# Chronic swelling and inflammation in Parotid glands possibly due to RAI



## bluemoonguy

Hey folks,

It's been awhile since I've posted here. I hope everyone's been doing well and is, hopefully, better off than me these days! 

So, I wanted to get your feedback on a new issue that has developed over the past two months: swollen parotid (salivary) glands. And...I'm pretty sure this issue is related to my first and only RAI treatment back in March 2012.

One day I woke up and noticed some discomfort in my cheeks. It was just ever so slightly tender. I thought...okay, I'm probably just getting sick. No big deal. Well, weeks go by and I never get a cold. The discomfort had spread to my right parotid gland first. I remember I was on a road trip to see my uncle when my first big-time flare up happened. At the time, this was all new to me, so I was somewhat freaking out.

After stopping at a gas station and grabbing a snack, my gland swelled up to a size I'd never seen before, all because I had a snack. The snack drew out the saliva from my parotid glands and, man, was it painful!

To cut this story down shorter, this same thing has been going on for 2 months now and I've noticed somewhat of a pattern. Below is the general procedure I go through on a daily basis:


Wake up.
Check for tenderness in both Parotid glands.
If there is pain (and pretty horrible pain to the touch), I conclude that I WILL have a flare up during my first meal of the day and that there's no way around it.
I pop 3 Advil to help reduce pain and swelling. This helps with the pain a bit but does nothing to combat any future swelling.
Eat a meal. This leads to moments of extreme pain at first when the Parotid glands are stimulated and saliva is drawn out into my mouth. The Parotid gland enlarges quite a bit and almost feels a bit hard to the touch.
Let the Parotid gland calm down and return to its normal size/close to its normal size.
Taste salt. I don't mean grabbing a jar of salt and chugging it down. Usually by about 4-6pm, my previously swollen Parotid gland relaxes and secretes a salty discharge.
Massage the glands to help secrete as much of the salty goo coming out from my glands. I'm not sure if this step helps much, but it's almost fun (?) to force this salty taste in my mouth. It's very odd.
Rinse and repeat the next day, if necessary.

This doesn't occur every day, but it sure feels like it. The past week in particular has been pretty bad. I've had a flare up twice in the past three days in the same left cheek. Oh, and usually only one of my Parotid glands swell/act up. It's never both at the same time.

Anyway, I've been to a general practitioner, urgent care facility and ENT. I've been prescribed two different types of antibiotics that have had no positive effect on my glands. I've even had an MRI done that basically didn't reveal anything related to my glands other than I may have sialadenitis. There were no signs of tumors or salivary stones.

I'm very frustrated at this point because I'm not sure how to treat this. My next step is to use a heating pad during flare ups, but this is not a long-term fix. I definitely do NOT want surgery to remove my Parotid glands if I can avoid it. I may go get a second opinion from another ENT or facial pain specialist of some sort, but I'm not sure where to go from here. I don't want to waste more money on doctor's visits and tests, but I feel I almost have no choice. Also, I've read up on this elsewhere on the internet and I'm VERY nervous about one possibility: if I let this go too long without treatment, I could very well risk permanent damage to my salivary glands. Which, at that point, could mean that I'd need surgery to remove my glands regardless.

What I guess I'm asking is...have any of you experienced this before? What did you do to treat the symptoms? Did you have to go see a bunch of different doctors before coming to a solution? Any help and information would be greatly, greatly appreciated!

Oh, and in case you wanted to see my cheek, here you go:








Sorry it's a bit blurry. Had to take the picture myself!


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## Andros

bluemoonguy said:


> Hey folks,
> 
> It's been awhile since I've posted here. I hope everyone's been doing well and is, hopefully, better off than me these days!
> 
> So, I wanted to get your feedback on a new issue that has developed over the past two months: swollen parotid (salivary) glands. And...I'm pretty sure this issue is related to my first and only RAI treatment back in March 2012.
> 
> One day I woke up and noticed some discomfort in my cheeks. It was just ever so slightly tender. I thought...okay, I'm probably just getting sick. No big deal. Well, weeks go by and I never get a cold. The discomfort had spread to my right parotid gland first. I remember I was on a road trip to see my uncle when my first big-time flare up happened. At the time, this was all new to me, so I was somewhat freaking out.
> 
> After stopping at a gas station and grabbing a snack, my gland swelled up to a size I'd never seen before, all because I had a snack. The snack drew out the saliva from my parotid glands and, man, was it painful!
> 
> To cut this story down shorter, this same thing has been going on for 2 months now and I've noticed somewhat of a pattern. Below is the general procedure I go through on a daily basis:
> 
> 
> Wake up.
> Check for tenderness in both Parotid glands.
> If there is pain (and pretty horrible pain to the touch), I conclude that I WILL have a flare up during my first meal of the day and that there's no way around it.
> I pop 3 Advil to help reduce pain and swelling. This helps with the pain a bit but does nothing to combat any future swelling.
> Eat a meal. This leads to moments of extreme pain at first when the Parotid glands are stimulated and saliva is drawn out into my mouth. The Parotid gland enlarges quite a bit and almost feels a bit hard to the touch.
> Let the Parotid gland calm down and return to its normal size/close to its normal size.
> Taste salt. I don't mean grabbing a jar of salt and chugging it down. Usually by about 4-6pm, my previously swollen Parotid gland relaxes and secretes a salty discharge.
> Massage the glands to help secrete as much of the salty goo coming out from my glands. I'm not sure if this step helps much, but it's almost fun (?) to force this salty taste in my mouth. It's very odd.
> Rinse and repeat the next day, if necessary.
> 
> This doesn't occur every day, but it sure feels like it. The past week in particular has been pretty bad. I've had a flare up twice in the past three days in the same left cheek. Oh, and usually only one of my Parotid glands swell/act up. It's never both at the same time.
> 
> Anyway, I've been to a general practitioner, urgent care facility and ENT. I've been prescribed two different types of antibiotics that have had no positive effect on my glands. I've even had an MRI done that basically didn't reveal anything related to my glands other than I may have sialadenitis. There were no signs of tumors or salivary stones.
> 
> I'm very frustrated at this point because I'm not sure how to treat this. My next step is to use a heating pad during flare ups, but this is not a long-term fix. I definitely do NOT want surgery to remove my Parotid glands if I can avoid it. I may go get a second opinion from another ENT or facial pain specialist of some sort, but I'm not sure where to go from here. I don't want to waste more money on doctor's visits and tests, but I feel I almost have no choice. Also, I've read up on this elsewhere on the internet and I'm VERY nervous about one possibility: if I let this go too long without treatment, I could very well risk permanent damage to my salivary glands. Which, at that point, could mean that I'd need surgery to remove my glands regardless.
> 
> What I guess I'm asking is...have any of you experienced this before? What did you do to treat the symptoms? Did you have to go see a bunch of different doctors before coming to a solution? Any help and information would be greatly, greatly appreciated!
> 
> Oh, and in case you wanted to see my cheek, here you go:
> 
> 
> 
> 
> 
> 
> 
> 
> Sorry it's a bit blurry. Had to take the picture myself!


Oh, my gosh!! It is my recommendation that you see an oral surgeon as you may have salivary gland stones. They will have to be removed to unblock the salivary ducts.

I "feel" for you as I have know of others who have had this and who would think such a thing possible but is sure is.

http://www.patient.co.uk/health/Salivary-Gland-Stones.htm


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## llhg71

My cheeks started doing that about 7 months after my I-131 treatment. I went to the ENT. She prescribed me an antibiotic. She said to drink lots of water and massage them to keep them draining. So I would gently rub them starting at my ear and work towards my mouth. Nasty tasting stuff would drain. After a month or so of this, it quit swelling.


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## bluemoonguy

Yeah, this kinda sucks. I mean, I've been on two different antibiotics (2x 7 day doses) and neither helped. I've also been checked for salivary stones...nothing (even had an MRI done that didn't reveal anything significant. Though they DID find an arachnoid cyst in my head. Luckily, no sign of a brain tumor. THANK GOD).

Anyway, I may just give it more time. It sounds like there's really no cure for Sialadentitis, unless you have trapped salivary stones. Then you at least have something to remove that can alleviate the pain and swelling.

I guess I'm just concerned that it's been going on for 2 months+ now and there are no signs of it going away. I can't remember the dosage, but I remember being told that my radiation dosage was pretty high. I'm assuming that's the reason why this is happening.

I'll keep you posted on any changes I experience, mainly for those who experience this years down the road and are searching for answers like me. In the mean time, if any of the rest of you have experienced this and can share your stories, I'd love to hear them. Anything I can do to correct this (outside of surgery) would be awesome.


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## Andros

bluemoonguy said:


> Yeah, this kinda sucks. I mean, I've been on two different antibiotics (2x 7 day doses) and neither helped. I've also been checked for salivary stones...nothing (even had an MRI done that didn't reveal anything significant. Though they DID find an arachnoid cyst in my head. Luckily, no sign of a brain tumor. THANK GOD).
> 
> Anyway, I may just give it more time. It sounds like there's really no cure for Sialadentitis, unless you have trapped salivary stones. Then you at least have something to remove that can alleviate the pain and swelling.
> 
> I guess I'm just concerned that it's been going on for 2 months+ now and there are no signs of it going away. I can't remember the dosage, but I remember being told that my radiation dosage was pretty high. I'm assuming that's the reason why this is happening.
> 
> I'll keep you posted on any changes I experience, mainly for those who experience this years down the road and are searching for answers like me. In the mean time, if any of the rest of you have experienced this and can share your stories, I'd love to hear them. Anything I can do to correct this (outside of surgery) would be awesome.


Think lemons as in lemon drops. Keep that saliva responding.

What a mess.


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## jenny v

A lady I work with had RAI last year after having a TT to remove her cancerous thyroid and she had the same problems you're having, although she just had it happen once. Her doc didn't find any salivary stones either but told her to constantly suck on lemon drops and apply hot compresses to the area as much as possible. The doc made it sound like things got "gummy" in her glands and backed everything up, much like a stone would.


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## bluemoonguy

Hey folks. Sorry for digging up an old thread, but I always hate checking back with forum threads online only to find that the original poster never followed up on how he/she was doing! So, time for me to report in.

The swelling has all but disappeared; however, not before (briefly) spreading to the submandibular glands for a short while -- maybe a few weeks. While the extreme flare-ups are no longer an issue in any of my glands, I still have residual discomfort in what I can guess are my salivary ducts. Often when I smile or jerk my cheeks back/flex my mouth muscles, I feel a very dull pain or discomfort. With my left side, I can often relieve this by clenching my jaw, taking my fingers and pressing down starting from just below my ear, and swipe them down to the left crease of my mouth. More often than not, I get a slightly salty taste in my mouth as a result. The discomfort immediately dissipates for awhile, then often comes back at random times.

My right side, however, often refuses to be so cooperative. I usually don't even mess with it because often times, the push and squeeze method doesn't work on that side.

Anyway, it's a slight annoyance, but I'm learning to live with it. An ENT I saw had me get an MRI. Everything basically came back 'normal' with slight signs of sialadenitis, but overall he said things looked just fine (this was when the parotid glands were still flaring up, too). The only real options he offered were 1) continue monitoring them and 2) removing the glands. Yeah, I went ahead and stuck with option 1! Glad I did.

Also, in an attempt to see how my body would react, I decided to change my diet and get on a couch-to-5k plan, basically. Since the holidays, I've dropped a good 30+ pounds (245 lbs to 213 lbs and counting, 5'10" male). Some of the weird symptoms I've been experiencing haven't really gone away. Actually, a new weird symptom popped up: I have moderate pain to the touch on one of my vertebrae. I need to get that checked out if it doesn't go away. Honestly, this new discomfort could be related to poor posture when sitting. That reminds me, I'm also overdue for a full body scan! Anyway, I'm still glad I dropped the weight. If nothing else, I wanted to prove to myself that it CAN be done, even without a thyroid. So if you're worried about dropping weight after a total thyroidectomy, don't be. It'll take some work to get your medicine adjusted, change your diet (if you need to), and get into a good and steady workout routine. But, I'm living proof that it can be done!

One last thing...during my parotid MRI, they discovered an arachnoid cyst surrounding my brain. Yay! Thankfully, so they say, it doesn't interrupt any brain function and isn't associated with brain cancer. Still...it worries the hell out of me sometimes.

Sorry for my long-winded post! I just wanted to keep you guys (and future readers) abreast of what's going on. Thanks for all of your support, folks! I hope you are all doing well with all of the issues you're dealing with on your own. Keep your chins up!

Now to update my signature with all my new/recent thyroid readings.


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## Lumpy

Holy cow. Been off the boards for a while but Google now brings me back.

Sigh.

I am going through the exact same thing. I'm finishing up my first round of antibiotics which do seem to have helped a little. I'm having trouble keeping the gland discharging. I see the ENT tomorrow.

Awaiting lymph node biopsy results from last week's follow up with the endo.


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## vesmith

Hi BlueMoonGuy,

I have been looking for more information regarding my swollen right Parotid gland and ran across your post. I would like to learn more about your experiences as there are several similarities to my situation... My swollen gland appears very similar to pictures you shared and I was recently diagnosed with a thyroid nodule that we are in the midst of testing to learn more about it.


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