17 June 2014

Lip Biopsy — What to Expect

Gross photos warning ... pics are small, if you really want to see them close up, click on the pics.

For the last 9 months, I've had constant lower facial numbness and asymmetric swelling of my lips — it may be a sarcoidosis thing. So eventually my immunologist ordered a lip biopsy for me, for joy. Mainly to see if there is any need to increase my medication. It's worth mentioning that every nurse and doctor I mentioned the biopsy to shuddered.

I had the biopsy last week. The oral maxillofacial (OMF) surgeons did a professional job, and were nice guys, but they really didn't prepare me in any way for the recovery period. And any hospital information sheets I found online mentioned 'some discomfort' after the local anaesthetic has worn off. LIES!

So I thought it might help others if I document about what to expect during and after a salivary gland / lip biopsy.

Before

I had an initial appointment with the OMF team a few weeks before the procedure.

On the day of the procedure, I took 10 mg of diazepam — let's just say I was a tiny bit anxious about the whole thing. I started on prophylactic antibiotics, too, but that's unusual — this was because I'm on heavy immune suppression already, and have an artificial hip (which is always at risk from infections). It's not typical for most patients.

During

I was seated in a reclining 'dentist's chair' sort of thing, and given sunglasses to wear (to block out the bright light), and my body was covered by a sterile green sheet. Then I was given three injections of local anaesthetic, into the lower lip, inside, down near the gum — right, middle, and left. They stung a bit, and were a bit painful, but bearable. Then I was left in the chair for 10-15 minutes while the anaesthetic worked its magic.

The biopsy itself took about 15-20 minutes. One surgeon held my lower lip out, and the other carefully cut out 5 salivary glands. Then he put in a row if stitches, which was very neatly done (no cut ends of thread sticking out into my mouth, everything was tucked away nicely). The incision was about 1 cm long, vertical, near the front of my lip. It didn't bleed all that much, either. I kept my eyes closed most of the time, only so much one needs to see of such things, after all!

Immediately After

Very relieved it was over! My lower lip was extremely swollen, not surprisingly, and very very numb (damn good stuff, that local). I was told to avoid drinking anything hot while the local was still working, to avoid accidental burns. I also had an antiseptic mouth wash to use three times a day, to keep the area clean. Easy. Here's what it looked like, after the blood was mopped up.

Stitches on inner lip after biopsy

After the Local Wore Off

HOLY FUCK

After about 3 hours, my dear friend, local anaesthetic, went away. It was not a pretty sight. Let's just mention stumbling downstairs to my children, weeping, unable to speak ... horrific pain. Really fucking awful. About a 9-10 on Allie's Pain Scale.

My son dashed out to buy me some Panadeine (we inexplicably had none in the house), and my daughter looked after me.

This was not 'some discomfort'. This was 'Kill me now, please' stuff. I don't know if the surgeon had cut some particularly important nerve, or if there's just so many damn nerves in the lips that it's inevitable, and I can't say whether my experience is typical or not. You may not have it as bad as this. But ... better to be prepared.

You will (probably) need heavy duty pain meds! You may need a script for something like Panadol Forte (ie something with a fair bit of codeine in it). At least lay in the strongest over-the-counter pain meds you can get. I react badly to opiates now, so it says a lot that the nasty side effects of opiates (the codeine in the Panadeine in this case) were preferable to the pain from the biopsy.

You also need an ice pack. The ice pack is your friend. Wrap it in a cloth. Don't leave it on your skin non-stop, otherwise you risk damaging the skin. 10 min on, 10 min off, that sort of deal.

I spent the rest of the day whimpering on the couch, doped on Panadeine, with an ice pack on my mouth, while my kids tried to distract me with Death in Paradise episodes ... I was able to sip a little milky tea through a straw, and a little soup. No talking, no eating, nothing that involved moving my lips at all. Intermittent weeping.

The Next Day

Could talk sorta kinda, in a mumbly way. Able to eat mushy things (applesauce, yoghurt etc) from a spoon, and tea through a straw. Still on pain medication every 4 hours. And I could tell the instant it wore off. Another not fun day, although not as bad as the previous day. Mostly curled up on the couch, watching TV, or knitting.

Lip looked like this now. Impressive bruise, huh?

Bruise on inner lip


The Next Next Day

Able to talk a bit more, and able to eat a little more, although still sticking to soft mushy things and sounding a bit drunk. The bruise started to 'fall through' to the front of my face. Still needing regular Panadol.

Six Days After the Biopsy

Each day, naturally, things got a bit better. The bruise is a lot less now. I can talk normally, but wouldn't want to talk for too long. My lower lip still feels lumpy and aches constantly.  I'm not needing pain meds any more. Still using the antiseptic mouth wash.

If I tried to eat anything thick (like a bite from a hamburger), it would still hurt a fair bit. Still being careful about chewing. Can't rest my chin on a pillow, for instance, as that hurts  too much. I think the dissolving stitches might be starting to dissolve.

This is how things look now — inner bruise has mostly moved to being an external bruise below my lips :

Lip biopsy, inner lip after six days

Bruise below lips

Two Weeks Afterwards the Biopsy

It. Still. Hurts.


The wound is healing well, and the bruising is all gone. Stitches are starting to dissolve. But it still feels like there's something caught between my lip and gum (which, of course, there is). And it aches constantly. Eating still hurts a bit. And if I talk too much, it hurts more. I can't comfortably rest my chin on anything. And bumping my lip on anything hurts a lot. Getting there, but s l o w l y.

Three Weeks After

It still hurts around the biopsy site, and the surrounding lip area, but the more 'widespread' pain has eased off. Current theory is the surgeon damaged a nerve. They also took out a fair bit of muscle tissue, which makes recovery more painful. Even still, this level of pain post-op is unusual. My immunologist suggested Lignocaine Gel (available in pharmacies without a script) and it's pretty fabulous stuff. Why did no-one mention this stuff to me before??!

Biopsy was all clear, too, no sign of sarc. So we don't know what's causing the swelling, and it's likely it is still the sarc causing it (Melkersson-Rosenthal Syndrome), but they didn't manage to get the right area with granulomas in it ...  dammit. A null result doesn't rule out the MRS.

Four Weeks Later

Was still in pain, so I went back to see the oral surgeon. They removed the undissolved stitches (a horrifically painful procedure, despite local anaesthetic). The theory is that I was reacting badly to the suture material, or my immune system wasn't reacting properly to the suture material (I'm on immune suppressants), so it was just being constantly irritated by the sutures, but my body wasn't able to dissolve them. No sign of nerve damage, thankfully. 

Within a few hours of removal, the whole area started to feel better, and a day later there's almost no pain! Bliss! So this theory seems to be right. 

Moral of the whole sorry tale : if you're in bad, ongoing pain around the biopsy site, go back to the surgeon, much sooner than I did. 

I hope that this might help you, if you have to have one of these horrible things too. Pain meds and ice packs are your friends. Get Lignocaine Gel. Don't expect to do too much for a couple of days afterwards, apart from feeling sorry for yourself. Stock up on mushy foods, custard, jelly, applesauce, yoghurt, ice cream, soup, and so on. It is possible to get inflammation and reactions to the various suture materials. Hopefully you won't be anywhere near as badly affected as I was.

And if the hospital tells you there may be 'some discomfort', laugh in its face, bitterly.

26 comments:

  1. Next time ask to be hit over the head with a brick. The resulting coma might last long enough to see you through the worst of it.

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  2. That is an impressive bruise. I am usually pretty good with pain, I have a fairly high tolerance but you made me wince. I am so sorry you had such pain. And I'm glad you're feeling better. I hope you find out scads of info to make it all worthwhile.

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    1. I have high pain tolerance too, live with constant pain, so I thought I was going to be OK afterwards ... but no ... And yes, here's hoping to whole books of information as a result!!

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  3. Hey Denise ... so sorry to hear you had to go through this! How bloody revolting. Hope you're feeling better now and that it was all worthwhile ...

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  4. Ouchie! Nice nail polish, tho' ; )

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  5. Oh you poor thing, usually they up-play (as opposed to downplay) any pain so you are over prepared. Glad you are feeling better now and hop they find something useful after all that pain and effort.

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  6. OMG! I had a lip biopsy today...I am searching the internet to read other's experiences: trying to distract myself from the pain. Reading "Holy Fuck!" was the funniest part of my day, bar none. Except it made me laugh and that hurt. I delivered a 4 kg baby without drugs but this: Holy Fuck!! There is no way I am waiting 24 hours before I hit the Advil; Vicodin just isn't cutting it!!! and yes, I have Ehlers-Danlos and tend to react poorly to sutures too....

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    1. Hi Erin - LOL - thank you for your comment! Well, I'm glad I managed to cheer you up, even though it hurt! It's pretty horrendous, isn't it :p Stay on top of that pain relief if you can!

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  7. OMG! I had a lip biopsy today...I am searching the internet to read other's experiences: trying to distract myself from the pain. Reading "Holy Fuck!" was the funniest part of my day, bar none. Except it made me laugh and that hurt. I delivered a 4 kg baby without drugs but this: Holy Fuck!! There is no way I am waiting 24 hours before I hit the Advil; Vicodin just isn't cutting it!!! and yes, I have Ehlers-Danlos and tend to react poorly to sutures too....

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  8. This did make me laugh - had mine done a week ago - If I had read this I don't think I would have done it! Sjogren's biopsy amongst other things - but think it will be negative also. Cut for nothing! Bloody awful isn't it?

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    1. Yes, it IS bloody awful!! I hope your wound heals quickly, and that they actually find something ...

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  9. Hi Denise,

    My name is Syed - I'm 36yrs old and having chronic fatigue issues since last 3 years docs was not able to diagnosed any major thing except dry skin and dry eyes with ANA antibody positive once and then my Rhemeo suggessted Lip biopsy for Sjogrens's and I was following your blog on Lip Biopsy and was very helpful.

    I had my lip biopsy on 27th August 2015 and surgeon told me I will feel better after few days as you said I laugh on his face after a week the pain was still unbearable and I went back to see the surgeon he asked the nurse to remove the undissolved stitches without local anesthesia which was a hell lot of pain and I asked her to stop it and then they did under local anesthesia on 3rd September 2015.

    Pain has reduced but looks like the area of Biopsy is swelled and looks like some extra tissue growth with a tender pain when touch, saw the oral surgeon again today and he says I might have reacted to the dis solvable stitches and in future should not use them and the test result for Sjogren's Syndrome is negative.

    Do you have any suggestions for me?

    Syed

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    1. Oh, how awful for you Syd — yeah, removing the undissolved stitches is the worst, isn't it! And don't you hate it when after all that pain and suffering, the biopsy result is negative? I know it's still useful information to have a null result, but ... gah.

      All I can suggest is to use the lignocaine gel to ease the pain you're having now. I'd hope that any damage that remains will heal gradually. I feel your pain!

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    2. Sorry - SYED, not SYD. Apologies for the typo

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    3. Thanks for reply Denise,

      I'm intrigued that you also had the similar issue with dissolvable stitches where the body refuses to dissolve them and like you was not taking any immune suppressants but still don't know problem I've, doctors these days just cut people but don't have answers.

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    4. So true. I was on immune suppressants when I had the biopsy (and am still on them), and my oral surgeon (eventually!) thought that this stopped my body from properly dissolving the stitches. But yes, I think especially if you have other 'weird health shit' going on, like autoimmune diseases, other medical specialists don't always take the ramifications of this into account.

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  11. I am so glad I read this! I went in to have a biopsy yesterday but the doctor asked if I wanted to wait until next week so that I could enjoy my Thanksgiving. This was the first clue that this was going to be painful. I opted to wait until next Mon. My question is this, I am on plaquenil , methotrexate and prednisone. Will these affect the results? I want to be sure we get accurate results, I have no desire to do this again!
    Thank you!

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  12. I am so glad I read this! I went in to have a biopsy yesterday but the doctor asked if I wanted to wait until next week so that I could enjoy my Thanksgiving. This was the first clue that this was going to be painful. I opted to wait until next Mon. My question is this, I am on plaquenil , methotrexate and prednisone. Will these affect the results? I want to be sure we get accurate results, I have no desire to do this again!
    Thank you!

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    1. Hi Jazmine, thanks for your comment! Hmmm, I'm not a doctor so can't really answer your question properly. But those are all immune suppressants, so they'd presumably be suppressing immune system symptoms. But then again, they're also not meds you want to stop taking suddenly (especially not the prednisone — it's very dangerous to stop that suddenly).

      If anything, I suggest you check with your doctor about the affect of the meds and whether that will affect biopsy results or not.

      Good plan to postpone it to *after* Thanksgiving!

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    2. It's also worth mentioning to whoever is doing the biopsy that you're on immune suppressants, so the suturing might not dissolve as it should etc ... that was the big issue for me (and probably why it was awfully painful for so long in my case). They might have some different options for suturing? Maybe :/

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  13. I just had mine done too a week ago. I busted out all my stitches out the same day it was done. My lips I think have nerve damage.. I hope I get my felling back in my lips. I burised bad as well

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  14. Had my biopsy done on 2/20/17 The pain meds worked great. Suck on sugar free candy to keep your bowels moving, I am still sticking to soft food. I would be okay if we have to repeat it. Get some decent drugs and some ice. Pain scale was 4. Everyone is different. Don't worry about it. Your just wasting your time.

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  15. I'm fine. Had my biopsy and took some meds. Suck on sugar free candy to keep your bowels moving. Pain and swelling weren't to bad. I'm afraid I'm going to take my stitches out with my tongue. I got a pretty bruise on my chin. The idea of eating anything I have to chew is still scary. Everyone is different.Dont believe everything you read.

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    1. Very glad to hear your biopsy wasn't so bad, Carol! Yes, all of us are different, and have different health conditions (my autoimmune disease affected healing, for instance). It's not a matter of 'not believing' — everyone here is simply truthfully reporting their own experiences — this post was acknowledging that while (hopefully) many people have an uncomplicated and not very painful experience, some of us have a harder time of it, and it's good to be aware of that.

      Sure, don't assume that your own experience will be awful, and HOPE for an easy ride, but it's still good to know how things *could possibly* go, and be prepared.

      Good tip about the sugar-free lollies — those are excellent laxatives!

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