in the jaw; if I try to force it just a little I get very bad pain in the jaw bone and under the tongue. I guess I will need to eat using a blender and straw soon. Life is still good
  • seenanN
    seenanN Member Posts: 24
    #10
    Hondo said:

    SeenanN

    Do you have any problems with the nerve in the jaw; if I try to force it just a little I get very bad pain in the jaw bone and under the tongue. I guess I will need to eat using a blender and straw soon. Life is still good

    Jaw opening after treatment?
    Hi Hondo,

    I only have problems with nerves round my neck and shoulders. Radiation damaged these nerves so I can only drive a short distance. For jaw opening, when I try to increase one more stick the nerves at at my forehead tense and pain a little. Since the bundle is tied with rubber bands, I can slide a stick haft way making it easier to bite. I bite only a minute then when the pain subside I will keep it longer. With this exercise and frequent jaw massages, my jaw is getting better (opening a little wider).
    I agree with you, life is good after beating this cancer beast and working around the treatment side effects.

    Best regards and God Bless
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    seenanN said:

    Jaw opening after treatment?
    Hi Hondo,

    I only have problems with nerves round my neck and shoulders. Radiation damaged these nerves so I can only drive a short distance. For jaw opening, when I try to increase one more stick the nerves at at my forehead tense and pain a little. Since the bundle is tied with rubber bands, I can slide a stick haft way making it easier to bite. I bite only a minute then when the pain subside I will keep it longer. With this exercise and frequent jaw massages, my jaw is getting better (opening a little wider).
    I agree with you, life is good after beating this cancer beast and working around the treatment side effects.

    Best regards and God Bless

    seenanN
    Thanks again for your help

    God bless you too
  • irish55
    irish55 Member Posts: 2
    #12
    I am using Dynasplint for
    I am using Dynasplint for trismus, but my opening is fairly good. I use 3x/day and it is covered my Medicare.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #13
    irish55 said:

    I am using Dynasplint for
    I am using Dynasplint for trismus, but my opening is fairly good. I use 3x/day and it is covered my Medicare.

    Irish55

    Can’t say I ever heard of it, can you give some more details or may-be a web page. I was using a thermobit but just had too much pain in the Jaw to continue using it. Someone said to try using infrared heat at the same time, so that might be my next step.

    Thanks
    Hondo
  • irish55
    irish55 Member Posts: 2
    #14
    Hondo said:

    Irish55

    Can’t say I ever heard of it, can you give some more details or may-be a web page. I was using a thermobit but just had too much pain in the Jaw to continue using it. Someone said to try using infrared heat at the same time, so that might be my next step.

    Thanks
    Hondo

    Here is a link to some info.
    Here is a link to some info. It is fairly new, but the rep comes to my home to check on me and change the tension when needed. I will probably use it for at least 4 months and then reevaluate. I started at 5 min 3x/day and increased a min or two a day, supposed to get up to 30 min 3x/day. I hope you are able to get some help and get some improvement.
    http://www.dynasplint.com/division/trismus.php

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