A lip biopsy, specifically the removal of minor salivary glands from the lip, is a test to diagnose Sjögren’s Syndrome.
A lip biopsy may be performed for other diagnostic reasons. Please click here for more information from the Jerome L. Greene Sjogren’s Center at Johns Hopkins.
What to Expect
The six minor salivary glands that were removed from my lip. Three to be used for my diagnosis and three to be banked for further examination for the SICCA study. They look a little like tiny tapioca balls.
The procedure did not hurt me. There was minor discomfort with the needle that injected the local anesthetic. I felt some pulling as the surgeon hunted around for my minor salivary glands. Apparently, mine were not abundant and she had difficulty finding the 6 minor salivary glands needed. The surgeon mentioned, “Maybe you do have Sjogren’s because I am not finding the minor salivary glands. Your body may have produced antibodies that killed off some of the glands.”
The surgeon said this while her hands were on my lip so I did not get to ask many questions. I did get to tell her that I had two minor salivary glands removed from the back of my mouth because they were swollen and caused pain. My dentist, who has no expertise in Sjogren’s, removed them.
I learned that it was extremely important to put on an ice pack immediately once the incision was closed with stitches to reduce swelling. I received two large stitches. I wish I had access to a second ice pack once the first ice pack lost its coldness. Because I was participating in a study that sent me from doctor to doctor in completely different areas of the hospital, I felt helpless some times in terms of finding some one to help and get me things I needed. I was alone (without a companion) and would highly suggest that if
My asymmetrical lip swelling approximately 36 hours after the procedure.
participating in the SICCA study, you bring someone along. The staff at Hopkins were extremely attentive – it’s just difficult to advocate for yourself under these circumstances and having a friend or loved one with you is a bright things to do. If you read my past posts, you will see that I often go it alone and regret it.
I was informed that 50% of persons receiving a lip biopsy feel discomfort after the procedure. I fell into that category. Once the local anesthetic wore off, I was in some serious pain. Again, I was alone and did not think to go directly to the hospital pharmacy to get my pain medication. Plus, I had to drive myself to the airport and I prefer not to drive on pain meds. Once I got back home, I picked up my pain meds and they helped.
Healing
Nearly two days later, I am still a little swollen and have some pain. Mostly, it is the
Stitches that closed the incision of where my minor salivary glands were removed for the lip biopsy.
annoying type of pain. Our mouths heal quickly, so I am looking forward to healing!
Results
I am not certain of how long it takes to get results from a lip biopsy. I got my biopsy as part of the SICCA study that is International and all samples are examined by the same lab. Based on the time frame of my visit and procedures, I expect to get results within a few weeks.
Thank you for reading. I am no expert on lip biopsies or Sjogren’s (pronounced “show-grins”) but am happy to try to answer questions you may have about my experience. And, I always enjoy hearing from you.
Happy healing!
-Q
Filed under: Uncategorized Tagged: | labial biopsy, lip biopsy, lip biopsy for Sjogren's Syndrome, minor salivary glands, salivary gland biopsy, SICCA International Registry, Sjogren's Center at Johns Hopkins, Sjogren's Syndrome
Yowch. Poor Queen! Can you get some lidocaine? They make a swish and spit of it – it might be nice for the pain.
I definitely agree with having a companion when possible: an extra pair of legs to run errands (get pain meds or a snack), an extra set of ears, somebody to watch your stuff while you have a procedure done, etc.
You are very generous to write up your experience so somebody searching for info can get advice. I expect you will make a difference for somebody going through the same thing.
I learn so much from you, Q! I had no idea there were salivary glands in the lip like that, and had wondered why they wanted to do a lip biopsy.
I’m sorry you had to go it all alone!! A day like you had must have been incredibly overwhelming, especially because symptoms (like fatigue! and brain fog!) don’t go away just because you’re traveling for medical appointments. I know online support isn’t the same thing as live, in-person support, but I hope you know we were all thinking of you during your entire Hopkins visit and hoping that this all gets you a diagnosis and treatment that helps you feel (and function) better!!
xoxoxoxo
Awww… thanks everybody! i definitely feel the love and support. If anyone needs a companion for an appointment, I’m available. : )
Interesting. I’m having a lip biopsy soon and am nervous about being awake while someone cuts open my lip and explores for salivary glands. I am glad that they gave you some pain meds. It doesn’t look like you bruised much, did you? So, how long did it take your lip to heal? What were your results?
Thanks for sharing. I am going next month to participate in the study. Fortunately, I do have someone going with me. What type of pain medications do they prescribe? I am just hoping for answers.
LL