LIP BIOPSY

[ShellyM]

Hello my RA called today and I have to get a lip biopsy.  Can anyone share their experience with this procedure.  Any information/advice you can give is greatly apperciated.

[Scottietottie]

Hi shelly 

This is a procedure I have never had but I know you'll get loads of answers and advice soon. People's experiences vary and seem to depend on having an experienced doc doing the biopsy.

Take care - Scottie 

[lesleyjoy]

Hi Shelley, Scottie was right, so I'll jump in here and say my 100cents worth! I've never had one done and wouldn't. In New Zealand, where I live, they don't do them because they are highly unreliable, too risky and outdated. Even if your bloodwork is negative (like mine is), I wouldn't be talked into having one done.
Here are some facts about lip biopsies:
*They can show negative for the required number of infiltrates, but you may very well have Sjogrens.
*They can show positive for large numbers of infiltrates and you might not have Sjogrens.
*The procedure can leave you with a permanently numb lip.
So why have something done for nothing, or end up with a numb lip 

Now, the choice is up to you. I know that in America, they are the 'gold seal' or standard procedure to gauge Sjogrens, especially if bloodwork is negative. However, there are Drs/specialists around who will treat Sjogrens based on symptoms alone and this is the best outcome of all. There are other less invasive procedures to check on salivary/lacrimal glands like the MRI. They are more diagnostic in approach if you have swollen glands etc.

Food for thought, I bet you get lots of replies on this one. In one of the Sections on this Forum, you can read about Lip biopsies and peoples thoughts and experiences,

Take care, Lesley (NZ)

[ShellyM]

   Lesley:  I'll take any 100cents worth I can get.  I apperciate the insight.  Thank you for being helpful.  I am still researching everything.  Hugs.  shelly

[allium]

Hello Shelly,

I am also sero neg at this time, and have many Sjogren's symptoms, such as sicca, along with worsening neuro problems.  I had a nuclear medicine test done called a salivary gland scan in which the ejection factor of your saliva is measured with an imaging device.  It basically shows the function of the glands.

My test was borderline neg for SjS (I was 50% and 36%, pos. is 35%), so my current rheum will not consider treating me for Sjogren's.   But, I am leaving a lip biopsy as a totally last resort, for most of the reasons mentioned above.  My face and lips are already numb enough without added help. 

It's a personal decision, but consider asking about what other nonsurgical diagnostic tests you could undergo, like the one I mentioned if you suffer from a dry mouth.

Good luck,
Sheila

[eyeamdry]

Hi Shelley-
I normally try to stay away from posts like this because I don't want to "scare" people away from having a lip biopsy.  However, the longer I'm here, the more I see others who have had problems.  Without a lot of hoopla, I'm left with a cut which left a distinct scar on the inside of my bottom lip.  It's about 1 " long.  My lip is numb and I get electric shocks in the area.

I would not do a lip biopsy again, UNLESS it meant I'd get some fantastic treatment.  It might make sense if your doctor will not treat you if you're sero-negative.  Lesley listed the exact reasons not to have a lip biopsy.  My biopsy was "negative" according to the first rheum I saw.  However, I took the same results to my ophth, GP, dentist, the oral surgeon who did the surgery all said the biopsy report was "positive."  So, this can be subjective according to a certain doctor's reading. 

Lucy

[Mark54]

     Having a lip biopsy is a personal choice. The best advice I can give you, is to check out the Doctor who is doing the biopsy. See what there track record is. My wife had hers done by a Rheumy who has preformed hundreds before. He explain the procedure in detail. It took about 20 minutes. She was as good as new in about a week and can't feel the scar or does she have any numbness or pain. There are a series of nerves in the area of the surgery so they have to be knowledgable. Find a Doctor who knows what they are doing! IT IS YOUR RIGHT TO ASK QUESTIONS.

God's blessings,

Mark....

[ruby52]

Without my lip biopsy I wouldn't have been treated for Sjogren's.Negative bloodwork and symptoms I hadn't put together.I  was lucky and had a Derm. who had done many and knew what was needed for a dx.It was no big deal and I had no problems.I would be much more worried about it now that I have learned of the risks.
                                                                                 Ruby

[sydney6060]

I agree with Ruby.  Without my biopsy my rheumy wouldn't have believed it was Sjogren's.  I've been chasing this mystery down for over 20 years.  It was my decision to have the biopsy.  I needed to have to done so I'd know one way or another.  I had absolutely no problems.  I had a great ENT doctor and except for getting a bit weak, I was fine.  I had 1 stitch that was taken out the next week.  I only had a bit of numbness for about 3 weeks  and you can't even see my scar. 
It is a personal choice, but I'm very glad I decided to have it done.

Good Luck
Susan

[BonusMom]

I had a lip biopsy done as part of the SICCA Study at UCSF.  The biopsy was performed by a dentist and she did a fabulous job.  Swollen for just a few hours, which was helped, I'm sure by the ice packs provided.  I have had  no residual problems since the biopsy was performed 

[Patze]

Hi Shelly,

Ah, this is one of my "hot buttons", but you asked so here goes!   Had you scared eh?  Nope, I won't bore you to tears, I've already done that in other topics about the biopsy - please do look in the mouth section for some previous discussions.

Is your doctor willing to treat you without having a biopsy done (the rheumy I see does treat me and I know that I'm lucky)?  If he is, why have it done?  If not, can you get a second opinion maybe?

Please do ask tons of questions, and remember, it is your decision.  Good luck with it and keep us updated.

Take care -

Patze

[baddabingtim]

I had 2 lip biopsies - one by an oral surgeon - came back inconclusive - not enough tissue - my lip was swollen and blue for a week - second time about 6 weeks later by an ENT - he dug deeper and cautorized the site - hurt like heck - came back negative - I had negative blood work also - my problem is I have dry eyes and dry mouth - even today I take evoxac occasionally - I don't know weather my dryness is physchological or what -

But bottom line is I did what was necessary to get a diagnosis......

[lesleyjoy]

I had 2 lip biopsies - one by an oral surgeon - came back inconclusive - not enough tissue - my lip was swollen and blue for a week - second time about 6 weeks later by an ENT - he dug deeper and cautorized the site - hurt like heck - came back negative - I had negative blood work also - my problem is I have dry eyes and dry mouth - even today I take evoxac occasionally - I don't know weather my dryness is physchological or what -

But bottom line is I did what was necessary to get a diagnosis......

Hi Tim,  so what diagnosis did you finally get and was it one that you're satisfied with? Enough said, you know my thoughts about lip biopsies 

Cheers Lesley (NZ)

[DesignerS]

Hi Shelly,
I was scheduled to have a lip biopsy last month but came down with something and didn't make it.  I am still so torn about it myself that I am no help to you.  However, I do understand how you feel.  My rheum dr. ordered it done by and ENT that he "claims" does a wonderful job.    So, I am in the waiting game with you.  Let us know what you decide.

Designer

[Calli66]

One thing I've always wondered is this: if you don't have an especially dry mouth with Sjogren's, does that mean your salivary glands aren't the "target" of your auto-antibodies? And if that's the case, maybe doing a lip biopsy is pointless. For me---it's EYES EYES All The Time. So maybe the tear duct glands have been infiltrated. But they wouldn't dare do a biopsy there, just to confirm a SjS diagnosis.

My gut feeling tells me that lip biopsies are kind of a crude way of testing a diagnosis, and not necessary. Seems like the decision to do a biopsy is mostly based on the approach to medicine that your doctor has. Some will just not be convinced unless they can see a result under a microscope. Some patients are like that, too---have to have a "name" for it---have to know "for sure." I still don't know how I feel about that.

Calli