Mouth Opening Shrinkage

wilpat
wilpat Member Posts: 8
in Head and Neck Cancer #1

Has anyone had their oral opening shrink? It is called microstomia and I have it! My mouth has shrunken to the point that I cannot get my upper denture in without tearing the side of my mouth and that is not fun!

I started after sometime during my radiation (30 rads in 6 weeks for tongue cancer). About a month after I had completed the radiation treatment they sent me to the denture Dentist. Note: I had my only remaining 4 teeth removed. The Dentist relined my upper and built a new lower denture. I needed the new lower because the 4 teeth had been the anchor for the lower denture.

None of the Doctors ( The ENT, the Radiology Doctor, neither of the 2 Dentists, my regular Doctor nor the Gastroenterologist) know what to do about the mouth shrinkage!

I periodocally force the denture in and try to eat, but the pain from the tearing of my mouth make very difficult to eat. I the simply revert to eating without my teeth.

 

Help Embarassed

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I had to look that up....

    .....I've heard of the mouth not opening because the jaws won't move (fibrosis of the muscles), but you are the first one I've heard of where the mouth itself, has actually shrunk.  Do the Drs. say anything about the fact that radiation may have caused this?  Anyway, what else I'm reading is that this might be fixed with surgery....have the Drs. said anything about that?

    Maybe give a plastic surgeon, or a cranial reconstruction surgeon a call.....see what they can do for you.  That's what I'd do. 

    p

  • Bart T
    Bart T Member Posts: 62 Member
    #3
    I'VE KNOWN IT AS TRISMUS

    I’m familiar with difficulty and a reduction in opening of the mouth, and have known the condition by the name of trismus. It is apparently a well known and common side effect of radiation to the mouth area. When I was undergoing radiation for treatment of tongue cancer, the doctors and nurses strongly encouraged me to do mouth exercises to keep it down to a minimum. The exercises were simple and only involved opening and closing the mouth and moving the jaw around.

    The doctors told me that once you have it, it is difficult to reverse it, and again stressed the importance of avoiding it. In fact, I was told that it can come on long after radiation, and I was encouraged to do my mouth exercises on an ongoing basis forever.

    I did have some reduction in my ability to open my mouth, but it opens enough for me to function normally. I am a bit over two years out from treatment. About the only difficulty I have is when I need dental work, my dentist has to work a little harder.

    If you put your fingers sideways, you should be able to get at least three fingers in between your front teeth. Since the early days of my radiation, I’ve been down to about 2 1/2 fingers. I’m not sure what my pre-radiation opening was (but I never had any trouble putting my foot in my mouth).

    During and shortly after radiation I did have some visits to a speech therapist and that was one of the issues she addressed. She gave me some exercises which essentially involved me spreading my mouth apart using tongue depressors.

    Frankly, if indeed your treatment team did not address this issue, I would think it was a severe oversight. I had my treatment at Sloan Kettering in New York City, and they were so attuned to the situation, that even prior to my treatment starting, they gave me a brochure detailing the condition and ways to avoid it.

     Perhaps you should seek out a medical professional, possibly a speech therapist who can help you regain some of your ability to open your mouth. I wish you the best. 

  • wilpat
    wilpat Member Posts: 8
    #4
    Bart T said:

    I'VE KNOWN IT AS TRISMUS

    I’m familiar with difficulty and a reduction in opening of the mouth, and have known the condition by the name of trismus. It is apparently a well known and common side effect of radiation to the mouth area. When I was undergoing radiation for treatment of tongue cancer, the doctors and nurses strongly encouraged me to do mouth exercises to keep it down to a minimum. The exercises were simple and only involved opening and closing the mouth and moving the jaw around.

    The doctors told me that once you have it, it is difficult to reverse it, and again stressed the importance of avoiding it. In fact, I was told that it can come on long after radiation, and I was encouraged to do my mouth exercises on an ongoing basis forever.

    I did have some reduction in my ability to open my mouth, but it opens enough for me to function normally. I am a bit over two years out from treatment. About the only difficulty I have is when I need dental work, my dentist has to work a little harder.

    If you put your fingers sideways, you should be able to get at least three fingers in between your front teeth. Since the early days of my radiation, I’ve been down to about 2 1/2 fingers. I’m not sure what my pre-radiation opening was (but I never had any trouble putting my foot in my mouth).

    During and shortly after radiation I did have some visits to a speech therapist and that was one of the issues she addressed. She gave me some exercises which essentially involved me spreading my mouth apart using tongue depressors.

    Frankly, if indeed your treatment team did not address this issue, I would think it was a severe oversight. I had my treatment at Sloan Kettering in New York City, and they were so attuned to the situation, that even prior to my treatment starting, they gave me a brochure detailing the condition and ways to avoid it.

     Perhaps you should seek out a medical professional, possibly a speech therapist who can help you regain some of your ability to open your mouth. I wish you the best. 

    Mine is not Trismus

    I can open my mouth as far as I could before the radiation. I did the excersizes as instructed by the Doctor (Dentist #1). My problem is the width of my mouth and the area around my lips. the circle of my mouth opening is what has shrunk. I saw the spech therapist and he had never heard of my problem and had ne recommendations.

    I will keep trying to find a Doctor who knows about it. 

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    wilpat said:

    Mine is not Trismus

    I can open my mouth as far as I could before the radiation. I did the excersizes as instructed by the Doctor (Dentist #1). My problem is the width of my mouth and the area around my lips. the circle of my mouth opening is what has shrunk. I saw the spech therapist and he had never heard of my problem and had ne recommendations.

    I will keep trying to find a Doctor who knows about it. 

    No offense intended

    But you need to not assume you've had the problem adequately explained to you yet.  And until that happens,  solutions are not likely to occur.  What you have certainly is't called microstomia.  Microstomia is a descriptive term, not a diagnostic term.  It literally means "small hole".  Unless you have some reason for severe scarring of the lips, there is no reason for this to occur without a commensurate decrease in actual muscular ability to open your mouth.  People who visit this site have had just about everything you can imagine happen to them.  If you'll give a more detailed description of what you have experienced, including time frame, actual measurements (for instance, what is the distance between your top and bottom central incisors?) what your treatments were and over what time frame, you will likely find you will find some who have had the same, or similar problem.

     

    best to you

     

     

    Pat

  • wilpat
    wilpat Member Posts: 8
    #6
    longtermsurvivor said:

    No offense intended

    But you need to not assume you've had the problem adequately explained to you yet.  And until that happens,  solutions are not likely to occur.  What you have certainly is't called microstomia.  Microstomia is a descriptive term, not a diagnostic term.  It literally means "small hole".  Unless you have some reason for severe scarring of the lips, there is no reason for this to occur without a commensurate decrease in actual muscular ability to open your mouth.  People who visit this site have had just about everything you can imagine happen to them.  If you'll give a more detailed description of what you have experienced, including time frame, actual measurements (for instance, what is the distance between your top and bottom central incisors?) what your treatments were and over what time frame, you will likely find you will find some who have had the same, or similar problem.

     

    best to you

     

     

    Pat

    No offense taken

    The definition of microstomia is as follows:

    microstomia

     [-stō′mē·ə]


    Etymology: Gk, mikros, small, stoma, mouth



    the condition of having an abnormally small mouth.


    Mosby's Medical Dictionary, 8th edition. © 2009, Elsevier.

     

    My 4 remaining teeth were removed and my lower jawbone was "ground" down

    I went through 30 rads is 6 weeks finishing 7/16/2014

    My mouth opening (upper gum to lower gum) had not changed since it was first measured before rediation.

    I went to get new lower dentures and relined upper dentures about 9/15/2014

    My new dentures were actually ready about 12.3.2014

    My oral opening was significantely reduced from when I had last worn my upper dentures (prior to 5/16/2014). They used to insert into my mouth just fine for 25+ years and now they will not insert without tearing the corners of my mouth. (Only the uppers are a problem).

     

    That is it. If you need more info to help, please advise.

     

    Thanks for the response to my inquiry.

     

    Wilpat (William Patrick) or just plain Bill
  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #7
    Mouth Shrinkage

    When my husband underwent radiation and chemo for laryngeal cancer, no one told us about him having trouble with opening his mouth to normal after radiation.  Well when we found out that the radiation and chemo didn't work and were referred to a head and neck specialist he told us that this can happen and does a lot.  When he went to scope him, my husband's front teeth ended up being chipped because he couldn't open his mouth wide enough and he did have a speech therapist that came to the house 3 days a week during radiation the first time to work with him.  She also worked with his in swallowing that didn't work either.   Now after a second round of radiation he can barely open his mouth.  No name has ever been given to this condition for my husband.  He has a feeding tube because the radiation and a second tumor at the cervical of his esophagus has closed off his esophagus.  Surgery was ruled out for this.

    My opinion is that doctors just don't know the full side effects of radiation and the fact that everyone responds differently doesn't help.  

    Wishing you the best -- Sharon

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