I also have a pea-size lump in my right patotid gland. The radiologist that did the scan says that is all that is left functioning of my parotid. I asked my ENT why my Parotid gland is dying and he says…I dunno! From reading several posts on this site, and other info found on the internet about ES, I gather that the Parotid abnormalties is yet another issue from the ES.
Sorry to reply so late! Very curious that the ENT couldn’t explain your parotid disappearance. Do you have Sjögren’s syndrome or symptoms of it?
Yes, I thought it was odd as well. That he took sooooo many years with ALL my symptoms/clues to finally diagnose me. My original ENT (retired and how I ended up with this other guy) suspected sjogrens wayyyyy (20-25 years) back when I first started with the parotid issues (mostly that first bite kind of twinge when my saliva would for some reason back up and need warm moist compress massage). I’ve had sialigrams (another joke) and cat scans and such. My newest rheumy suspected sjogrens as well with this latest “revelation” of the atrophy. Tested some of my salivary glands on the inside of my lower lip about a year and a half ago and came back negative. When I began to develop additional ES symptoms since that time, I made yet another appt and would not let him stop “feeling” until he found the tip of my right SP. Immediately responded with…Oh, you’ve got ES! Didn’t recommend surgery and sent me for 2 weeks of PT at the local therapy getting place! You know, just to aggravate it a little!!!
I’ve had salivary gland issues also, have a very dry mouth now so am constantly drinking water… dry eyes also. The blood tests were negative for Sjogrens, I decided not to bother with the lip biopsy, had read a few scary stories about that. I don’t know how it’s all linked, but that & the ES symptoms started at a similar time- it was when I’d been referred for the blocked salivary duct that they did a panoramic x ray & found the ES.
Hmmmmm Jules, seems to be a shared symptom for a number of us. Gotta have the water bottle with me everywhere I go. Funny how we aren’t suppose to carry around so much weight in our purse, yet I find that I need to add more and more things as I age and with this ES - LOL
Yes! Me too…
I gave up on a purse years ago & now carry a small backpack. Having the weight evenly distributed on both shoulders has saved my back.