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Got parotid biopsy...thoughts?

Posted , 5 users are following.

CoffeeQuartz
CoffeeQuartz

Hi all,

I have been sick for several months, and although I do have fibromyalgia the symptoms do seem to be out of the norm for that. I have seen a rheumatologist and have been for a nuclear bone scan (neg), had bloods and all negative. I was sent for a biopsy to see if I might have seronegative Sjogrens, and a parotid biopsy was done.

My surgeon remarked that I had unusually small parotid glands. Seven weeks of waiting and I got the results yesterday. I was told by the secretary that there had been a problem with the sample, that there was very little salivary gland tissue and too much fatty tissue, but that they had preformed some test and biopsied a lymph node and it was negative so I had nothing to worry about. The results will be sent back to my rheumatologist and I am seeing them on Monday for a follow-up.

Am I right to be slightly iffy about these results? If it had been an outright "it came back negative" then I would just accept it, but it almost seemed like they were qualifying it by saying the sample wasn't great. I wonder if I should raise this with my rheumatologist? I am wary of alienating her by looking like "one of those patients."

I also read about parotid gland tissue being replaced by fatty tissue in some instances of SS and how long-term SS can cause the gland to atrophy. I am not a medical expert so I don't know if this would have been clear from the sample if this was what was happening to my tissue but I do wonder if there might be a connection between all of these things...

Could I ask for opinions on this? Would you query the result? Do you think I might have identified a potential connection?

I am so lost right now I need help! Thank you!

1 like, 3 replies

3 Replies

  • chris08587
    chris08587 CoffeeQuartz

    Posted

    hi Coffee, im no help re: your question re: glands, but i did want to tell you i am very impressed with your knowledge and very much understand your fear of being "that patient". ! it is a very valid concern, with what i have read in your post, it seems you will come across as intelligent and informed without being over bearing. i hope some people here can help answer your questions. wanted to just give you my support.

  • donna57006
    donna57006 CoffeeQuartz

    Posted

    Dear CoffeeQuartz,

    I googled https://www.researchgate.net and copied and pasted what is below. I know this is extremely technical, but I think if you start googling parotid glands and fatty tissue, you will find a fund of knowledge.

    To investigate abnormal fat deposition in the major salivary glands associated with Sjögren syndrome. We analyzed the fat deposition in the parotid and submandibular glands of 33 patients with Sjögren syndrome by using short-inversion-time inversion recovery (STIR) and fat-saturation MR sequences and CT values. All three in vivo techniques substantially confirmed premature deposition of fat in the major salivary glands in association with Sjögren syndrome. Furthermore, this change was characteristic of Sjögren syndrome, and the severity of fat deposition correlated well with the impaired rates of salivary flow in these patients. Monitoring of fat deposition might be useful for diagnosing Sjögren syndrome and assessing its progress in patients whose clinical and serologic findings are suggestive of the disease.

    I understand why you would be concerned and you don't look like "one of those patients"; you are not a hypochondriac; you are normal and want answers. My blessings and prayers go out to you and I believe you will be fine. donna

  • reme
    reme CoffeeQuartz

    Posted

    Hi Coffee

    Just to say I also was seronegative for sjorgrens but they did a lip biopsy and like you the initial results came back from the lab saying they didn't get enough tissue to examine properly or give a diagnosis. But my ent doctor sent it to another lab as wasn't happy with results and second lab confirmed sjorgrens .so if they had gone on first results I would have been undiagnosed for past 4 years and wondering was I going mad . I am on plaquinel since and keeps my flare ups low but I still battle on. Always question if u know your gut feeling things not right take care

    Reme

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