[neongirl]

Have any of you been told you have these? After 2 yrs. of swelling under my jaw and around my ear, my rheumy referred me to a head and neck Dr./Surgeon. This Dr. said that I have stones in my sub-mandibular and parotid (sp?) salivary glands, and that they have caused an infection. He said it could have been caused by SLE, or, the fact that I am of Native American descent. Needless to say, I am interested to find out if anyone else here has had this due to SLE. Thanks

 

[Lily]

Hi there,

Fortunately no I haven't but I've heard they are reasonably common with Lupus and Sjogrens probably because of the dry mouth problems. Do you have Sjogrens?

What is the proposed treatment?

I hope you can be rid of them soon :hug:

love
Lily

 

[Katharine]

Hi there,

I haven't heard of them at all but then again, I haven't heard of a lot of the weird and not so wonderful things that can be connected to lupus.

I hope that, know that they know what it is, they can treat it effectively. It sounds rather ouch indeed. I presume that the infection is being dealt with rapidly?

Katharine

 

[neongirl]

Thank you for the replies
I haven't tested positive for sjogrens, and haven't had problems with dry mouth. The Dr. I saw wants to remove both glands surgically. I am terrified of this due to some pictures I have seen of the scarring and deformity this can cause.:worried: I am going to get a second opinion in Dec.. I thought the Dr. would give me something for infection, but he didn't. Three weeks prior to my appt. with this Dr., I had just had a rocephin injection and was on 2000 mg. of Augmentin daily for 10 days because of a sinus infection. That course of antibiotics made no real change in the condition with the stones.

 

[mamascan]

Hi Neongirl,
I have had problems and surgery for submandibular glands. This was done prior to my being dx'd with all these other things. It started innocentially enough in 1998 or 1999 with swelling and pain when eating or drinking. I was placed on several rounds on antibiotics, then finally sent to an E.N.T. (ear, nose throat). He did some tests, squeezed the offending gland which was filled with infection, and sent me home with more antibiotics. A month later I had my left submandibular gland removed. It was almost completely necrotic. (Gross!) I was placed on Salagen (to increase saliva) and felt great within a few days. It was in 2005 the doctors realized I had Sjogrens. Hard to say the cause of gland failure but and things were resolved I never really worried about it. My surgery was done as an outpatient and basically very simple proceedure. Of course they always half scare you to death with things that "could possibly go wrong", but my experiance was easy. I've not had any problems since. Keep us posted. Sorry so long, hope it helped.

Michelle

 

[Lily]

Hi neongirl,

I think it's wise to get a second opinion :yes: just to see someone else's take on this. I found an article for you which explains a fair bit about it:

http://www.advancedotolaryngology.com/Pages/PatientServices/1059.html

love
Lily

 

[rwb200]

Hello sorry to hear about the problems you are having.
I would get a second opinion before any surgery just to make sure you are going in as informed as possible.

My wife has had some problems with the glands. She was not told she had stones but that she had a blockage. Probably much the same jsut how it was worded.
With her after a few weeks it popped and what ever the blockage was came out and she had a few days of very abnormal amount of saliva. It then cleared up.

 

[Clare.T]

I'm sorry you have this trouble and worry. I would definitely get a second opinion, a good idea if possible whenever major surgery is suggested. I know only what I have read, but there are clearly other less dramatic procedures that just might be suitable in your case.
I hope they will keep an eye on the possibility of infection occuring because ongoing infections are especially debilitating when there's already a chronic immune system disease.

All the best and hugs
Clare

 

[neongirl]

Michelle, thank you for posting about your experience, it does help a lot to actually hear from someone who has had the surgery and is ok. I hadn't thought about the possibility of the glands getting necrotic, ICK!

Lily, thank you for the excellent article. It is a lot more in depth than what I have been finding on my own. The lithotripsy sounds interesting, and I had not thought about massage, but I will try it to see what happens before my second opinion appt..

rwb200, Thank you for sharing your wife's experience with me, I hope something similar happens to me:fingers: .

Clare, I am hoping the second Dr. will be able to offer a less dramatic way to resolve this:worried: I am wondering if part of the reason I have felt so tired and feverish every day is because of having a chronic infection all this time and not because of Lupus. My bloodwork for Lupus has been coming back normal, yet I have still had a fever and fatigue. It would be great if when this gets resolved, the fever and fatigue go away too