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Swollen Chipmunk Jaw! Help, I need advice!!

Redneckimber's picture
Redneckimber
Posts: 23
Joined: Dec 2009

In November 2009 I had a Total Thyroidectomy for Papillary Carcinoma; in December 2009 I had the RAI, 150mcgs. That day and the next from the RAI both of my glands swelled up and I looked like a chipmunk, very painful, went away after a few days.

Yesterday May 16, 2010 (5month later) I woke up with pain in my right jaw, cheek area.
Today I woke up and it was swollen. It is swollen just like it was back in December when I had the RAI treatment. It feels exactly the same, just one side this time.

So, I call my Dr. my Endocrinologist that is supposed to take care of these types of things and her nurse calls me back and tells me the doctor says I need to follow-up with my Primary Care Physician or my Dentist!

Hello! What is that? I thought my endocrinologist should take care of this, what should I do. I don’t feel like I should call my dentist or my primary care Dr and have to go thru more scans and ultrasounds for what?

Shouldn’t my endo dr. take care of this? What is happening? Should I find another Dr?

I'm worried! Thanks everyone!

Kimber

lynn2318
Posts: 41
Joined: Jan 2010

Hi, I haven't been on the blog in a long time but clicked on yours first. I had the same problem. My first RAI treatment was in July 2008 and I still get soreness in my jaws and neck sometimes. It is really bad if I eat anyting sour! I get knots in my jaw and they really hurt. My endo., and internist didn't really help me either. I discovered I just can't eat sour stuff or food that requires a lot of chewing. Good luck, and sorry you are having this issue on top of everything else you have had to deal with.

jecklehyde
Posts: 33
Joined: Nov 2007

It is very common for your salivary glands to swell around six months after RAI. Could be one or both sides. You need to massage the side of your jaw in a circular motion and you might even feel a pop and a sour taste in your mouth. This would be a good thing to help clear it out.
Good Luck!

butterfly123
Posts: 52
Joined: Feb 2010

It's somewhat common. I had similar experience. Take advil and warm compress for the swelling. Also, eventhough it may hurt, massage the parotid gland from the ear area forward. hope you feel better soon!

Redneckimber's picture
Redneckimber
Posts: 23
Joined: Dec 2009

Thank you sooo much! I was a little surprised that my Endo didnt really care, but I guess I was expecting to much! Once I started googling my problem, wow did I find out it is a huge thing with lots of people. So thanks for the info, Advil definately helps. I am doing the massaging and I will be doing the warm compresses as well. Thanks again.

Also, is this an ongoing thing for you guys or has it only happened a few times?

jecklehyde
Posts: 33
Joined: Nov 2007

It usually only happens around 6 months after RAI and then it does go away. It might last a few weeks. Glad you are feeling better

ssru92
Posts: 1
Joined: May 2010

this is called sialoadenitis, the radiation oncologist who gave the radioactive iodine may have info in the endocrinologist did not, there is more info on MD ANDERSON or NCI web sites
--my mds told me in addition to gentle salivary gland message, that is is a low flow problem in a scared salivary duct and important to not get dehydrated, it can come back for no apparent reason. good luck.

rzemach's picture
rzemach
Posts: 33
Joined: Oct 2009

Hi
My jaws starting hurting very badly in June - the RAI was in February. Right now I am in so much pain that I just live on Advil and other pain killers. It simply hurts to eat. I did the massage but I feel like I am massaging rocks. In addtion, I have almost no saliva in my mouth.

Do you know how long it takes for this to dissapear??

thanks!!

Robin

1020lisab
Posts: 1
Joined: Sep 2010

Hello Kimber,
I know exactly what you are going through. I had RAI 131 in June of 2009. I was told to suck on sour candy right after the treatment to keep the salivary glands active. I did this but to no avail, I woke up 6 months later with a very swollen right cheek. The radio active iodine uptakes to the salivary glands and can damage them permanently, you can even develop a blockage similar to a kidney stone, only its blocking the flow of saliva. My mouth is very dry and I have lymph nodes that get inflamed every now and then. Unfortunately it is one of the wonderful (NOT) side effects that come along with the RAI 131 treatment. I recently had a flare up with 3 very large lymph nodes and pain in my jaw and did go to see my dentist who used a dental tool to stick into the gland opening. I am not positive that did anything but it seems after that along with taking motrin and massaging the glands often I did get relief. I have also been massaging my salivary gland inside my mouth with my electric toothbrush!! I really have gotten a lot of relief from the pain and swelling by doing this each time I brush. I hope this is helpful.

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