Hey Everybody,
As I stated in an earlier post, I had my biopsy on Dec. 2nd. and today it feels like it is a little swollen. It's sort of like a bump and is sore. I was just wondering if this is normal for healing or could something screwy going on here? When I run my tongue across it, it feels like a big blister or bump, thats the only way I can describe it. Also the trauma from the whole experience has totally wiped me out. I'm so tired and I just can't get myself going. Has anyone had this going on?
Thanks,
Sandisue
Sandisue, sometimes we try and warn posters here that the lip biopsy fiasco isn't worth the trouble. Often it comes back inconclusive and gives even more frustration.
Some have no problem they say, but many including me, have numbness much later. I have numb lower lip 4 years after. Yours will probably heal up within a couple of weeks. Someone told of putting a little ice on the outside of the lip, covered by a cloth of course.
Sorry your lip is sore and I hope some on the fence about this read your post and mine. Lucy
Thanks eyeamdry,
I swear that the Sjogren's Specialist stood right there and told me that the lip biospy would tell us for sure if I had it. Since my blood work was negative, but I had all the other things. Wow, that just makes me crazy...I hate to think that I might have went through that for nothing.
Thank you so much.
Sandisue
Though mine showed focal sialadenitis and lymphocyctic infiltration, two SS hallmarks, it was somehow pronounced negative. I thought maybe it failed the Greenspan score for density (they did not supply one) so I had them redo it. It came back the same way, again without a Greenspan score. Anyway, they biopsied two spots and both abcessed. After being given antibiotics they healed, only now I've noticed irritation because they missed one of the stitches and it's still there. They really need a better way to go about this. Hope you feel better soon.
The bump is common. I still have mine (years later), but it doesn't bother me.
If you're sero-negative and need a diagnosis, I'm glad you had it done. I was that way and the lip biopsy gave me the diagnosis.
GPHX: You need to send it to a place that uses the Greenspan scale. Not everyone does, but it's the best way to gauge the number of infiltrates. Having infiltrates only isn't enough...it's the number per focus (aggregate of fifty or more).
Even though I also had a bump afterward and it seemed to last pretty long (although the pain died down fairly quickly), I can't always tell where it was anymore. I have a little bit of numbness still if I think about it, but I've gotten used to it and it doesn't bother me anymore.
In my case, the lip biopsy was very helpful in my diagnosis, so hopefully it will be in your case as well.
Hi Sandisue,
I too am sorry that your lip hurts and hopefully it'll heal soon. Like Lucy, ice worked for me (used ice for about three weeks as the swelling would not go down (I have an inflammatory problem)). I had that knot for several months, but it did finally disappear. Again like Lucy, my lower lip is still numb at the site and surrounding area six years later.
Now this is just my little old opinion only as I'm not in the medical field or anything like that, but I would have to disagree with the SJS specialist because I don't believe that the procedure is fool proof. As being considered the "gold standard", the medical community needs to standardize the procedure as different doctors will do it differently (the ENT that did mine was in such a hurry to get it done as fast as possible that he was not as careful as he should have been). Even if you have the best doctor doing the procedure, there is no guarantee that he'll get a good sample, or that the sample will be read correctly. Okay, off of my soapbox! :)
I'll keep my fingers crossed that the doctor got a good sample and that you'll get an answer soon.
Take care of yourself -
Patze
I agree with Patze that the dr. who removes tissue in a lip biopsy doesn't always get a good sample -- or that it will be read correctly -- so I hope yours comes back with something definitive.
I'm fortunate that my two lip biopsies went well. The first one left me with a tiny numb spot that took 2-3 years to disappear; it confirmed the SjS Dx. I had no numbness with the second one (done at UCSF as part of the SICCA study).
Hi,
I just had my biopsy done about 3 weeks ago, and I still have a bump that seems to get irritated at least once a day! I am hoping with time it will go away completely.
My ENT stood there and said he was going to take more than enough samples (as he rushed through the procedure) needless to say the report came back, not enough samples to report from, but based on what we have...
I had over 50 focus in one area, and they used the greenspan scale, not enough sample, but they said I don't have sjs, go figure, and they can determine all that!(sorry I don't have the report in front of me to read from).
Mary
Makes sense. Unfortunately they charged me twice for the same result, $600. Maybe I should call the lab and request a Greenspan score before paying my bill. =)
Quote from: anita on December 07, 2010, 06:28:48 AM
GPHX: You need to send it to a place that uses the Greenspan scale. Not everyone does, but it's the best way to gauge the number of infiltrates. Having infiltrates only isn't enough...it's the number per focus (aggregate of fifty or more).
I had mine sent to a second lab to get the Greenspan scale used, and they still did it without enough sample... crazy, it makes you nuts!
I would make them use it for sure, you want to see the scale, the numbers, question your doctor! Mine called the lab and the pathologist was caught in a big fat lie thats why we sent it somewhere else... but, it was just a calamity of errors at that point, wrong birth day, not enough sample, I could go on and on LOL don't sit still get the NUMBERS!!!
Mary
Mary,
It sounds like the report might have said, One focus or aggregate of 50 infiltrates (lymphocytes, plasma cells and histiocytes), instead of 50 focuses. I can't imagine 50 in one area is even possible since each focus is 50 infiltrates.
Anyway, according to most criteria, a minimal positive (grade 3) is one focus per 4 mm (sq), so if there was one focus, it should have been POSITIVE. So sad that this happens to people over and over again. The scale is established, yet it seems some of these pathologists have a hard time following it. If they just gave us the results we could determine it...LOL
Here's how the Greenspan breaks down
Focus = aggregate of 50 or more infiltrates (lymphcytes, hitsiocytes, and plasma cells)
Grade
0 = absent any focus
1 = slight infiltrate
2 = moderate infiltrates or less than one focus per 4 mm (sq)
3 = one focus per 4mm (sq) *** most academic criteria requires this minimum for a diagnosis
4 = more than one focus per 4 mm (sq)
Ref: Greenspan et al: The histopathology of Sjogren's Syndrome in Labial salivary gland biopsy Oral surgeon 37: 217-229, 1974.
So Mary...just like you said, Question your doctor!
Hope this helps
My Dr. stated the lip biopsy wasn't worth doing. They're too unreliable. He dx.es by symptoms and responce to medications.