Author Topic: Your experience with the lip biopsy procedure  (Read 468 times)

Deseree

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Your experience with the lip biopsy procedure
« on: October 24, 2018, 05:19:34 PM »
Hi everyone, my doctors and I have been struggling to get IMMCO to send the "early Sjogrens test". I have been waiting literally over a month to have the test performed, and both my doctor and I have received multiple explanations from IMMCO, yet neither of us have received the test kit they have supposedly sent. My doctor suggested the lip biopsy instead, and I'd like to know what your thoughts are on this? Does it damage your ability to produce saliva even more? Does it cause nerve damage? I've heard horror stories and I'm scared to do this procedure unless it's absolutely necessary. Thanks!
30 year old female
No diagnosis as of yet. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.

irish

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Re: Your experience with the lip biopsy procedure
« Reply #1 on: October 24, 2018, 06:07:52 PM »
I did not have any trouble. It is best to have ENT docs preferably as they probably do more of the lip biopsies. However, it is also wise to ask our doc how many they have done as it takes experience to do this procedure correctly. Because there is this new test out I would advise to wait for it to come. Keep bugging the people who are to send it to you.

There are enough people who have some stories to tell about their lip biopsy plus, it is not an emergency procedure that needs to be done ASAP. Waiting days or weeks won't make much difference because you should be having your symptoms treated anyway. I had to wait 39 years to have my lip biopsy and get diagnosed.  I knew there was something serious wrong but a whole bunch of docs didn't believe me. Hope all goes well for you. Irish

markt

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Re: Your experience with the lip biopsy procedure
« Reply #2 on: October 25, 2018, 07:12:10 AM »
I did this at Hopkins.  The ENT verbalized the whole procedure as she did it with her fellowe in training.

Basically the fold your lip over, inject with lidocaine (feels like a pinch), and the rest you don't feel anything.... this is where they make a small incision to collect the tissue sample.  It is typically taken from the middle part of your lower lip (where the minor salivary glands are).


It amounted to a tolerable pain (on the level of a pinch) for about a week.  The dissolvable stitches kind of came out over the following 3-4 weeks from what I remember.  I remember the weird sensation of the loose stiches against my lower bottom lower gums...

All it all... it was a necessary evil.  No loss of feeling occurred from it, I can barely feel the incision spot with my tongue now... so little/no scar tissue.

Who interprets your sample does matter though.  Recommend it be a learning institution like Hopkins or Duke University if possible, as they just know the nuances... even from samples that would ordinarily be undeterminable to other folks.

happylife

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Re: Your experience with the lip biopsy procedure
« Reply #3 on: October 25, 2018, 09:09:51 AM »
Its too early in your case to go for lip biopsy.

Even if you have sjogren, in this very early stage lip biopsy can come negative.

Get your early sjogren test which is less invasive and more dependable in early stage.

Get rps inflammadry eye test done which is easy and quick and a good indicator of sjogren.

markt

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Re: Your experience with the lip biopsy procedure
« Reply #4 on: October 25, 2018, 09:55:52 AM »
Disagree with the too early statement...

I received early diagnosis with the lip biopsy.

It may not show a high foci score with lots of aggregates/infilatrate... but even if it shows just enough in the right pattern... it's enough to signal that there is an immune reaction and loss of tolerance within the salivary gland epithelia.

Don't wait for it to get bad, only to go in and get a biopsy and get late treatment.  If there is enough suspicion (i.e. tests that happylife mentioned) along with obvious symptoms.... I'd let them proceed to biopsy.  It's well justified.

For what it is worth, my disease onset was Aug 2017.  My lip biopsy was in November of 2017, followed by diagnoses in December.  You really don't have to wait for time to pass to tell what is going on.   


« Last Edit: October 25, 2018, 09:58:07 AM by markt »

Deb 27

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Re: Your experience with the lip biopsy procedure
« Reply #5 on: October 25, 2018, 02:10:59 PM »
I was diagnosed with a lip biopsy because my SSA and SSB were negative. I was SO relieved to get the diagnosis because so much else was just "iffy" I had a weakly positive ANA, high sed rate.

My experience was not bad. He took two little saliva glands out and the incision was small. It was uncomfortable for about a week. I had a little numbness for a while afterwards of the incision but it wasn't a problem. Well worth getting my diagnosis. I would talk to the doctor who is doing the biopsy first or his nurse so you are completely comfortable with whoever is doing the procedure. It should be a very small incision, like 1/4-1/3 of an inch. I have heard of some bad experiences and there is no excuse for that except incompetency.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.

bluegardenia

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Re: Your experience with the lip biopsy procedure
« Reply #6 on: October 25, 2018, 03:38:43 PM »
i had two lip biopsies because all the doctors I had seen did not believe I had sjogren, my eyes were dry, schimer test that I made many times , sometimes was 0 and 2 sometimes up to 5 and 7 but I was sure that something was wrong. I had anti ana slightly positive and rheumatoid test also slightly positive.
I insisted I wanted a lip biopsy and I was terrified, did not sleep for days and  was histeric. well I did not feel anything, no pain  at all, a little discomfort afterwards but I put some ice and took a pill for a couple of days. no scare no odd sensations. lip biopsy came out negative.
 sensations  of dryness went on , one day my mouth was completely dry  so  I wanted another lip biopsy, two years had passed, I was less scared but quite anxious anyway. things went on like the first time but lip biopsy came out positive.
 don't worry about the operation but go in a place where they are used to do it, good luck
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

irish

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Re: Your experience with the lip biopsy procedure
« Reply #7 on: October 25, 2018, 10:49:04 PM »
The other issue with having a lip biopsy done in the early stages of Sjogrens is that much of the time they come back negative. This is always discouraging and so many doctors will then decide that just maybe you do't have Sjogrens. Quite a few people on this site have been very discouraged when their lip biopsy came back negative as they were depending on it to be positive and make a huge difference in their treatment.

Just to let you know that sometimes docs will have the lip biopsy done in a surgical suite with all the equipment, etc. This is really an unnecessary expense. I had mine sitting on the edge of the table in docs office. He injected novacaine in the inside of the lip and left the room for 5 minutes or so. Came back, used a scalpel to slice off the needed tissue and then stitched it up with a few stitches. It is knowing where to take the biopsy and how deep to go that counts. The goal is to get the little areas with lymphocytes. And, yes, it is very imporotoant to have pathologists who are good at reading these biopsies. Also, my stitches dissolves in 4 days and I still healed up without any nerve pain.

I had a swollen lip fr a couple of days and put ice on it a couple of times and took a tylenol. It was no big deal. Most important is to ask your doc how many of the lip biopsies he has done and also how often he does them. Have to do them often enough to keep up the skills. Having a positive diagnosis didn't change my treatment but it shire took all my docs my surprise as they never even guessed that I had Sjogrens. I knew I had some darn thing. Good luck, Irish

Deseree

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Re: Your experience with the lip biopsy procedure
« Reply #8 on: October 26, 2018, 12:38:56 AM »
Thank you everyone for your comments! I will keep everyone posted on what happens over the next couple of weeks. I am still trying to get the early test performed, but each day that passes with no word makes it seem less likely that IMMCO is ever going to send it to my doctor's office.
30 year old female
No diagnosis as of yet. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.

irish

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Re: Your experience with the lip biopsy procedure
« Reply #9 on: October 28, 2018, 12:33:38 PM »
Mu thought is that IMMCO is overcome with orders for the test. I bet every patient and doc that have heard about it want it. Good luck. Irish

Judes

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Re: Your experience with the lip biopsy procedure
« Reply #10 on: November 01, 2018, 04:12:32 PM »
I can relate to all the concerns expressed here. I am scheduled for a lip biopsy Monday and I am terrified. The scary thing is I don't know if I'm more afraid of a negative or positive result?

Judes

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Re: Your experience with the lip biopsy procedure
« Reply #11 on: November 05, 2018, 11:40:10 AM »
Well I just had my lip biopsy a couple hours ago. The numbing is just starting to wear off and I can feel a bit of burning and throbbing. The procedure itself wasn't too bad, only bad part was the shot to numb it. She retrieved 7 or 8 salivary glands, stitched me up and said it takes about a week to get results. I go back on the 13th for results. I will be on pins and needles until then.

I had read this article before going in for the procedure, and was relieved when she told me she's done several of these procedures and only does it with linear incision and not a punch! Beware of the punch! https://www.ncbi.nlm.nih.gov/m/pubmed/23838523/ 

I'm still not sure if I'm more worried about it being positive or negative? If it's negative I'm afraid I will not get the drugs needed to slow the progression and that worries me because I am pretty certain I have it. I have all the symptoms and I have Raynauds. So clearly something is going on. If it's positive it is also a scary thing I'll have to learn to face, like the rest of you. This forum has been quite helpful getting me to this point so far. Appreciate all the knowledge here.

Deseree

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Re: Your experience with the lip biopsy procedure
« Reply #12 on: November 05, 2018, 12:11:50 PM »
What type of doctor did your lip biopsy? If I decide to do this procedure, I want to make sure the person doing it has a lot of experience and that the right people interpret my results. I live in Arizona, and I can't seem to find any "experts" on this condition and I'm seriously considering travelling to Johns Hopkins if my Early Sjogren's test comes out positive.
30 year old female
No diagnosis as of yet. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.

Judes

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Re: Your experience with the lip biopsy procedure
« Reply #13 on: November 05, 2018, 12:19:40 PM »
Hi Deseree, it was done by an ENT doctor who actually specializes in plastic surgery. She told me she's performed the procedure many times. Hoping the lab technicians have too.

bluegardenia

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Re: Your experience with the lip biopsy procedure
« Reply #14 on: November 05, 2018, 02:01:55 PM »
hey Jude how was the procedure?
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds