THIS TIME - I am asking for help again!

[stella5349]

I was trying to find the words on how to ask this of all of you. I didn't want to sound weak or anything like that - but .....

I need some help from our community,

I went to the UW hospitol Monday morning and got some answers I have been longing for - for about 6 yrs since this whole thyroid thing took hold of me.

As some know - I have had chronic swelling under my right jaw - whicjh I keep chalking up to a lymph node enlargement. I was on every antibiotic in the world I think and of course I had no infection.

I believe what was said yesterday has finally unlocked the swelling - yet it is permanent damage now.

After my RAI ablation for Graves - no one told me about the excessive flushing we are to do after that procedure. What happened (through the ultra sound I had yesterday) The iodine concentrated very heavily on my right side of the thyroid bed - it is no bigger than a piece of yarn on the scan and since I took in so much on that side my saliva gland on the right side was also scarred. Due to that scarring and now after 6 years later I know have something called Thyroid; radiation sialadenitis.

If you can - please read this link http://jada.ada.org/cgi/content/full/138/12/1582.

What I am looking to ask from all of you - is I need to see if I can at least find out how I can suppress the pain of this swelling gland/node.

I am begging for suggestions here and hope some can offer me suggestions on how I can stop this swelling.

Two years now - I have had this discomfort in my neck and it is starting to show on the outside with my appearance. See me photo and there is visuable evidence that I have this swelling on the right side of my neck.

The gland was measured to be about the size of a jumbo egg - maybe a tad longer - and that was on a "good" day. Sometime it is twice the size and it becomes most uncomfortable as it is today.

Again - any suggestions on how to keep this at bay for me would be great. Yet if anyone has a "solution" to RID it entirely - I'm up for that too :)

Thanks

[stella5349]

Thanks Dr Park

You bring up some very good things here. Your question - "Does the gland get bigger after you eat or especially after you eat something sour or acidic?"

I think so.. I never concentrated on when the swelling starts. I will follow my day today and see - I do know it is always swollen - in the morning - then depletes some as the day goes on - but then there are days it hangs around ALL DAY LONG.

[Steven Y Park, MD]

I just got your message. Based on what you've relayed so far, it does sound like a submandibular gland problem. The post-radiation sialadenitis is a good thought, but it could also be incidental. Lot of people have similar problems without any history of radiation. In the more common cases of external beam radiation, salivary gland atrophy (where it shrivels up and doesn't produce any saliva) is a common side effect. Localized radiation through radioactive iodine 131 can also cause problems, but as the article you cited mentions, it can happen, but is uncommon. Either way, you have a salivary gland problem that has to be dealt with. Either the ducts are scarred so saliva doesn't drain well, or you may have a stone.

Does the gland get bigger after you eat or especially after you eat something sour or acidic?

There are four basic conservative ways of treating these conditions: warm compresses, massage, lemon drops or sour candy, and drinking lots of water. It sounds like you've already tried some of them. Antibiotics will help only if you have a bacterial infection.

Surgery to remove this gland should take care of the problem, and it's a routine procedure that any head and neck surgeon can perform, but just with any surgery, there are always certain risks.

It would be interesting if you got a sialogram, where they inject contrast dye into your submandibular duct under your tongue and take an x-ray. This can tell if you have narrowed ducts or a stone in the main duct. There are people who also look with tiny little cameras inside the duct and can even remove small stones endoscopically. Ultrasounds shockwave therapy has also been used as well (like kidney stones). For ductal narrowing, definitive surgery is probably the best bet. The problem with these minimally invasive procedure is that there's always a small chance the problem will come back.

[Thypatient]

You have some serious things going on here.  Because there's a surgery planned you'll definitely want to ask or let the dr know on anything you take now.

[stella5349]

Thanks all

Will do some checking on the Phytolacca stuff. IS it an RX?

I just keep learning more new words with this whole situation   LOL

[898]

Phytolacca (poke root) may be prescribed for extremely swollen salivary glands, but the source does not specify if it can treat damage to salivary gland caused by radiation therapy.

[4helen]

I mentioned Sjogren's only because Graves is an autoimmune, and they are not sure what sparks off Sjogren's-------there is a hep C link and Epstein-Barr correlation so perhaps none is relevant but---

http://cro.sagepub.com/cgi/content/full/14/2/115---------this report mentions that sometimes the dry mouth is not apparant.

http://www.medscape.com/medline/abstract/1346409?src=emed_ckb_ref_0----------makes mention of 'lymphocytic' sialadenitis--but am not sure same thing as 'saliva gland' sialadenitis?

http://www3.interscience.wiley.com/journal/118654657/abstract?CRETRY=1&SRETRY=0
-----forgot why I copied over!!  : (--------memory loss 101 kickin' up!!!  


http://pt.wkhealth.com/pt/re/oooo/abstract.00043790-200307000-00014.htm;jsessionid=JQSRR0yVwj7NTvQvCJBDPDDxGLX0SBL2cm16rLQ7ZkC2vbX2r8Cy!136317464!181195628!8091!-1-------------this considers idea of a salivary neoplasm

: )

[stella5349]

Sjorgen's symptoms i think - are opposite of what I have. I think the big symptoms of that is dry mouth.

That is not an issue for me. At least not any longer. Just a swelling of that saliva gland.

[4helen]

Oh so hope it can help.  The web is over stuffed with technical info - it's just hit or miss finding the right needle or indeed being the right sized camel!! My fingers crossed you can get quick relief---but this complication is not at all discussed for the most part; wonder what is the percentage that it happens?   Before I saw this link -- was thinking about the lymphadema experience my sis (stage 3 breast w lots lymph nodes removed) has to manage her life around.....it involves compression bandages.  One other item I found in my quick and dirty to send you something ---'Sjorgen's' (an auto immune disorder) did come up within the seach. Not sure if any real connection to your symptoms, but might be worth a looksie.  : )

[stella5349]

I read both links and they are identical information.

Thanks

[stella5349]

4 helen

I just emailed the endo you information you gave me -

I will see what comes back

Thanks!

[stella5349]

I looked up your first link and that sounds pretty promising.

You know.......... I am now a bit concerned..

It read it is done for the use of thyroid cancer patients and this endo surgereon I saw has rave reviews on work.

Now why didn't she mention this is she is an expert on thyroid cancer. She had to of heard about it.. right?

[Barb135]

I've tried the ARNICA that CC9 mentioned and it works fairly well for some aches and pains, so might help.  I've also used capsaicin, but that's pepper and it makes me feel like I'm on fire so not sure how it would feel in that area.  I might suggest lavender oil since it is supposed to be calming or peppermint oil which is cooling, but they wouldn't do anything for inflammation - maybe just soothe it for a bit.

[laura1967]

Heh Stella....I would try some moist heat over the area, and maybe try some natural anti-inflammatory such as Tumeric, etc. If you stop at the health food store, ask them what blend of natural anti's they have. I like Ayurvedic combinations too!

[blksapphire]

Hello Stella.  
You have come to the right place.  Our home!
You do so much for us.

Ditto on that Happy Dance for you!!!!  I will do some research and see if I can find out any ideas/suggestions to help you.
I am in the link and do more searching.

BTW... I see my endo tomorrow because I have a "elephant leg" swelling on the right side of my neck.  Not a pretty site.

Keep us posted Stella and let me know what I can do to help.

Terri

[4helen]

http://www.ncbi.nlm.nih.gov/pubmed/16910918?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=3&log$=relatedarticles&logdbfrom=pubmed


http://pt.wkhealth.com/pt/re/ordi/abstract.00044299-200609000-00007.htm;jsessionid=J1TW1FBrDyKrtc8pFQLVJ1v0hLNr1wG3GxBd1TnPD1HzYzhf0sWg!136317464!181195628!8091!-1

Hiya S---Sorry to hear of this complication----don't know if these links will help but they mention a procedure of 'sialoendoscopy' which sounded plausible.  : )

[MKlacza]

Just googling some info on this disorder for ya...

http://www.kfkronenberg.com/Sialadenitis-Eng.pdf

[KD9ER]

Stella--

Happy Dancing too!  I'm glad you finally have a diagnosis.  Sad that there seems to be no relief.  I'll do some research for you to see what I can come up with.  Have you tried C's suggestion with that cream?  Capsasin would be another along that line which may provide some relief.  It works for my achy joints when my Hypo is going nuts.  ***hugs***  

I'll let you know what I find.  :)  Right now I'm off to sleep (maybe...I'll be trying really hard) as I need to be up in less than 5 hours.  Wee...  :)  "I love this crazy, tragic, sometimes almost magic, awful, beautful (^insert Thyroid) life!"

-K

[mommy2two2008]

Stella - I know Totie had her submandibular (also called submental) gland removed not too terribly long ago... are they not saying its an option?

Too strange that you have this going on.... I have been having the same symptoms (swelling of other glands apart from the thyroid: submandibular, neck node, and parotid/ear) for the last year, w/o RAI.  I feel for you dear, I know its he//!

In fact, I am on my 4th round of antibiotics in the last 10-11 months for the same problem.

[stella5349]

PT  = Taking one lobe ( left side) of the thyroid - which is hardly anything due to the ablation 6 yrs ago - but because of the nodule - it's in a bad place and really pressing on my Jugular and Cartoid Artery in addition to pressing on the back of my esphogus.

WOW - lots of new words for me to spell..... haha

[kitty9309]

What is a PT?

[ChitChatNine]

I think Kitty is referring to the line in your orig post that says "surgery on Tues" ...  I think you mean pre-op tests maybe?

C~

[stella5349]

I am having a PT done - this is not related to the saliva situation.

I will have to - I suppose - live with it and I am looking for comfort things I can do to decrease the swelling of the gland.

Today is really is uncomfortable - due to the palpation from yesterday.

[kitty9309]

Stella-

I am glad you know what this is now. Two questions to clarify:

1. Are you having surgery to remove/fix it in February?

2. Did you ask the doctor what you can do for the pain and discomfort until then?

~Kitty

[ChitChatNine]

Here is the link to the article in Health Pages.. you may have included the "period/dot" when you copied the link.

http://www.medhelp.org/health_pages/Thyroid-Disorders/Radiation-Sialadenitis-Thyroid/show/622?cid=62

C~