Lower Lip Biopsy 2018
Posted , 13 users are following.
I too had a lower lip biopsy recently to test for Sjogren's Syndrome. I experienced the same symptoms after my surgery. Such as very numbness, tingling, burning and nerve damage. My lip feels like an alien. I can't move my bottom lip to the left that's why I believe I have nerve damage. My ENT surgeon did not tell me of all the risks. He only told me 1 risk I might get a cyst. If he would if told me I will have extreme numbness and nerve damage I would of never got a lip biopsy. It's been 3 weeks and I still have numbness. The bruising and stitches are gone. Pain still there especially if I accidentally bump my lip hurts like hell. Also I have a feeling my ENT never done a lip biopsy. He should of told me it his medical duty to inform me of everything. I tried many times to see my Surgeon but he keeps canceling my appts or not in the office. Im gonna take it upon myself and see an Neurologist to see for sure if I have nerve damage. And if nerve damage is the case I'm suing. Does anyone knows how long will this numbness last? I feel ruin and regret it big time for getting a lip biopsy. If you are considering don't do it...it ruin my life. I can never wear lipstick again. By the way my test results is negative.
1 like, 22 replies
diane03050 Vette1
Posted
Make sure you didn't sign a paper that said it may cause nerve damage. I had my Mastoid remove the surgeon did tell me in the signature for surgery it says in small print also there may be nerve damage.. So he may have not told you but it maybe in the surgery paper consent you signed
chris08587 Vette1
Posted
I am very sorry you had such an awful experience. My rheumatologist discouraged me from getting the lip biopsy. Please tell me why it is so important to most on this site to get an official diagnosis of Sjögrens.? Please don’t beat me up for asking this question. I feel like s**t. It sucks but all I can do is try my best to treat my symptoms. I’m in the middle of a pretty bad flare so possibly I’m not understanding things well. Anyhoot. I wish you all well.
lily65668 chris08587
Posted
I totally agree, Chris. It mystifies me too - and I have been slightly beaten up for asking the question in the past! But no hard feelings...
The last time I saw a rheumatologist was about 13 years ago - 10 years after getting my first Sjogren's symptoms. She ordered a blood test, on the results of which she gave me a probable diagnosis of Sjogren's. I never got a copy of the results myself, so have never known exactly what she found. All I do know was that my then-GP had found high levels of anti-salivary gland antibodies in my blood (hence the referral) and that I continue to show these, plus high CRP levels and white blood cell counts, on an intermittent basis to this day. The rheumatologist didn't even discuss it with me, just told me a lip biopsy was the essential next step, and gave me a letter for an oral surgeon.
Being naturally curious - not to mention bloody-minded - I went away and researched lip biopsy, and came to the conclusion it wasn't essential at all for me. Quite apart from the possible after-effects, I was pretty sure it would come back negative anyway, as I didn't even have a dry mouth at that time, in spite of my blood results. Severe dry mouth had been my first-ever Sjogren's syndrome, 10 years earlier, but it had largely resolved in under a year and has only been an occasional problem since then. My dentist tells me I seem to produce less saliva than the norm, but that's only on an observational basis, when he's working in my mouth. He says I am producing enough to keep my teeth healthy, so that's OK by me.
And that was that. I never saw the rheumatologist again, and never did get a formal diagnosis of Sjogren's until a few weeks ago - 23 years on from my first symptoms. That was when an ophthalmologist uttered the S-word when he found zero tears in both eyes on the Schirmer test.
The condition of my eyes bothers me very much - especially as he told me I couldn't have the cataract op I need on one eye because of the dryness - but I don't feel that the lack of an official diagnosis for all these years has impacted on me at all.
I think there are various reasons for people going ahead with lip biopsy, the main one being that - like me - they're told by their doctor that it's required. (And unlike me, never pick holes in their doctors' advice.)
Another is that people with very severe symptoms might prefer to have aggressive treatment. Opinions vary among rheumatologists, but I know a lot of them aren't prepared to prescribe immunosuppressants or long-term steroids without firm evidence from a lip biopsy. There's also the point that in some countries medical insurers won't cover such treatment without hard evidence. I suspect that may be the case in my country, though I've never researched it.
Also, don't forget that only people with the worst experiences tend to turn up on any patient forum, which can skew the evidence. It could seem from this thread that people have more negative than positive experiences from lip biopsies - and certainly ditto over on Megheart's methotrexate thread which you may have been following. However, this doesn't necessarily mean much. For all we know, there could be hundreds of thousands of individuals out there who had a trouble-free lip biopsy (or who have no side-effects from methotrexate) so have never felt the need to post in a forum.
As I always say, I think we all have to do our own research and make our own decisions. I value the opinions of my doctors - especially my current GP, who's something of an expert on AI conditions - but I always figure it's my body so I'm the one who has to make the final choices!
chris08587 Vette1
Posted
You seem to me like a vary wise sage and I can't thank you enough for not putting me down for my questions. I feel like s**t. so sick of it. Regarding a lip biobsy. i would never do it. even wih a positive result, my reumy told me that it is not conclusive. Whatever that means. All I know is I feel like s**t ad guess I am having a flair. Thank you very much for being kind to me.
Lu2021 Vette1
Posted
Hi @Vette1, just wondering how you are now 3 years later as I had my lip biopsy 5 weeks ago and am experiencing everything you mentioned. I wish I hadn't had it done. I already have enough other health issues... oh and of course the lip biopsy was negative!
Lu2021 Vette1
Posted
Hello , just wondering how you are now 3 years later as I had my lip biopsy 5 weeks ago and am experiencing everything you and the other two posters in this thread mentioned (tingling, numbness on side of lower lip and swelling inside). I wish I hadn't had it done as I already have enough other health issues and didn't need one of the few body parts that was fine to ow have issues.. oh and of course the lip biopsy was negative
monica21787 Vette1
Posted
I had mine done 2 months ago. same issues with the numbness only its not painful. my test was positive so i did need to do it but I was not aware I would stay numb.