Post RAI Salivary Gland Pain

I have a dentist appointment this afternoon and I’m actually looking forward to it. I’m going to ask about my salivary gland pain, which I started having suddenly right around the time I got to Hawaii. This is a somewhat common problem in people who have been treated with radioactive iodine (RAI) because the RAI concentrates in the thyroid tissue and in the salivary glands. I have scarring in my salivary glands and my tear ducts, both of which were basically fried by radioactive saliva/tears during my treatment. Now whenever I eat or salivate, the saliva can’t get out of my glands and they get really swollen and painful. It’s mostly in the parotid glands, which are right under the ear on the sides of the jaw.
I never even knew we had salivary glands there until my RAI. They tell you to suck on sour candy while in treatment, so that radioactive saliva doesn’t just sit there festering in your glands, it moves and filters (that’s the idea anyway). Eating sour candy at 12, 2 and 4 in the morning was a bitch let me tell you.

I didn’t have pain while I was in the hospital, but shortly after getting home for my isolation, I lost my sense of taste and developed a very dry mouth and a little soreness. That went on for about 3 weeks, I guess and then cleared up. Almost a whole year went by without incident – my mouth was a little drier than before, but no pain or anything. Then I took a decongestant one day when I was having really bad allergies. Decongestants dry up all the fluids in your head, including in your salivary glands. Well, that triggered something because they started bothering me for about a week after that.

It cleared up and then a few weeks later, bam! All of a sudden my salivary glands started getting really swollen and painful every time I eat. It’s not as bad now as it was at first, but it’s STILL going on now about 10 weeks later. When I eat, they swell up like I have the mumps – like hard ping pong balls on either side of my face by my ears. The only thing you can do is just massage them and eventually they go down. It’s kinda gross because sometimes I get a squirt of the nasty backed up saliva, which tastes really salty/sour. Anyway, I’m going to ask the dentist about it and if there is anything I can do besides using my dry mouth stuff (Biotene) and massage. I know from my yahoo thyroid cancer group that some people do a course of steroids or get surgery to reopen the ducts… not sounding like fun. I just hope this is not something I have to live with forever, constantly! Dear lord, I hope I don't have to be retreated.....

Update: As of December 2011, I am officially cancer free!  And my parotid glands no longer bother me at all.  My friend who had thyca after me did NOT suck sour candies during her RAI and she did NOT have any issues with her salivary glands.  If I had to do it over, I would do the same.  But if you're reading this because your salivary glands are bothering you post RAI, take heart.  The problem is temporary and will eventually go away.  The things that helped me the most were Mucinex (not the one with sudafed in it) and massaging the glands when they bothered me.  And the dentists have no clue about this problem!  I've seen several and they all gave me blank stares when I asked about it.