by MrsCK on Thu Apr 05, 2012 07:58 AM
my hubby is 8 monts post RAI and since yesterday complains about pain just below his jaw line where the salvary glands are. I can even see some swelling. He also experience pain when he swallows.
Could this be related to the RAI he had 8 months ago?
by tink2002 on Thu Apr 05, 2012 12:52 PM
hello. No matter what the doctors tell us, there are many people on this board who experienced this at about this time frame. I found relief by 1. warm compresses along the line from the ear to the jaw. 2. gargalling with warm salt water to hopefully "open" up the duct inside the mouth. 3. eating SMALL amounts of very acidic things (a quick suck of a lemon wedge) once it felt comfortable. At first, this caused terrible pain, so go gently. 4. "milking" the gland: after the warm compress, gently rub from under the ear into the cheek. He will know the place to start because that's where it hurts. Again, in the beginning this was VERY painful and should be done very gently. 5. Also used a clean finger to run down that gland from the inside of the mouth. Again, he'll know where because of the pain. I noticed that i would get a salty/meltic taste when I was able to get the gland to express some of the build up. If ok for him, some ibuprofen my help some of the pain. Good luck, and please keep us posted.
by Toots12 on Thu Apr 05, 2012 01:02 PM
I too have tenderness in the salivary glands. Mine started about a month ago and I'm15 monthspost RAI. I thought I got away without it, but no such luck.
Also still have severe tenderness on one side and "tingling" almost numbness on the other side of my neck.
Oh well. Just something more to get used to.
by dinparadise on Thu Apr 05, 2012 05:29 PM
On Apr 05, 2012 7:58 AM MrsCK wrote: my hubby is 8 monts post RAI and since yesterday complains about pain just below his jaw line where the salvary glands are. I can even see some swelling. He also experience pain when he swallows.
Could this be related to the RAI he had 8 months ago?
On Apr 05, 2012 7:58 AM MrsCK wrote:
Everything Tink said. I had it 6 months post RAI. It lasted for 6 months. it took me two doctors before I found the one who admitted it was RAI. He educated me on why and how? One doctor diagnosed me with TMJ; that's what most of us are diagnosed with. The other ENT came up with a whole new "disease"! I did what Tink did and it helped me tolerate the pain. It just went away with time..........
by jeffspeiser on Fri Apr 06, 2012 03:43 PM
Must be contageous. I had my RAI treatment about a year ago and my salivary glands started bothering me 5 weeks ago. Went to the dentist and they sent me to an oral surgeon who said there was nothing wrong with my jaw. Going to an ENT specialist in two weeks.
At first the pain was terrible. Gargled with salt water, hot compresses, and ibuprofrin help. The bitter/metallic taste in the mouth is nasty.
I realized it was salivary when I noticed that it only hurt when I ate. I can talk or bite on a stick without any issues, but if I eat (and my mouth produces more saliva) the pain gets much worse. Found an article online, printed it out for my GP and they agreed that that is probably the issue.
I did read somewhere that taking Mucinex (plain, not D or DM) can help thin the secretions. Going to get some today and see if it helps. Also, stay away from decongestants as they can dry you out which can cause more swelling.
Spoke to my oral surgeon yesterday who now wants to do a case study on my to publish in a dental journal to let other dentists know about the issue. Hopefully that will help diagnose this correctly.
Out of curiousity, did any of you suck on candies those first few days? They say it's supposed to help get the radiation out of your glands. I was sucking on lemon drops constantly, but I guess not enough.
Good luck all.
by sbausman on Fri Apr 06, 2012 06:29 PM
I've had this metal mouth right after RAI, which was almost 11 months ago and periodically through the year. But for some reason these past 3 months have been horrible with the metalic taste. Oddly enough my metal mouth is better when I have my menstrual cycle. Odd I know...I don't know what else to consider to be the cause. AND I don't really have pain. Although I must say, my mouth seems more tender, if that makes sense.
During RAI I sucked on lemon drops and root beer candies—which to this day I can't stomach either—blech! Apparently it hasn't helped.
I guess we aren't alone with this. I'm going to try what everyone suggested!
Thanks for posting!!
by dinparadise on Sun Apr 08, 2012 10:47 PM
Yes, I was religious about constantly sucking on lemon drops. I did it for months, and when I get a dry mouth I still do it 4 years later. My good ENT explained it as the RAI being absorbed, it ablates the remaining good and bad thyroid cells and creates a scar tissue effect that also affects the salivary glands and parotid gland. We all have it and most doctors ignore what we go through. When it happened to me, two doctors try to give me "new diseases". I immediately posted on this board. Within an hour I had about 20+ responses. I realized it's just another symptom that doctors ignore. Because thyca is considered the "good cancer", many doctors don't give us the attention they would other cancer patients. Very unfortunate I know. But that's why many of us have been on this board for years. Thankfully there were people here to hold our hands and so we do a bit of a pay back.
Someone asked about the tenderness and numbness/tingling on the side of their neck....I've had that ever since my first neck dissection; I've had two. They cut through nerves, sometimes muscles, to remove affected lymph nodes. The nerves grow back but have been damaged in the process. Even if they just spread the muscles, there is often times permanent damage done to them also. My surgeon, during my second neck dissection, went in and removed as much scar tissue from the previous operations as possible. I couldn't stop thanking him. I was almost glad I had the third surgery. Removing the scar tissue helped unbelievably!!! But I live with it everyday. It's actually gotten better, but it will never be perfect again. Just something you get used to over time.
by jeffspeiser on Tue Apr 10, 2012 01:33 AM
For those who have had the salivary pain - did it eventually go away? If so, how long did it take? If not, how long have you had it. Just trying to figure out if it's something that's permanent or not. Thanks all.
by tink2002 on Tue Apr 10, 2012 02:51 AM
When I originally had the issue, the very first time it lasted about 6-8 weeks, but it was only really uncomfortable for a week or two. Eating was very painful. It gradually improved after that. It comes back every so often. my RAI was May 2008, and my last scan was September 2010. It comes back for a bit after each scan and for some reason it has been bothering me now. It has never been as bad as the first time. I suspect that is because I catch it right away and start taking care of it a.s.a.p. On another post someone mentioned that they thought taking Claritin might make the saliva too thick to flow easily through the glands and that might start it up. I have been taking claritin, so today I switched to mucinex (supposedly, it thins out secretions, so I want to see if the swelling and discomfort ease up). best to all ;)
by dinparadise on Tue Apr 10, 2012 09:36 PM
On Apr 10, 2012 1:33 AM jeffspeiser wrote: For those who have had the salivary pain - did it eventually go away? If so, how long did it take? If not, how long have you had it. Just trying to figure out if it's something that's permanent or not. Thanks all.
On Apr 10, 2012 1:33 AM jeffspeiser wrote:
I got it only after my first round. It lasted 6 months and was pretty intense for months. For whatever reason I did not get it the second time and haven't had it since. So you can see it's different for everyone. I had my first round at the same time as Tink; May 2008. I've never heard of anyone having it permanently but it does reoccur for some.
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