Bad swelling in jaw, can't open mouth or close teeth together, so swollen.

lacey_blair
lacey_blair Member Posts: 5
edited March 2014 in Thyroid Cancer #1
I've gone through the whole process, RAI, 9 month follow up thyrogen injections, etc. I had the RAI in July, and started getting painful swollen parotid glands in December. It seems like a ways off for that to be a side effect of the RAI, but maybe?

The weird thing is that it will come and go for weeks at a time. This last time I had it, I couldn't close my teeth together, and it got bad enough to where I couldn't even open my mouth big enough for a finger to fit in..or close it for that matter.

Does this sound normal for anyone going through this?? I can understand swollen salivary glands, but this seems worse.

Comments

  • IowaBo
    IowaBo Member Posts: 32
    #2
    Hi,
    I had my RAI in March
    Hi,
    I had my RAI in March and had bad jaw pain with it then, lemon drops helped. Since then I have had one reoccurrence, after it happened I had a red streak go across my face from the corner of my mouth out. It's gone now and no more pain so far. Have you asked a doctor about it?
  • lacey_blair
    lacey_blair Member Posts: 5
    #3
    IowaBo said:

    Hi,
    I had my RAI in March
    Hi,
    I had my RAI in March and had bad jaw pain with it then, lemon drops helped. Since then I have had one reoccurrence, after it happened I had a red streak go across my face from the corner of my mouth out. It's gone now and no more pain so far. Have you asked a doctor about it?

    Doctors dont know what it could be
    I went to my ENT twice, they did a CT back in December that didn't show anything. The pain went away, but it was still swollen, then came back in full force this past 2 months. I went back to the ENT, and just got an MRI done. The MRI will show more than the CT can, Hoping for some kind of answer. At this point, lemon drops do not help, just added sugar that is unhelpful. I will update when I get the MRI results back in a few days...
  • ldready
    ldready Member Posts: 5
    #4
    lacey_blair said:

    Doctors dont know what it could be
    I went to my ENT twice, they did a CT back in December that didn't show anything. The pain went away, but it was still swollen, then came back in full force this past 2 months. I went back to the ENT, and just got an MRI done. The MRI will show more than the CT can, Hoping for some kind of answer. At this point, lemon drops do not help, just added sugar that is unhelpful. I will update when I get the MRI results back in a few days...

    very similar problems
    I had my RAI in July 09 and did the whole sour stuff like they said. didn't have a problem at that time, but then around December it started on one side of my face and then just seemed to move. first the glands around the right side of my jaw swelled up so big i looked like a chipmonk or something and it was so painful, then that calmed down a little bit and then it hit the left side, so for awhile i could barely eat anything. then it hit the salivary gland under my jaw only on the right side. this went on for about a month. they ran lots of test, sent me to a ENT also, nothing came back. I went to my endo for a check up and mentioned it and he said it could definitely be from the RAI even tho it was how many months ago. Just last week it decided to hit the left gland under my jaw, and i altho the other ones havent gotten huge again they still hurt and im so much more sensitive to certain food, especially things with vinegar... so i'm definitely interested to here if anything comes back on that MRI, my ENT only ran test. no CT or MRI. hope things get better for you
  • ldready
    ldready Member Posts: 5
    #5
    lacey_blair said:

    Doctors dont know what it could be
    I went to my ENT twice, they did a CT back in December that didn't show anything. The pain went away, but it was still swollen, then came back in full force this past 2 months. I went back to the ENT, and just got an MRI done. The MRI will show more than the CT can, Hoping for some kind of answer. At this point, lemon drops do not help, just added sugar that is unhelpful. I will update when I get the MRI results back in a few days...

    oh..did you talk to your
    oh..did you talk to your endo at all?
  • lacey_blair
    lacey_blair Member Posts: 5
    #6
    ldready said:

    oh..did you talk to your
    oh..did you talk to your endo at all?

    Just Stones...
    So, i got the MRI back, and no masses or tumors. They really couldn't see anything, so it is most likely just stones that are lodged in there. They just have to work themselves out eventually. My doctor said that some people are just more prone to getting them than others. I can live with stones, the alternative is to have your parotid gland removed which causes more problems than it's worth in my opinion.
  • nasher
    nasher Member Posts: 505 Member
    #7
    lacey_blair said:

    Just Stones...
    So, i got the MRI back, and no masses or tumors. They really couldn't see anything, so it is most likely just stones that are lodged in there. They just have to work themselves out eventually. My doctor said that some people are just more prone to getting them than others. I can live with stones, the alternative is to have your parotid gland removed which causes more problems than it's worth in my opinion.

    how many parathyroid affected
    well my first question is how many of your parathyroids are affected.

    normally you have 4 of them. If you are having problems with just one of them it might be an option to have it removed.

    myself when they did the 2 surgeries for my thyroid removal each time they had to remove one of the parathyroids do to the fact they were actually surrounded completely with thyroid tissue.

    so i am living fine with just 2 parathyroids myself the only issue right now is i need to take calcium supplements.

    if you are having problems i do recommend talking with endocrinology as well they know alot more about this stuff being its there specialty.

    Emergency room doctors are just that there goal is to make sure your stable and wont die and have time to schedule normal dr's appointments. so... once they do there tests and release you its time to schedule a normal or specialists appointment to make sure what they came up with made sense and that the doctors who know your medical history will sort out if you really need things. but definitely if your havering problems you need to talk with endocrinology and make sure they know as well... there may be a simple solution
  • jecklehyde
    jecklehyde Member Posts: 33
    #8
    nasher said:

    how many parathyroid affected
    well my first question is how many of your parathyroids are affected.

    normally you have 4 of them. If you are having problems with just one of them it might be an option to have it removed.

    myself when they did the 2 surgeries for my thyroid removal each time they had to remove one of the parathyroids do to the fact they were actually surrounded completely with thyroid tissue.

    so i am living fine with just 2 parathyroids myself the only issue right now is i need to take calcium supplements.

    if you are having problems i do recommend talking with endocrinology as well they know alot more about this stuff being its there specialty.

    Emergency room doctors are just that there goal is to make sure your stable and wont die and have time to schedule normal dr's appointments. so... once they do there tests and release you its time to schedule a normal or specialists appointment to make sure what they came up with made sense and that the doctors who know your medical history will sort out if you really need things. but definitely if your havering problems you need to talk with endocrinology and make sure they know as well... there may be a simple solution

    VERY COMMON
    It is very common for your salivary glands to swell, usually around 6 months after RAI. You need to massage your jaw by taking your fingertips from you ears forward into a circular motion. It hurts while you are doing it, but many times you will get a pop (almost like a pimple pops) which will relieve the pain. My dental hygenist also did it for me which helped greatly. It will go away, but by helping it along, you will feel better faster.

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