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.
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 :)
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done and wouldn't. In New Zealand, where I live, they don't do them because they are highly unreliable, too risky and outdated.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)
:) 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
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
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
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....
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
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
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 :)
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
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......
Quote from: baddabingtim on January 27, 2009, 06:22:01 PM
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 :-X
Cheers Lesley (NZ)
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
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
Hi Calli, very well put :)
Cheers, Lesley (NZ)
Calli- my eyes were first to go dry. They started with Lasik surgery. I was diagnosed with Sjogrens 7 years after the Lasik. I think my mouth started to become dry about a year or so before I was diagnosed. My lips started becoming numb even before I noticed mouth dryness.
I believe the docors do not know what they want, all seem to expect something different from the test. I was dreadfully sick just prior to the lip biopsy and the first rheum did not take ALL THE RIGHT BLOOD TESTS so my tests showed nothing. They insisted on a lip biopsy which they said was "normal" too. Within 2 weeks of that, I had gone to my University of MI hospital and they had positive blood tests because they knew which ones to take.....and said the very same lip biopsy report was indicative of Sjogrens. So, my lip biopsy was done for no reason. I'd like for one of them to have their lip chopped on. I could actually feel the doc snipping at the tissue with his little scissors. Lucy
im in same position here, ive now come back as seronegative, but i have all the symptoms are some, so im awaiting rheumy and hoping against hope they ll say SJS and not make me go throught he lip biopsy , just have to await that outcome, id appreciate you letting us know how its all going for you
T x
I saw another rheum yesterday (waited 3 months because they cancelled my 1st appt. the day before).
The parade of indifferent and ignorant people I keep seeing who call themselves medical professionals.
No one had my med records (either never sent or they lost them 2 months ago) so I had to recite from scratch everything again. This doctor said, well, most of the bloodwork is negative, so you probably don't have Sjogren's, we can only do a lip or brain biopsy to find out. I asked who was someone good that she sent people to for that.
The response was she sent them to this ENT, and she didn't know anything about him, because she was new to the area. Might be good or not, didn't know. I said that I understood that the success of lip biopsies are often dependant on who interprets them , and many people are left with permanent damage such as a numb lip.
Her response was : "You say your face is already numb, so it won't matter much, will it?"
>:( >:( >:( >:(
Falls under the heading Run Do Not Walk To The Nearest Exit!
Ruby
allium
awful it is ,feel it for you, being sent to rheumy now myself, and will have to wait likely on the you ll need a lip biopsy crap as well, ah well it will bne what it is
T x
Hi allium, some Dr's get so arrogant when you ask them questions and they don't know the answers. Some don't like it when you've researched a topic and know as much or more than they do about it!
Your specialists comments were totally inappropriate and ignorant and should be reported. I can't believe the nerve of the woman...she needs telling a thing or two >:( I'd certainly go to another Dr and refrain from having this procedure!
Take care Lesley (NZ)
Thanks everyone, sorry. Didn't want to make this thread about me.
Just a confounding situation; she seemed to have some Sjogren's knowledge, but was cold and blase toward me. If you might know that this procedure is potentially damaging, why WOULDN'T you make an effort to direct your patients to the best care possible. Otherwise, what is the point if it's not done correctly and hurts someone. You still have no results that are helpful.
And you are right, Lesley, very inappropriate and cruel thing to say.
There are a shortage of Rheums in this area, and the good ones won't see you unless you have three heads with snakes in your brain(s). You are left with the newbies and the bottom of the barrel to struggle with. But that means they get away with it. I could call myself a Rheumatologist and have 100 patients tommorrow.
Just one more note; my dentist is also my longtime neighbor and has tried to help me. He has suggested an oral surgeon that he trusts, but that doesn't mean that they know squat about lip biopsies. Ask you dentist, too if you can.
I appreciate all of your support.
Sheila
Hi Sheila,
Like Ruby said, did you run like heck out of there? Dang, shortage or not, there is no way a doctor should say something like that! What part of the country are you in if you don't mind my asking?
Patze
Hi Patze, how are you/
It was at the very end of the visit, after me telling her everything that I had filled out on the intake forms (hadn't read them either). Her contribution of her expertise was that since I had no pos. bloodwork, the only way to tell was with a lip biospy. Hence my comments, then hers.
She had also said that she thought it was all in my brain perhaps.. not sure if she meant my "head", as such (not a native of this country).
I am in the great wilderness of western NY state, near Rochester. Which has a large teaching hospital that seems to want hip replacemant, lasik surgery, and curable cancer patients, not people with strange conditions they have to work at to help.
I am so willing to go elsewhere for help, but don't know where.
Hi Sheila,
Have you by chance posted on the Looking for a Doctor section? Please post if you wish, and hopefully a member will be able to respond with a name of a different doctor.
Patze
Hi there again allium, an oral surgeon sound like the person to ask, after all they deal with mouth issues all the time.
Last August my youngest daughter Briar 21, got hit in the mouth with a hockey stick which chipped her 2 top teeth, pushed her 2 lower ones back and split her inner bottom lip down to the bone :( The oral surgeon was wonderful...she had 14 stitches in her inner lower lip, he realigned the bottom 2 teeth and splinted them and fixed up the 2 upper front teeth and splinted them as well. As careful as he was, Briar still has a largish numb patch on her inner lip (I guess that's reasonable after an accident like that and with 14 stitches). This guy knew his stuff and he knew all about the nerves placement etc and answered all our questions, showed up pictures and drew diagrams etc :)
My daughter plays hockey at a competitive level and she's also did a coaching major from University. She works at a Hockey Stadium. Her new mouth guard is being specially made by the oral surgeon as well. Anyway this is off-track, but you see what I mean about a good Oral Surgeon :)
Good Luck, Lesley (NZ)
Patze, I will try to post about a rheum or neuro within a doable distance. There might be some lurkers out there on this board that are situated near me.
Lesleyjoy, thank you for sharing daughter's experience; sounds like she's quite an athlete!
Anyway, I don't know if all this stuff about me has helped Shelly with her question, but perhaps it shows there are varied results with this procedure.
Ask, ask, ask around.
I am waiting on this one (and NOT returning to this abusive boob, either).
Now I'm confused ... Allium, you say that 'good' rheumies in your area will only see you if you have 'three heads with snakes in your brain(s)'. So what's the problem? Surely you're the perfect fit?!
Chana xxx
:o :o :o
:P
(artist's rendition of what Allium's heads may appear as)
Hi Allium,
That's a good rendition! :D
Patze
just get the biopsy - it does not hurt and will put your mind at ease
allium, I had the lip biopsy when in fact my rheumy(who turned out to be worthless and is no longer employed by me) suggested it and my ENT said "no way" did I have sjogrens. He did a good job. It healed and he knew what he was doing and what he was looking for. It was positive and he darn near fainted!!!!
Bottom line is: find doctors who treat you for your symptoms and do periodic blood work cause chances are you will eventually turn seropositive as I did. Make sure getting the right blood work done. Actually, many people are treated without positive blood work or a lip biopsy on the symptom basis. Some docs are even treating with Plaquenil when people are having lots of joint and muscle pain plus fatigue. If you feel better that is the important thing.
Be aware that not all people with sjogrens have dryness issues right away and some hardly at all. Dry eyes were the last thing I got after having issues for 40 years.
It is my humble opinion that rheumatologists come in many forms. Some only look for Rheumatoid arthritis and fibromyalgia. They don't like the burden of getting too involved in issues that are complex and demand a lot of thinking. The one I had was like that . I went to her for 1 1/2 years and it was a useless endeavor. The last time I saw her she complained that I took too much of her time with all my "complaints". That was the last trip to see her.
I would think that she was somewhat surprised to get info from my infectious disease doc about 1 month later explaining that I had a form of noncontagious TB that needed one year of treatment. And then she may have raised her eyebrows when she got info from my immunologist months later stating that I had myasthenia gravis, hashimotos and low t cells. Well, excuse me for complaining!!!
I am having a sarcastic streak this weekend! :P :P It takes all kinds and some of these "ologists" are definitely one of a kind. Irish ;D
Hi Irish,
How right you are...some "doctors" should not be near patients, no matter how intelligent they may be. Oh yes, the "you're taking up to much of my time" routine, where do these doctors come from? Mars (no offense meant if you are from that wonderful planet :D)? ::)
I'm so glad that your biopsy went smoothly, I swear the ENT that did mine was just looking for a paycheck, and it did hurt (for a couple of weeks since I wound up with silk stitches instead of the ones that dissolve). Thankfully most people that have it done, have decent doctors who know what they are doing, and have few if any problems. And it's so sad that some labs just don't see enough samples to do a good reading. I'm still trying to figure out why some infiltration is an inconclusive/negative response? I won't do that test again.
And I so agree, some of the "ologists" are there for the easy to diagnosis, not the slow to develop whatever may be lurking.
Take care -
Patze