Has anyone else been told they have fatty atrophy of the parotid gland
Posted , 5 users are following.
During a CT scan of my sinuses, my ENT discovered that my right parotid salivary gland has been completely replaced by fat. my left gland appears normal. The ENT suggested Sjogrens and sent me for SSA and SSB blood tests, but which came back negative. In the research I have done, it seems that not all people with SS have fatty atrophy of the parotid gland, but all women who have fatty atrophy of the parotid gland have Sjogrens. Has anyone else had the finding?
I am 40 years old and don't seem to have the classic symptoms of Sjogrens, but from what I have read on this forum, not all symptoms are obvious because people have been living with them for so long its become their 'normal'.
The ENT (who's wife has Sjogrens) has requested a lip biopsy and further blood tests. He said the lip biopsy is not without side effects.
If anyone has any insight, I would greatly appreciate hearing your expereinces.
Thank you in advance.
0 likes, 8 replies
tj268 Xerxescat
Posted
I would be leery of a lip biopsy just because of what could possibly happen due to so many nerves in that area. They aren't always correct but I guess neither is bloodwork. My advice is get all the bloodwork and testing first! Redo it again if you must.Only biopsy if 100% neccessary and again it could not be accurate. Lots of debates about it. I have heard many dr's make dx's by symptoms alone because you can get negatives all across the board.
As far as sympyoms many vary. I do not have dry eyes that bad but have a horrible dry nose (I just posted about nosebleeds) elevated liver enzymes, choking problems, and at times extreme jint and muscle pain. SS also mimics several other auto immunes. I am not familiar with the paotid gland but will look it up. I hope I helped even if it's just a tiny amount. Please keep us updated and best wishes!
Megheart Xerxescat
Posted
Fascinating! Perhaps the atrophied parotid gland is a forerunner of other symptoms (not that we want you to have Sjögren's). Do you not have any symptoms at all?
You need to keep in mind that for some people it can take several years before their Sjögren's specific blood markers come back positive. Hopefully this ENT will know that, as there are medical journal articles which discuss this aspect.
You sound like you are in good hands and perhaps to be 'forewarned is to be forarmed' as the old saying goes!
Megheart Xerxescat
Posted
That should be 'forearmed'.
Kathy123 Xerxescat
Posted
Although an ENT would be the one to do any surgery on a parotid gland, a rheumatologist would know more about Sjogrens. If you have access to a rheumatologist through your medical plan, you should see one. I would not have the lip biopsy. They are painful, have some risks, and do not prove anything. Fortunately, my doctor has not recommended one for those reasons, but don't let a doctor talk you into any procedure you do not want.
Xerxescat
Posted
Hello Everyone,
Thank you so much for your feedback. I was waiting to reply to your comments because I knew I was going to see the rheumotologist today.
I can't thank you all enough for your advice and insights. Everything you wrote all made sense AFTER I saw the rheumotologist. I guess everyone takes their own time to process things - but wow, yeah. I agree with what each of you has said.
The rheumotologist seemed very knowledgeable. She corrected the radiologists findings of fatty atrophy of the parotid gland and said in fact it was fatty infiltration of the parotid gland. Other than the fatty infiltration and swelling, my gland is a similar shape to the normal one in the left side. Today I learned that the only thing that causes fatty infiltration of an organ is inflammation - so there is something going on and it's been going on for a long time! Basically the right gland is gone (and I believe non-functional).
I also learned that I DO have dry mouth. This was a surprise to me. I drink a lot of water and use endless amounts of lip balm, but it never occured to me that this wasn't normal. Know what I mean? The doctor noted that my saliva was very thick and created strands between the top and bottom of my mouth. So many things are starting to make sense. The rheumotologist told me the worst thing I could do was to drink water to wet my mouth because this washes away the saliva I do that.
Almost all of my blood tests came back normal - except for something called a C3 compliment. This was low and indicative of either Sjogrens or Lupus. My ANA tests haven't come back yet, and she has ordered a new round of tests.
As for a diagnosis, she said she can't positively diagnosis me with Sjogrens on the basis of my current blood results, but she said it is very likely I have Sjogrens. She said that if I wanted a firm diagnosis, I could have the lip biopsy, but that it can come back negative or inconclusive. She also mentioned biopsying my fatty parotid, but said it was risky since there's a facial nerve that runs though (or near) the gland.
Phew! My head is still spinning.
So, I am going to have the new blood tests and wait to see what comes back. I also think I will take everyone's advice and stay away from the lip and parotid biopsy. This was, after all, an incidental finding. I just have a feeling that in a few years, my blood tests will confirm that I do have Sjogrens. (I just turned 40 by the way).
Thank you all SO MUCH for commenting on my post. I would love to hear further any thoughts or ideas. It's nice to know I am not alone.
tj268 Xerxescat
Posted
Hi, I am so happy that you are getting all this correct info. (not happy you have ss
). Finding good dr's is very tough and you seem to have been a lucky one
Please keep us updated.
Megheart Xerxescat
Posted
Yes, you do seem to have found a good Rheumatologist at the outset.
Although at this time your Rheumatolgist cannot confirm that you have S.S. you have at least three symptoms pointing in that direction.
Have you had your eyes checked out by an Opthalmologist or Optometrist for dryness eg. via a Schirmers test? That test can be quite definitive, at least while you are waiting for other blood markers to rise. I didn't realise that I had dry eye as I didn't have the characteristic grittiness which people would mention, however I had other eye symptoms which were overlooked.
As you have probably read on people's posts it may take several years before your ANA's and other S.S specific blood markers show changes. It is frustrating, however meanwhile I think you probably need to 'assume' you have it or some allied autoimmune condition and be kind to yourself when you feel unwell.
We'll look forward to hearing whether these next round of tests show any changes....in other words....keep in touch!
dt20343 Xerxescat
Posted
I had a lip biopsy about two years ago. I had symptoms of Sjogrens for a long time before this but the bloods were repeatedly negative for the antibody markers. I had worked in the diagnostics industry on autoimmune disease field for a number of years including on Sjogrens disease and I was pretty much 100% sure I had Sjogrens but was dismissed by my GPs. My Dentist agreed with me and refered me to the Dental Hospital.
The Dental Hospital were very helpful they persuaded me to have the lip biopsy. I was not keen but eventually went for it. It was much more than I expected, considerable swelling and a patch of numbness for a long time but that has now resolved. The surpise was the biopsy came back positive and it changed the way I was treated . I was immediately sent to the eye clinic and rheumatology and had scans done on my salivary glands and chest x rays to rule out lung involvement because I had had a lot of sinus infections and problems that led to repeated chest infections. I have been advised by the Rheumatologists that having a positive lip biopsy means that I need to be monitored more closely . Sjogrens patients have a 5 x increase in the risk of developing Lymphoma. A negative lip biopsy pretty much cancels out the increased risk, bringing it back to the average non Sjogrens individual -so a negative result on a lip biopsy is a good thing for Sjogrens patients .A positive lip biopsy means that you are in the increased risk catagory for lymphoma but it doesnt mean that you will develop it . So am I glad that I agreed to the lip biopsy? - if you had asked me the week I had it done no! but after I got the results absolutely medics belivied me and Iam getting good treatment and monitoring.
If I was you I would say yes to the lip biopsy it really is only a small patch of numbness and mine resolved over time. I would however say no to the Parotid gland biopsy due to the risk of hitting the facial nerve and in any case you know that the gland as been damaged by inflammation.