Not sure what to do/think about swollen face

I don't know if some of you remember, but I had an 'acute parotid gland swelling' about 6 weeks ago.  The 'urgent care' place referred me to the ENT guy that did absolutely nothing except to say "these things resolve on their own".  I also had the large Aphthous ulcer/canker sore that had begun in August that was the size of a pencil eraser that he also said would ‘resolve on its own’.   That’s still here too.

Anyway, this parotid thing has never fully resolved.  It reduced in size after the antibiotics but never went down to normal.  It has remained fairly thickened and wakes me up in the middle of the night frequently.

The other side became thickened too and never resolved.  

So my right side started to thicken more than usual last night.

So, I have a hard thickened area in front of and below my ear going down to mid neck, and a smaller thickening on the other side.  I still have the ‘Aphthous ulcers’ and thickened tongue areas since August.


I guess I am asking is what you do?  I have gotten to the place where I don’t want to see doctors anymore.  I am assuming it’s not important or the ENT guy would have actually done something.

I feel sick all the time like I have the flu and just don’t feel well.  I have scratched an area on my foot almost to the bone because it itches in the middle of the night.  Then I have blood on my comforter.

Should I continue to ignore it?  

I just don’t know what to do.  What do you guys thing?    

[COBOB]

Aphthous ulcers are commonly called Canker Sores.  They are more common with certain autoimmune diseases.  They can cause an inflammation of the pre-auricular lymph nodes near the parotid gland.  

The parotid gland is one of the salivary glands.  An inflammation of the parotid gland is called parotitis and the most common form is Mumps.   Parotitis with pain can be caused by a salivary stone.  So the first question is:  Have you ever had Mumps?  

Bob

[RedFlame]

I know that Aphthous Ulcers are caner sores, my issue with this large crater/canker sore is that I have had it since August.

I realize that the Parotid gland is a salivaty gland, my issue with that is that it hasn't resolved as I was told it would.  I don't have Mumps.

Has this happened to you?  Were you able to get it to resolve.  What type of treatment did you have?

Thanks,   Red

[COBOB]

I have had the Parotid Gland inflame twice.  One when I was about 10 with Mumps and again when I was 20 and contracted EBV/Mononucleosis.  Half my face and right side of my neck were swollen for over a month.  I was always monospot negative, but my EBV titer was over 100:1.  2 weeks of oral prednisone resolved the swelling.

Bob

[COBOB]

I did some more looking out at the NLM site and found kind of an interesting type of Parotitis that sounds quite a bit like the Autoimmune model on MS.  See what you think:

Pathogenesis of autoimmune parotitis

The autoimmune diseases listed above appear to be the same disease process with different manifestations. Initial insult to the gland may be a viral infection. Peptides derived from viral antigens and autoantigens become associated with class II histocompatibility molecules in the cytoplasm of the epithelial cell, and the human leukocyte antigen (HLA) complex is subsequently expressed on the cell surface. CD4+ T cells recognize these antigens and release a series of cytokines, which promote further T-cell activation.

B cells enter the gland and produce autoantibodies, including anti–Sjögren syndrome antibodies (ie, anti–SS-A, anti–SS-B) and rheumatoid factor (RF). B cells with cell surface RF can concentrate immune complexes and present antigens to CD4+ T cells. The acini are destroyed by this autoimmune mechanism. Continued cell division of specific B cells leads to oligoclonal expansion and increased chance of karyotypic error associated with neoplastic transformation.

If this is the case and you have an autoimmune parotitis, I suspect that it will respond to immunomodulation with steroids.

Bob

[Audrey_M]

Red:

If a sore or a cut doesn't heal within 3 weeks to a month, something is wrong and it should be looked at by a doctor.

What the ENT said on the initial visit is typically true, but it has not resolved on its own, so you do need follow up for both the ulcers and the glands.

In addition to the research that Bob did, I also found something that said the parotoid gland can become swollen due to a stone, just as with a canker sore that won't heal.

Sounds like its time to see the ENT again. Hope yours is good...I have a great one here, but CT is a long ways to travel for an appointment.

Audrey

[RedFlame]

Hi Audrey,  Thanks for responding.

I called and made an appointment to see my PCP next week.  My PCP is a really good doctor and I think she genuinely cares and is interested.  

She will probably refer me to the ENT at Uof M.    It's probably just a stone.  

I am just tired of going to doctors.  

Red

[RedFlame]

Hi Bob I meant to get back to you.  Thanks for all the research.  The strange thing about this is that the parotid gland doesn't hurt---it's annoying, a sort of pressure in my throut. It squeezes my esophogus making swallowing a bit cramped.  So I sometimes  have to re-position myself.  

I really thought that the ENT would have taken the stone out.  I was surprised by the brief time I had with him and the fact that he did absolutely nothing.  

I had blood tests a year ago with the SS_A and SS-B.  Sjogrens is something I thought about too.

The rheumatoid diseases were ruled out about a year ago.  


Maybe my blood levels are different nw than they were last year.  I am certainly much worse physically.  Time will tell.

I just wanted to thank you for all the research you do!

Red

[Quixotic1]

Red, the parotid gland is no where near the esophagus.  It lies outside the jaw.  This makes me think that you might also have some deeper lymph nodes swollen along with the parotid gland.  And if your tongue is truly thickened, then I worry about an infiltrative process - meaning something is infiltrating the related glands - thinking here about infections (TB will do this),  sarcoid, possibly amyloidosis, or even a malignant process.  There are several rheumatological processes that can involve these structures also.

Someone needs to climb all over this and have a look-see.  I think an MRI of your throat and neck might be in order.  Talk to your GP and see if something can be done in a less lackadaisical manner.  also maybe a referral to a Rheumatologist.  Your thyroid function should also be checked.  It can affect the tongue.

It sounds worrisome to me.

Quix

[RedFlame]

As always Quix, thank you for bringing your wisdom candor to this situation. To be honest, I have been particularly worried about this because of my 30 years of smoking, I quit---but only 2 years ago.   I kept thinking it was ‘all in my head’.  I see my PCP next week and am plan to be more up front about this and give her more information.  

I kept thinking that if there was really something wrong, it would have shown up in the brain and thoracic MS type MRI done in June.  I didn’t know there was a different process for the tongue throat and mouth.  I will feel better about this to get it checked.  

Thanks again for helping me feel more secure about asking her.  I will let you know what happens.    Red

[Sparkysarah]

Dear Red

Nothing medical to add to the helpful rsponses already given and thank goodness we have such experts here to help us.

I just wanted to say that once again you are obviously struggling and someone needs to take note of all your symptoms and try and get to the bottom of it. There is obviously something that has been going on for a while and there must be someone out there who can put all the jigsaw pieces together. I know that you are fed up of doctors but you have taken the right decision to see your own doctor and I hope that she will listen and refer you to someone who can help.

Thinking of you,

With love

Sarah x :)

[RedFlame]

Hi Sarah,  I have been thinking about you but I will msg. you.

thanks again for the encouragement.  ThMy new PCP is said to enjoy challenges such as mine and so far.  I really like her.  There has been so much going on that I didn't push her about the tongue throat face stuff.  

It is most likely nothing....but having it checked is important to put my fears to rest.

Thanks for the encouragement, I do need to put my doctor fears/feelings etc. to rest.  It's not fair to judge doctors based on experiences with other docs.

thanks again

Red

[Lulu54]

Red,
Please don't let your distrust/fear of doctors put your health in jeopardy.  I'm glad you're seeing the PCP this week and let her help sort this out for you.

gentle hugs,
Lulu

[Audrey_M]

Red:

Glad to hear that you have made an appointment and like your PCP.

Quix did put some sobering info as to why you should not ignore this anymore.

I'm sending you a PM and have posted in my journal about delaying reporting symptoms to doctors.

Hope that you're feeling ok and that you get some definitive answers with your appointment(s).

Hugs,

Audrey

[johnnymutt]

I really hope you get some answers quick Red. Just wanted to say I've got my fingers crossed for ya!

Johnny