My rheumy has scheduled me for a lip biopsy to confirm Sjogren's next Thursday. I have researched some and it seems that the lip biopsy can cause permanent numbness in the lip. The illustration they show on Medhelp for salivary gland biopsy is showing them doing the procedure on the parotid glands. I also understand that lip biopsies are often inconclusive because it is difficult to get the right spot. Should I ask my rheumy about the parotid, or go ahead with the lip biopsy? Or should I just skip the whole thing? She took one look at me and announced I had Sjogren's. The she tells me that I have a positive Ro which I am assuming is the anti-Ro/SSA, also parotid glands are extremely swollen.
If you've got a decent doctor, it's not hard to get the right spot. They just need to know that a salivary gland looks different from a fat deposit, or in my case, a nerve. I had a Fellow learning how to do it, and yes, she grabbed a nerve first. Yes, I had some tingling and numbness after, but it's an area about the size of a pencil eraser, and it's almost back to normal. The good thing about a lip biopsy is they can see how much the lymphocytes have infiltrated, rather than just how much antibody you have circulating in your blood. It's probably not necessary for a diagnosis at this point, though.
When I went for my lip biopsy the doctor who was to do it tried to talk me into the parotid biopsy, saying it would be more conclusive. I declined and asked him to do as my rheumy had ordered and it was positive. After reading about the parotid biopsy I was happy I insisted on the lip.
I had mine well over a year ago and I do have a partially numb bottom lip. It is really of little concern to me; I just ignore it like my other paresthesias.
Good luck in your decision, whichever you choose. Hope you get some relief soon!
OK, I went for the biopsy. It came back non-diagnostic. I am sooooo glad I spent all that time, money and energy to find that out. Imagine not knowing! And to add insult to injury, the ENT made me pay before I even spoke to anyone. The receptionist asked my name and the next words out of her mouth were "that will be $117.00". For WHAT! I haven't even had my vitals taken! First time I have EVER been charged before my visit.
Sorry that turned out such a waste! Is your doc still going to treat you for Sjogren's? Can you get a copy of the actual lip biopsy report? If it was done right, it should either have a rating 1-4 or a listing of how many clusters of lymphocytes of a certain size that were seen. Although, if your doc is going to start treatment for Sjogren's, it might not be worth pursuing.
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