Update on my lip biopsy
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I finally had my f/u appt with my ENT surgeon today. I explain to him all of my complications from my lip biopsy. Such as extreme numbness, tingling, burning and possible nerve damage. He said he 100% sure I don't have nerve damage . He said when he did the lip biopsy the location was not near the nerve. But he doesn't know why I'm having these complications. He said he did several lip biopsy for cancer not for Sjogren's Syndrome. But it's the same incision. He also said my muscle is working fine since I can move my jaw and smile.I ask him can I see a nerve specialist he said no just wait a few months and all the symptoms should go away. I don't believe him I think my symptoms are permanent. I'm still gonna see a nerve specialist next week. After I left driving home I was thinking maybe I might have tissue damage or something. I will give you guys an update then.
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lily65668 Vette1
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While agreeing with your suspicions about the ENT - who's obviously going to cover himself - I still think you're worrying a bit too soon. Any wound to the lower lip causes problems that can take months or even years to resolve completely. He should know that, and should have warned you about it first. The rheumatologist who referred you for lip biopsy should have warned you too.
I'd suggest waiting at least a few more weeks before blowing your insurance cover on the neurologist. Even if the nerves had been seriously damaged, there'll be nothing he could do about it in the short-term, and you'll almost certainly be told to "wait and see". (I'm a former neuro nurse btw.)
And yes - you do have tissue damage. You can't have any kind of surgical procedure without the tissue being damaged. But damaged tissue heals, and that includes most damage to peripheral nerves. Nerve damage is slower to heal though. As I mentioned in an earlier post, after my two lip injuries the tingling, burning, numbness etc. went on for months after the cut had healed. But it did eventually clear up, as did the hard lump that was left behind on both occasions.
OK, the last fall was just 22 days ago - not long after your biopsy - and I'm still suffering quite badly from all the unpleasant nerve sensations and the painful lump in my lip. However, I know from the experience of my previous, much heavier, fall two years ago that this will all clear up in time.
I think this all comes down to the ENT not giving you sufficient warning about the possible immediate after-effects of the lip biopsy. A lot of doctors, in whatever speciality, do this kind of thing, and it used to make me so angry back in my nursing days. The rationale is that if you tell the patient they might have after-effects (or side-effects of medication) then they'll immediately imagine they have them. It never seems to occur to these elite men of science that if you don't warn people about after-effects and then they get them anyway, they'll panic and think something's gone wrong!
diane03050 Vette1
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Vette1 diane03050
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MY TEST RESULT ARE NEGATIVE. SINCE MY BLOOD RESULTS WAS NEGATIVE MY ENT SUGGESTED THE NEXT TEST IS TO SEE IF I DO IN FACT MY SS IS A LIP BIOPSY SINCE I HAVE ALL THE SYMPTOMS OF SS. THERE'S ONLY 2 WAYS TO GET A POS OR NEG FOR SS. I EVEN HAD THE EYE PROBLEM THAT COMES WITH SS. I WAS SURPRISE IM NEGATIVE, ALSO AFTER MY SURGERY I RECENTLY DID SOME RESEARCH ABOUT SS. I FOUND OUT THERE ARE 20 DIFFERENT DISEASES THAT HAVE THE SAME SYMPTOMS AS SS. SO I BELIEVE MOST FOLKS THAT GET TESTED WILL HAVE A NEGATIVE TEST RESULT. I WISH I WOULD OF KNOW THIS STATISTIC BEFORE I GOT THE LIP BIOPSY. I DID SO SOME RESEARCH BEFORE MY SURGERY BUT I DIDN'T FIND ANYTHING THAT SAID IT'S BEST NOT TO GET A LIP BIOPSY. ALSO A LOT I MEAN A LOT OF DR'S DON'T KNOW ABOUT SS. BEFORE I SEEN MY 2ND ENT I'VE SEEN AN ENT AND A GP DR THAT NEVER HEARD OF SJOGREN'S AND DIDN'T KNOW MUCH ABOUT THE SALIVA GLANDS. MY ENT DID KNOW A LITTLE ABOUT IT AND SAID THEY DON'T TEACH STUDENTS ABOUT SS OR SALIVA GLAND IN MED SCHOOL. WOW I WAS SHOCKED.
lily65668 diane03050
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If I can hijack this one: it all depends on who your doctor is and which country you're in. There seem to be no absolutes about a final confirmation of SS.
I gather from tumtum (I think) that a positive lip biopsy is considered essential for a diagnosis of SS in the UK, but this isn't necessarily true in other countries, where it may depend on which specialist you see.
Here in Belgium, I was given a an almost-certain diagnosis of SS by a rheumatologist 13 years ago on the basis of blood inflammation markers. However, she said I couldn't get a definitive diagnosis without a positive lip biopsy, and gave me a letter for an oral surgeon. I went away and did my research - following which I tore up the letter and never went back to the rheumatologist. I've been managing the individual symptoms ever since.
However, about three weeks ago an ophthalmologist found I had zero tears in both eyes on the Schirmer test and gave me an unhesitating diagnosis of Sjogren's. I asked where the lip biopsy came in and he said that was rubbish, you didn't need a positive lip biopsy or even positive blood markers if you had zero tears.
So... I suspect it mainly comes down to which type of specialist makes the diagnosis.
If that's not already confusing enough, consider that there are plenty of people on these boards who have all the symptoms of SS, but negative lip biopsy and blood tests! And of course, the lip biopsy and some of the blood tests can be positive in conditions other than Sjogren's.
Confused? Join the club!
diane03050 lily65668
Posted
TY Yes I had the Schirmer test the other day for first time since Dec 2017 feeling so bad all over from eyes to toes every aliment to this day. Well TY I have went to every kind of Dr's just to see what they say/I don't tell them what I think or other Dr's think to get there opinion/ 4 out of 7 said SS Now I have last apt with Oral surgeon. I will not get a lip biopsy but I want to know what he think of my mouth I have false teeth upper and lower. Dry mouth and thick beige mucus during day and no taste buds with burning of tongue and mouth at times. I do know I have Amalgam. So I will know next week. I would like to know what micro's are seen with the biopsy of the lip .That says SS??? Do you or anyone know that had the lip biopsy or do they just say neg or positive. What micro's or is it bacteria?
diane03050 Vette1
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TY I did have the Schirmer Test My Eye surgeon said it is positive My Right eye was 3 and my Left eye was 5. So the test is positive. The normal is 15 in each eye and above. I have tried 7 Dr's says SS My Rheumo says no and my ENT is the first on who mention this Did to me. My Oncologist says Secca. Now my GP who took every blood work even Lupus was neg. So now he says SS after me proving what it was I didn't stop till I figure what was wrong with me. My ENT said she would do a Lip Biopsy id I want but reading all about Lip Biopsy's I am not doing it I was wondering What exacting does the lip biopsy says What is the medical term of the lump they take out?. What is the test they do? Sorry if I upset you. I am new to all of the since December. I do learn so much in reading on these discussions TY
Vette1 diane03050
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Glad to help Diane.The lip biopsy will give you a pos or neg result. The procedure takes 5 mins. In some cases inconclusive result. 5-6 tiny salivary glands are removed from the inner lower lip. The pathologist will test it. The report will say neg or pos for inflammation and neoplasm. And benign squamous mucosa and minor salivary gland tissue. I'm reading from my pathology test results..It won't say the word Sjogren's Syndrome. Most results are negative not positive so if I was you don't do it you will regret it. The eye test will not tell you have SS and it will only tell you have very dry eyes. If your blood test is neg for SS. Stop there cause your ENT will suggest to do a lip biopsy. Which is very painful after the surgery for days and weeks. I'm 42 and tiny. I found out from Lily on this blog that she said the recovery can take months or years cause of the nerves takes a very long time to regenerate. Most Dr's won't tell this cause they don't want you to opt out or they just haven't been thought in medical School. Like my ENT told me. Also there are 10-20 disease they have the same symptoms as SS. That why SS is so hard to determine by any specialist. I hope this helps in your decision.
diane03050 Vette1
Posted