Hi everyone, been a while since I have been here, dealing with life's stresses as we all are. I just want to say to those who commented on my post last summer and fall that yes I did get IVIG started last Aug at a very high dose of 45g a day for three days once a month. My Doctor did say it would be a life time treatment. I do get sick from the ivig, headache, flue feeling, but it has helped.
But I do have a question as usual, lol I had my lip biopsy for sjogrens 2014 the problem is my lip is worst now then it was when I first had it done. Drinking, eating, smiling it all bothers it. Anybody else have this happen to them?
I had the biopsy in February and seems to be lucky compared to you. I can still feel a lumpy bit which feels different & sometimes slightly nippy but overall it hasn`t affected me. The result was a border line one so with the dry eye`s & mouth and CNS symptoms they are treating me for Sjogrens.
My lip biopsy is booked in for the 1st July and I'm nervous. I'm not sure what it really involves or how long it takes or what to expect. Does it require a stitch? In what way are you still effected? Is it causing pain? :o
They do cut the inside of your lip area in the mouth and it requires one or two stiches. At least mine did. Mine was done by an ENT and it wasn't too awful. I still have a tiny lump there of scar tissue. Sometimes I accidently bite it, which doesn't help matters. It's gotten smaller over the past few months. I had the biopsy I think in April.
Quote from: Deb 27 on June 15, 2015, 09:31:45 AM
They do cut the inside of your lip area in the mouth and it requires one or two stiches. At least mine did. Mine was done by an ENT and it wasn't too awful. I still have a tiny lump there of scar tissue. Sometimes I accidently bite it, which doesn't help matters. It's gotten smaller over the past few months. I had the biopsy I think in April.
Was it painful for long? Most importantly, was it worth it; did they get a confirmation of Sjogrens? :)
not painful at all but be sure that u will go in a place where they are used to do that.for me it was absolutely not painful, i did not even take a pill afterwards. yes it was useful for me, two years ago it was negative and this year it turned out to be slightly positive so they confirmed sjogren and stopped saying that i was just histeric
Quote from: bluegardenia on June 15, 2015, 10:04:08 AM
not painful at all but be sure that u will go in a place where they are used to do that.for me it was absolutely not painful, i did not even take a pill afterwards. yes it was useful for me, two years ago it was negative and this year it turned out to be slightly positive so they confirmed sjogren and stopped saying that i was just histeric
That's the worst isn't it, people not believing you and feeling you might be a hypochondriac even though you're in pain. What pill afterwards? Do they put you on antibiotics? So you had it twice?! They're sending me to the oral department of dentistry to have the lip biopsy done through the Sjogrens clinic so I'm assuming they know what they're doing! I'm so tired of all these tests, I really hope I don't have to do it twice :o
I had a salivary gland biopsy in Oct. 2013. I went to an oral surgeon at the U of MN. She was an expert at doing the biopsies. She numbed my lip, did the small incision, took out some salivary glands, and put in a couple of self dissolving stitches.
It was not painful except for the needle used to numb the lip (just like going to the dentist). Afterwards, it was sore for a couple of days. Then it was fine. I have no residual pain, numbness, or scarring.
I think the key for a successful biopsy is to go to someone who does many of these salivary gland biopsies. They are adept at doing them, they do the procedure correctly (go into the correct area and get the correct number of salivary glands), and they handle the specimen correctly. Plus, it gets sent to a lab that analyzes many salivary gland biopsies so they know what they are looking for.
My salivary gland biopsy was positive. Even though I also have positive SS-A, I am glad I had the lip biopsy that also confirmed the diagnosis.
I agree with Jasper. I had one back in 2003 and my ENT (highly qualified in twin cities area) did it in the office. I am astounded as to the amount of pomp and circumstance that surrounds this procedure. It is a straightforward and not very complicated procedure. The main thing is to find an ENT who does this a lot. The main object is to take out a certain amount of tissue that contains salivary glands. They don't have to go very deep. A little shot of novacaine in the lip(not terrible but an owey) and wait 5 minutes or so. The doc takes a scalpel and slices out the tissue and places it on a slide that the assistant holds for the doc.
I had 3 stitches. They pulled and hurt and eating was painful at times, but nothing bad. If a person has never had any surgical procedure you might feel overwhelmed by this, but, believe me, it is low on the pain scale. Take some tylenol for pain. The lip will swell and get tight from the stitches. I put a small wet 4 x 4 on my lip for a few minutes and it softened up and drained and felt better. Normally, the lip gets really ugly when it has something that has to heal. There will be a lot of drainage. If it drains and starts to heal without feeling hot and swollen like infection things are going acceding to plan.
My stitches were the dissolvable kind and they fell out in three days. The lip sort of just healed on its own. Get plenty of fluids and drink malts if lip is too sore to eat regular foods.
I think the main thing that can get people is in trouble is when a doc is inexperienced at this and cuts way too deep.There is a trick to doing this and the older more experienced docs are usually better. Ask them how many they do in a month. One a month---ahhhh, don't know if a doc can maintain his technique. Five or so would make me feel better. This is not an emergency and you don't have to settle for second best. Ask around who does the good ones.
I don't know if I would do it again. Mine was positive and totally surprised about 3 of my docs as they did not even suspect autoimmune disease. AS it was, I had a Sjogrens study the folioing year and all my tests and blood tests were positive. Big time positive and yet I did not even have very much complaints of oral dryness (in spite of losing all my teeth) or eye dryness. We are all different and it is a crap shoot. Good luck. Irish
@cari, i tell u that first time i was very very scared but it took 15 min from beginning to end both times, i did not have pain, i did not take antibiotics, i did not take any kind of pill. but i repeat, u must do it with a doctor who made that many times. im sure that the place u chosed is ok: as irish said, its 3 stitches and the trick is that there is no need to go deep so its a superficial cut bec glands are very superficial and they come out easily. but i understand u are scared, we are always scared about things we dont know. believe me, first time i was trembling and crying. i asked to do it the second time bec i wanted to know what was going on and could not bear the idiots comments about my supposed dryness due to my bad character or my nerves...
Everyone here is so kind. Thank you. I'm struggling with all this by myself and it's good to know there is support here. I seem to have hijacked the thread, so apologies. I don't get to choose who does the biopsy as it's done by referral by the Sjogrens clinic so I can only assume they are used to doing this. I seem to be being referred to specialists so for example my ultrasound was with a salivary gland specialist so I'm assuming the person doing the lip biopsy is the same. I need this done because nothing else is coming back with anything. I'm sorry for hijacking the thread and will hand it back to the OP. Thanks again :)
I had a lip biopsy on March 30/14 by a very experienced ENT. He froze my lip and made a small incision to remove the gland. I don't think it took longer than 10 minutes from beginning to end. No stitches. It stung a bit for 2 days - pain-free and essentially healed on Day 3. I have a tiny little 'scar' smaller than the size of a pin head that I can only feel if I consciously seek it out with my tongue. My results were negative. That same day the ENT also diagnosed me with laryngeal reflux and prescribed PPI's, which have now successfully addressed a multitude of problems including dry mouth, pain on the roof of my mouth, sinus issues, and coughing/choking (especially at night).
In my case, the biopsy wasn't half as bad as the 'idea' of the biopsy.
Cari, The fear is always the worst thing. It is good if you can get them to explain what they are going to do. Also, do deep breathing and breathing out slowly in such a way that you can literally decrease your blood pressure and your anxiety. Practice this at home before you go. This is the same thing I did during dental work and other procedures that made me uneasy. If you get your brain in another orbit by using this breathing you can breath through a lot of things. I did this once with an OB patient when working labor and delivery and she delivered prior to the doc arriving and he was across the hall. He was not smiling!!!! And I did not get reimbursed for doing his job. lol Irish
P.S. You did not hijack this thread. You asked some questions that were relevant and a lot of people chimed in. Periodically we get a lot of questions about lip biopsies. They sound a lot worse than they are. Ten- 15 minutes and on your way. P.S. A few people have had a lip biopsy in a surgical room with the sterile equipment, drapes, etc. The mouth is full of bacteria and using a sterile scissors or scalpel plus needle and thread is about as sterile as one needs to be.
Hi Cari,
I live in Bonnie scotland and was referred to a Dental surgeon. The procedure for me took all together 40 minutes and the staff were excellent. The nippiest part as already said were the injections to numb the area. I also did not need any extra painkillers for the pain but then I am already on a steady flow three times a day. They should tell you not to drink hot drinks straight after as the lip is still very numb for an hour or so after.
The worrying about the op is worse than the procedure itself. When they have finished just sit in the chair a few minutes after if possible as you can feel a bit faint but that is very normal so I am told.
Thanks. I'm not afraid, or at least I wasn't until I read horror stories. I just have no idea what to expect and have read of others having nerve damage. I will treat it like a dental appointment, something unpleasant but necessary ;)
IanL - glad yours went well and that they knew what they were doing. I'm going to the Oral department of the hospital via the Sjogrens clinic, not sure if it's a dental surgeon. I'm not on pain killers right now so let's hope it's not too bad. Thanks :)
Susie - Mine healed up but was swollen for quite a long time. Then of course I would bite it and it would get worse. I think that by a year afterwards, it was pretty stable. But now, it's gone - I can't even tell where it was.
If yours is still hurting from just smiling and it has been a year, and especially if it's getting worse, you might want to ask a doctor about it. Sores that don't heal can sometimes cause trouble. Good to have it looked at. And maybe there's a fix for it.
Doesn't seem fair to be hurting from diagnostic procedures on top of all the other garbage. I hope you get some relief soon!
I see you have PN also. I wonder if it is not the PN/sfn causing the numbing feeling in my lip where biopsy was? To be honest never thought of bringing it up at a doctors because I thought it was common among biopsys to have a residue numbing. It does not hurt, is not painful (Ihope I did not say that in the org post) lol but it is this weird, numbness that bothers me when eating and even makes me feel like I can not feel the top lip. I will bring it up Rhuemy apt next month and neuro appointment in Aug for I will hit them both up. So I guess I learned something here thank you everyone, because I did thing it was normal. :P