Can I have swollen submandiluar and still make saliva?

[littleone]

Hi All -

I am new here but having read several of the the threads I have to say, darn you guys are good and an incredible resource!

I have suspected sjogrens but so far no antibodies have revealed themselves. (I have Celiac, pernicious anemia and Graves so def have the A/I predisposition).

In addition, to CRAZY dry eyes, perpetual dry cough, and debilitating fatigue I have marked and significant swelling in my cheeks and chin. My ENT said it looks like classic sjogrens swelling but dry mouth is actually not one of my symptoms. All of my symptoms got better on prednisone (a 6 months course of high dose) but it was hard to tell w swelling bc my face was sooooo swollen from the steroid. I have been off of it for almost a year and my symptoms have coming blazing back and the cheek/chin swelling is worse than ever.

My questions are:

1. Can I be making a good amount of saliva and still have a stone/ submandibular swelling? The swelling is always there but sometimes it is much worse than others.
2. An ultrasound showed swelling but what other imaging diagnostic would be helpful, if any?

I do drink a ton of water w lemon and eat really well but nothing seems to ease this.

Thank you!!
littleone

[cccourt1942]

This one sent me back to my textbooks.  That didn't tell me anything. So I googled it.  Two entries  state the submandibular glands produce 60 to 70 % of our oral saliva.  I was amazed.  I only had one side of my submandibular glands stop up once.  The parotids were my problems.  When my saliva apparently was nil, why didn't I have pain in that submandibular area when they were either sludged up or non-functional?  Curious.  Anyway I suffered with this for 6 years previous to a diagnosis from a rheumatologist.  My ENT never performed an ultrasound.  I believe (thinking about it now) is (unless I had an apparent infection) he would (this is my term, not his) "milk" my parotids to check the flow and now I know the consistency of the saliva.  They always produced.  The reason I think he never caught it (SjS) is I couldn't always get in to see him...so I would go to my GP who provided treatment.  The ENT did dilate one parotid once.  It smarted a bit!

BTW:  Does an ultrasound show the duct stopped up? I mean, is it that clear?

[littleone]

cccourt1942-

Thank you!! I really appreciate. Based on what you found, it sounds like a stone would be unlikely. Maybe the glands are just angry?

The u/s only revealed swelling. Is that how most are dx or do I need an MRI or some other diagnostic?

[irish]

The glands that produce saliva are the parotids, sublingual and the submandibular plus there are hundred of tiny saliva glands in our oral cavity that each produce a tiny amount of saliva. I have had one submandibular gland removed and can't say that it made a difference in my dryness.

I am dry and have lost all my teeth because of my dryness and have had a lot of tiny stones in my ducts. It pays to drink a lot to keep the glands producing what little moisture they can. Also drinking liguids that make you pucker help to pull some of that moisture from the glands. Eating pickles is another thing that really can draw on the glands. Everyone makes stones at a different rate and heat and gentle massage plus higher fluid intake do help. Good luck. Irish

[littleone]

Thx for the intel, Irish! Do you recall if you had a MRI/CT or do they mostly use ultrasound?

Thx, again. So happy I found this board. 

[cccourt1942]

littleone:  I didn't ever have an MRI or other scan.  My ENT always said "sialidenitis."  The rheumy and I believe it wasn't classic sialadenitis.  We think it was the mucous drying up.  We'll never know.  Anyway...because the ENT was able to "milk: thus produce saliva, further tests were not indicated.   So yes, you are producing enough saliva even with one stopped up or swelling.  They swell when the saliva can't get thru the duct.   When mine dried up, they dried up.  I should have realized something else was wrong as the sialidenitis virtually ceased about a year before the DRIEST of mouths appeared. Then I went another 9 months without mentioning it to a dr.  That may not be fair.  I only go to a dr for a sinus infection or sialidenitis.  And when those stopped occurring a few years ago, I was just happy.  I had what the ophthalmologist called "allergic" conjunctivitis 3 times in 4 years...and an ear infection.  But never mentioned the mouth to the opthal or at GP for ear.

I did the foods which caused salivation: sour, sucking lemon drops, LEMONS and LIMES...nothing stopped the sludge and pain.  I take that back, the massage and warm compresses could sometimes get the sludge moving.  I use sludge as that is what the ENT called it.  The rheumy...many years later...agreed it is sludge..not  stones.  Now that I understand about our thick, thicker, and thickest mucous, it  makes  sense! 

I asked about your ultrasound out of curiosity since I had never had any test on my salivary glands.  By the time I was diagnosed my blood work was  positive, positive, positive...and I presumed doctors don't go back to detrmine what has dried up.  When you can't catch your breath for lack of lubrication to swallow...I figured everything was bone dry.   Unlike all of you thoughtful, curious and intelligent people, I just sat around feeling tired, old (well..I AM old) and thinking this is how some OLD people feel.  And they do---if they have SjS!

I hope you get a diagnosis soon.  And if you have lurked around these boards, remember, a seronegative result does not always mean you don't have SjS.  You will see MANY posters say their drs are treating their symptoms no matter test results.  Smart doctors!!  My rheumy flat out told me he believed I had Sicca Complex but would do the blood tests anyway.  He was astonished.  That was his term, not mine.  Again, you will see many Sicca Complex posters receive the same meds as positive SjS receive.  NOT ALL...but many.  You hurt just the same...and I believe this is why you are anxious to be diagnosed thru your salivary glands via CT or MRI.  RESPECT may be the word....but RELIEF is our credo!

[irish]

I have had so many cat scans and other testing over the years (like over past17 years) plus MRI's and I can't remember when, where or what anymore. I do know that I had oral dryness since my early 20's plus hoarseness and always had to suck on something or chew gum. I have had episodes of probably sludge or small stones that worked their way through the ducts and the pain was agonizing to say the least.

My doc saw the the stones sticking out of the submandibular gland duct and that precipitated the removal of the gland. I am of the opinion that it doesn't matter what or howo much testing we have of our glands as when they are infected they swell and hurt and often drain rotten stuff. When they have stones and sludge they hurt and and swell and will drain rotten stuff and then there are the days that they are just swollen and hurt some and you know that they will eventually drain rotten stuff.

It is all pretty much the same with varying degrees and not one understand unless they have gone through it. I have been suffering for many years and will continue to suffer with this until the day I die. I have to live with it and go with the flow. Get antibiotics when needed and taking plaque nil has helped to decrease some of the inflammation in the ducts and tissues in the throat area. Good luck. Irish

[littleone]

I'm overwhelmed in the best way possible by your thoughtful responses. Thank you!

You are exactly right, I feel so sick it's unreal and so a firm dx would be validating to say the least.

I catch a glimpse of myself in the mirror and sometimes can't believe it. The shapes of my eyes have changed and my face is so swollen I look like Charlie Brown.  Not to mention, I'm malabsorbing due to GI issues so my body looks emaciated. The juxtaposition is a lot.

Anyway, as you know it can feel so isolating. Prior to being sick I was getting my masters degree and modeling w major campaigns in magazines, catalogues, billboard etc. Illness can change everything.  I know I still have so much to be grateful for the but the limbo of not truly knowing what's going on is wearing on me.

Anyway, thank you so much. It means the world to have ur support, guidance and expertise.

Little one

[Hopeful]

Hi little one,

I have bilateral submandibular swelling. I have had CT scan, MRI and ultrasound. The Drs cannot figure out what is causing this. I also have normal saliva flow.

This has gone on for over 5 months out of the blue.

There is a procedure that I have not had done called a sialondoscopy that can test for strictures that do not appear on MRI's CT Scans or ultrasounds.

I have recently been diagnosed with Hashimotos which does not explain the submandibular swelling. I'm waiting to see a sjogrens specialist at Johns Hopkins in a few weeks. I will keep the board posted once I see him. Perhaps it may help others with suandibular swelling.

Best,
Hopeful

[littleone]

Hopeful -

It is supremely frustrating! Do you also have swelling under the chin, too, or mostly cheeks?

Pls keep us posted on what you learn in Maryland.  Fingers crossed that we may find answers.

After my ENT visit yesterday, I am being tested for Cushings due to the moon face.

Hang in there!



Littleone

[Hopeful]

It has been scary and frustrating.

At times I have experienced puffiness along my jawline. However, that is not my biggest problem. I don't have a swollen face, but my chin gets affected. I have the submandibular swelling all of the time. It never goes away. It can get worse, usually after eating. However, there are times when I eat when it just stays the same.

I have tried to find a pattern regarding the types of foods that are affected by it but it doesn't seem to work that way.

Good luck with your ENT. I will keep you posted after I see the Dr in a couple weeks.

Hopeful

[Dolly Dimples]

Hi, been reading this post with interest, as I have suffered dryness for a very long time now.

   Thing is I did not notice anyone complaining of food sticking in their throat, or difficulty in swallowing.

   I posted a thread recently about my swallowing issues.  Well I had an Endoscopy which revealed a lesion near entrance to mystomach.
  I now am waiting for an appointment for a CT scan. I was told that this Lesion was not the cause of my swallowing issues,

so  I was preuming that it is from the dryness of my throat, but now I am confused, as there sounds like some here have an extreme case of dryness, but no one saying it affected their eating or swallowing.

Anyone, please correct me  if I am wrong here., and my sympathies with those having all this horrible stuff going on.  Thanks,  Dolly x

[littleone]

Dolly- I am not sure the answer to your question and will defer to the more experienced folks.  I do hope u find an answer.  Swallowing issues are no fun 

Good luck!
Littleone

[RoseL]

Hopeful, Wanted to check to see how your appt went at Hopkins. I'm in the B'more area and used to see a Sjogren's specialist at JH, but he moved away. So, I'm anxious to get your opinion on the doc that you saw. If you liked him/her, please share the name so I can make and appt. Btw, I'm having some of the same oral symptoms. 

Thanks!

[litliwlowa]

Hi, been reading this post with interest, as I have suffered dryness for a very long time now.

   Thing is I did not notice anyone complaining of food sticking in their throat, or difficulty in swallowing.

   I posted a thread recently about my swallowing issues.  Well I had an Endoscopy which revealed a lesion near entrance to mystomach.
  I now am waiting for an appointment for a CT scan. I was told that this Lesion was not the cause of my swallowing issues,

so  I was preuming that it is from the dryness of my throat, but now I am confused, as there sounds like some here have an extreme case of dryness, but no one saying it affected their eating or swallowing.

Anyone, please correct me  if I am wrong here., and my sympathies with those having all this horrible stuff going on.  Thanks,  Dolly x

Good point Dolly. Only time I seem to notice difficulty with swallowing is when my reflux is kicking up. Few years ago when I had developed Barrette's Esophagus I had a lot more difficulty with the symptoms you describe>

My questions are:

1. Can I be making a good amount of saliva and still have a stone/ submandibular swelling? The swelling is always there but sometimes it is much worse than others.
2. An ultrasound showed swelling but what other imaging diagnostic would be helpful, if any?

1. I can only speak to what I experience. I've had a nodule in parotid since um 2006. No one seems to agree on what it is. Last year, incidental finding on MRI that all major salivary glands were somewhat enlarged, subsequent MRI for another reason a month later showed them unremarkable other than that persistent thing in Parotid (depends on which doc as to what it is between lymph or nodule or whatever).

I do notice my glands seem to swell and subside to normal, much as my flares do. Weird. When they swell I have more trouble with dry mouth, even on Evoxac for that. But I don't notice any correlation between the swelling and less or more saliva. Except at night. When salivary glands are noticeably swollen, those are the nights I wake up with horrid dry mouth.

2. That one I would defer to your doctor.