Lip Biopsy

[chrisgirl]

Hello all.  I recently had an appt. with a new neurologist in my quest for a dx.  She said I need to push the rheumy for the lip biopsy because if I do have SJS it needs to be treated.  I am using eye drops and the rheumy gave me samples of Lyrica which I have yet to try.  I have lots of tingling, pins and needles, muscle pain and the neuro feels the lip biopsy is a must.
All my bloodwork came back normal.  Is the lip biopsy 100 % accurate and can anyone tell me if there are risks?  The new neuro said it is painful and the pain can last a while and to make sure an ENT does it.
I need to call the rhuemy tomorrow.  I have been dragging my feet on this because he told me the lip biopsy wasn't needed.  My symptoms are only getting worse.  Any advice?
Thanks,
Christy

[forest]

Sorry I can't help with advice chrisgirl as I am not a doctor. I am sero-negative as well, and trying to decide whether or not to ask for a rheumy appointment and/or biopsy when I see the internist  on Wednesday. I have the tingling, pins and needles and bad muscle pain as well. I was given eye drops by my optometrist, but I just can't get used to putting them in. Most of it ends up on my face instead of my eyes!

Good luck with your dx quest...

forest

[eyeamdry]

Chris, I will step up and give my OPINION on this subject.  Some have had successful lip biopsies and with little damage to the tissue afterwards.  They, of course, say to go ahead with the biopsy.  "It's no big deal."   Since you have no positive blood results, it's certainly a quandry.

Is the lip biopsy 100 % accurate and can anyone tell me if there are risks?  The new neuro said it is painful and the pain can last a while and to make sure an ENT does it.

No, the lip biopsy is not at all 100% accurate.   Even worse is one lip biopsy can be "positive" to one dr and another will say "it's negative."  In other words, it's subjective.  I had a lip biopsy done just before my bloodwork because of some dr messups.  The biopsy was "negative" according to a rheumy who I never saw again.  Well, I went to a university hospital and they did the correct bloodwork which did come back positive.  Even though that rheumy said the lip biopsy was negative, my new rheumy, my oral surgeon who did the biopsy said it was positive, my ophthalmologist read it as positive and my rheumy at the University Hospital called it positive.  But, I have a numb lip over two years later.  I'd find a doctor who would treat my symptoms rather than go through the lip thing for possibly no reason.  On the other hand, knowiing all the pros and cons, if you feel strongly about this, obviously you'll go ahead with it.  Best of luck with your decision.  Lucy

[forest]

Yes eyeamdry... my last post is based on where my personal experience is taking me... I cannot give advice either as I am not medical trained.

forest

[Patze]

Hi Christy,

Ah the biopsy, this is one of my "hot botton's" as it were!  Lucy has made some good points, the test is very subjective and it depends on how well the doctor does the procedure and if the lab has seen enough samples to even know what they are looking at.  

Sadly to say, some doctors shouldn't be doing the procedure, period (I wound up with one of these doctors - an ENT too).  And I don't know if the lab saw many of these samples at all, but when they said that my sample was negative, but I had some infiltration, I'm still scratching my head over that one.  I could be wrong, but I thought that infiltration was the name of the game with a lip biopsy sample?

Now remember, a lot of the members that have had them done have had no problems with the procedure whatsoever, and healed as expected.  With a few of the others, not so good (like Lucy and myself).  

Good luck with the procedure if you have it done, and keep us updated, okay?

Oh, I'm also sero negative for SJS, but I'm lucky as the rheumy is treating my symptoms anyway.  Will your rheumy treat your symptoms without the positive blood work?

Take care -

Patze

[seren]

Hello Christy,

I had only ever had 2 pos. ANA's one wth a 'speckled pattern' all other bloodwork was negative, not sure if that makes me seronegative?? Anyway I had a lip biopsy almost 5 weeks ago and it was uncomfortable lots of pulling etc and only a bit painful afterwards, certainly not as bad as I was expecting.  My only problem and I don't know if this is permanent (hope not) is that my lip is still suffering some numbness and I have a biggish lump where the scar is, I am seeing the maxillofacial surgeon on thursday, incidentally my dentist rang their office and I was told I was positive for SjS with mild to moderate lymphocytic infiltration...I am seeing the rheumatologist on Monday I hope he agrees.

I think if I get a definite diagnosis out of this (it seems I have?) then I would say it seems worth it, but I am very unhappy if I suffer permanent numbness...its a difficult call for you to make  

Hope you get it sorted  

Paula

[Patze]

Hi Paula,

I know what you mean about the lump, miserable, isn't it?  Mine took several months before it finally disappeared (and yep, I used ice all the time - didn't help much as I have a lot of swelling issues anyway).  I know that some of the other members only had some minimal swelling that went away in a few months time, and I hope that yours also disappears soon!

About the numbness, I sure hope that you're with the many and the sensitivity comes back like normal really soon.  My numbness never went away, and it can be frustrating at times, but I've gotten so used to it that I don't bite my lip as often anymore.

Hang in there, and I hope that you heal soon!

Take care of yourself -

Patze

[ccfbarb]

Hello Christy,
Lots of stuff to consider when deciding on a lip biopsy.  I was totally surprised to see how many people had bad experiences with the procedure!  I had mine done about 4 yrs. ago by a pediatric ENT (just because he's so good and a friend) and I had very little discomfort, minimal numbness in my lip and a positive diagnosis, when everything else was coming back negative.  I believe the diagnosis was the biggest factor for me.  Now I can be treated properly and I could finally put a name to my disease.  Hope all goes as well for you if you decide to go ahead with it.

Barb

[seren]

Aw...Thanks Patze, hope I'm not one of the ones that has it permanent too (sorry that you do)!

I will post once I have the official results...which hopefully will be monday.

GodBless
Paula

[TerriJ]

Chris,

I had a positive ANA and an Anti Ro of 448.  My eyes tested dry with the Schirmer's test.  I kind of pushed the rheumatologist I see at a nearby teaching hospital to do a lip biopsy.  He said he didn't want to put me through it because even if it came back negative he would still stick with his diagnosis of Sjogren's.  I know some doctors say you must have a positive lip biopsy.  The rheumatologists I see do not necessarily specialize in SS.  I would kind of like to see someone who does.  I have a lot of CNS symptoms.  Nothing has really showed up in my neurological testing though and MRIs.

Hope all goes well for you.

Terri

[eyeamdry]

Knowing what I know now, I would raise a hairy fit if a dr insisted on a lip biopsy with positive bloodwork.  A lot of butchery for nothing.  Lucy

[chrisgirl]

Thanks for everyone's input.  I go back to the neurologist on the 23rd and I will talk more with her about it then.  I would choose to forgo it, but the rheumy will not put me on any meds to slow the Sjs without a positive result.  will let you all know how it goes if I have it done. 
Thanks again!
Christy

[anita]

Christy,

I can only had one more opinion, but here goes.  There is nothing saying you can't ask the facility doing the biopsy how many they do and whether they use the Greenspan scale (which is highly recommended).  Patients don't question the doctors or other medical professionals nearly enough.  I don't think anyone would be offended with inquiries about their experience, etc...frankly it's the only way to make informed decisions.  The Greenspan scale is based upon the number of infiltrates...and scaring present.  Mine was done at Johns Hopkins.  It was positive.  However, like many posts here, it left me with numbness and a lump.  There is risks with all procedures, so you have to weigh the risks with what you intend to gain from the results.  I am sero-negative, but Shimmer's was grossly positive, so they felt they needed the biopsy to confirm.  If he plans to treat regardless of the result, then you could try the treatment...if not effective, then you could always look at the biopsy for a future tool. 

Good luck with whatever you decide.

Anita

[Billydude]

I'm seronegative but was confirmed via a lip biopsy.   I didn't have any trouble with the biopsy but if you do have it done make sure its by someone that has done tons of them and knows what they are doing.     As someone earlier said its really a "hot button" issue with many differing opinions.   Its often said that the lip biopsy is the hallmark for diagnosing Sjogrens.  Since mine went well I lean more towards the "have it done" side.
Steve

[Patze]

Hi Lucy, "raise a hairy fit"?  Now that's a classic phrase if ever I heard one!  Mind if I use it now and then?  

Hi Steve, I believe that the biopsy should go the way of the dinosaur until a strict standard is set in this country.  And in my humble opinion, I can understand why the US is one of only a handfull of countries that even does this test - it's unreliable as it currently stands.


Patze