spumanti's Blog

Wow....this sucks. Have you considered plastic surgery? You might want to consider it...there are also laser techniques that can reduce the thickness of the scar.

It's been several months since my surgery, and I still have some numbness, some tightness, and a bit of a lump.....fortunately, it looks fine, for the most part....slight asymmetry.

I would suggest to everyone reading this and considering surgery that they try some other approach to getting rid of the mucocele since surgery sucks, especially if you do not have a plastic surgeon doing the surgery. ENTs and oral surgeons are not trained to remove the disease, not to make you look right. If you must have surgery, get a plastic surgeon who has done lots of these before.

That looks like a great candidate for the CO2 laser ablation. I would opt for that over the knife, if possible. Good luck!!

Hello Mara,

The mucocele will frequently re-occur if the surgeon does not remove the associated minor salivary gland. Often the surgeon will remove the associated salivary gland and the adjacent salivary glands just to be certain that the mucocele will not re-occur.

I have not heard much about cryosurgery. I've read more about the CO2 laser ablation and micro-marsupialization. I've heard good things about the laser ablation method. It sounds like laser ablation might not require salivary gland excision....not sure.

I think your first step is to see a different doctor. Try to see an ENT surgeon or a plastic surgeon instead of an oral surgeon.

Good luck to you!!

Hi Kimmer41,

Given that you're a professional flutist, you have all the more reason to be concerned. I think the recommendation to see a plastic surgeon is a good one. I had mine removed by a ENT surgeon, but I would think that the plastic surgeon will be more likely to show concern for appearance (symmetry, for example). Either way, ask questions. Ask about symmetry, numbness, and scarring. Find out if the doc has done these before and how often. Also, ask about alternatives to the knife. Ask about CO2 laser ablation and micro-marsupialization, which are much less invasive.

I am 6 weeks out from my surgery, and I think if I were a flutist, I would still be impacted. I have external numbness on my lip that supposedly takes 3 mos. to resolve, and my ENT surgeon told me it would be a year before the lumpy and tight band feeling went away, and the lip "remodeled".

So, proceed with caution!!

Good luck to you!!

Good to hear, Ackhelp. I think it's good to wait and see, and I'm hearing that the massaging thing is good and that the lip will "re-model" in time. So, it's probably good to wait a year or so before making any decisions.

Six weeks since surgery, and I still have a numb area on the outside of my lip, although I think it's a bit better. My incision has formed a scar that still feels like a tight band. I notice it a lot and find myself pushing at it with my tongue all the time. My surgeon told me 3 mos until sensation returns and 1 year+ until scar and lumpy feeling go away.

One thing is certain....when I look at those pictures of the guy having the mucocele excision, which shows the scar 2 weeks out, it looks like nothing. While my mucocele was no bigger than his and probably showed even less, my excision looked way worse, was way deeper, and had a lot more stitches, and most stitches were still in place 2 weeks out. And even today, 6 weeks later, the scar shows way more than his did at 2 weeks. So, I think that series of photos is misleading. It looked like a piece of cake to me, after I saw those, but for me, the procedure was more involved....but maybe it just varies.

Recovery is an annoying, lengthy process.....and it would be nice if they could develop a less invasive procedure, such as the CO2 laser ablation or micro-marsupialization.

Mine kind of blew up like that at onset, but it never got quite that big, and never hurt unless I tinkered with it.

If I were you, I'd try to get an urgent care appointment with a primary care doc and then ask for a referral to an ENT specialist from the primary care doc. If it is diagnosed as a mucocele, and they want to cut it out, be sure to read the warnings elsewhere in this forum about asking plenty of questions first and ensuring that your ENT doc is experienced.

You may even want to consider having a plastic surgeon do it. ENT docs and oral surgeons are board certied in treating disease, so removal of the disease process is their focus. Given that a mucocele is not cancer, the priority is to remove the thing while retaining/restoring symmetry, and it seems that a plastic surgeon would be best trained for such an endeavor.

But, I think the most important thing is to get someone who is experienced and someone who confidently tells you that you need not worry about symmetry. Ask plenty of questions, and make sure you are comfortable with the responses.

Good luck.

Hey there Ackhelp,

Uggh....I am so sorry. This SUCKS!!!!! I don't understand why the ENTs approach this surgery so lightly without disclosing complications and giving patients warning pamphlets and such. Even my ENT seemed to be nonchalant about the surgery, initially suggesting he perform it then and there on the day I walked in to get it diagnosed, as though he were cutting a mole off or something. He seemed all ho-hum about it. I mean, usually, they tell you all these scary worst case things to prepare you. Once, I had impacted wisdom teeth removed, for which the oral surgeon acted like it was a big ordeal. Compared to the impacted wisdom teeth removal, the mucocele removal was easily 10 times worse in terms of post operative discomfort and lengthy healing and all around difficulty of talking/eating/facial expression, etc., not to mention lengthy numbness (days to months afterwards) and worries about scarring and asymmetry.

I've learned from this experience how important the mouth and lips are since we depend on them for a vast number of daily activities that we take for granted. This isn't like a cut on the arm or leg where we can hide it.

I want you to know that you already helped me by posting your before and after photos. Before my procedure, I e-mailed my ENT and told him that I can see that asymmetry is one of the potential complications of this mucocele excision per what happened to this girl who posted these photos, and I sent him the link to your posting. So, he saw your photos, and to that he replied, "Those complications are rare, and I will be careful." He also said that you will only find the extreme problem cases on web sites and forums because these 5% of people with complications are the only ones posting. I have to disagree with that. I think young people get around on the internet, and a mucocele is weird enough that most young people will end up in this forum seeking advice.

So, yeah, I agree with you, "gee, I haven't seen one of these in this location before" is a definite warning sign because mucoceles occur most commonly on the lip. I did ask my ENTs if he had done many of these before, and he nodded like, "of course". Frankly, I think he was a little annoyed with my anxiety about the whole thing and blamed this web site on it. But I'm extremely glad I found this web site, otherwise, I would be freaking out all the more, since the post operative healing is NOT a piece of cake.

I voiced three concerns going into the surgery to the ENT: Asymmetry, External scarring, and numbness. It's been two weeks today since surgery, and it's too soon to make the judgement call on asymmetry, although it's looking like it's at least tolerable. 100% the same? I don't think it will be 100% the same, but I'm not going to worry since the mucocele already threw off my symmetry a bit. Regarding the external scarring, something might show when I'm talking. Other than that, I don't think anything will show. So, this is looking ok. Regarding numbness, we'll see. I still have numbness in a patch on the exterior of my lip. My ENT told me it should go away in 3 mos. My dentist friends said up to 6 mos. So, I'll have to wait it out.

So, thanks for taking the time to post your experience, Ackhelp, as I'm sure it will help others, as it has helped me. I'm really sorry this happened to you, and I hope the plastic surgeon can fix the problem so that you can at least close your mouth naturally such that you teeth don't show.

Everyone facing this surgery should get a second opinion or at least ask a lot of questions and ensure the doc is experienced.

* Ask how exactly the removal will be done.
* Ask if the associated salivary gland will be excised (if it's not, the mucocele could re-occur).
* Ask about the complications of asymmetry, external scarring, and permanent numbness.
* Ask how many of these the doc has performed and whether he has removed them from the area where yours is located in the past.

Take care, Ackhelp. Thank you so much for sharing your story with others. Keep us posted on your progress. I wish you the best in getting things fixed.

Spumanti

Hey missourikoi, you really should see a doctor about this. I am no doctor, but the way you describe it, it does not sound like a lip mucocele as they generally occur on the inside. Plus, they don't bleed. If you drain them, a translucent yellow mucous will come out, rarely any blood at all. Really, you should see a doctor and get the thing diagnosed.

Hey Bleach, I agree with JerseyGirl. It sounds like the associated salivary gland was not removed, in which case the mucocele may return. But then again, it seems like something your ENT doc should have known. Do you know if the salivary gland that was feeding your mucocele was removed along with the mucocele?

My ENT doc said that the salivary gland must be excised, otherwise, the mucocele will likely come back. So, I had a big old 1.5" incision with 8 stitches, but hopefully, it means the thing is gone for good....

Yes, I know what you mean regarding the tube. This is likely the salivary gland that caused the mucocele. In retrospect, I'm pretty sure this is what I was feeling whenever I drained my mucocele. I could feel the vertical line downward. When you have the mucocele removed, they will likely need to remove the salivary gland, as well. You should get it checked out by an ENT doc. Then consider your options. Try the hydrogen peroxide wash...I wish I had at least tried that. Also, look into the laser ablation and micro-marsupialization. Good luck.

Hey there everyone,

The day before yesterday seemed pain free, but yesterday, it was tender...I think I over-did on the talking....the stitches are still rubbing and scratching, adding to the "raw" feeling. Still numb in the swollen and sore area.....I think I need to be more patient and just realize it's going to take some time.

I'm starting to come to the conclusion that how nasty this surgery ends up depends on the size, type, and location of the mucocele, so not all mucoceles are alike....one thing that bugs me is the fact that my cut extends pretty much to the top of my lip such that when I put my lips together, I have a stitch right between them....not to mention a bit of numbness there that extends downward on the exterior of my lip, right to the bottom ridge of my lip.

ok, patience, patience......arrgh. :/

Ahhh, this forum is really great....I feel like we're in a mucocele support group!! LOL I think we had surgery about the same time - on Wednesday, right?

I ventured into public today (day 4). I felt a little self-conscious because I'm still swollen and bulging, but I managed. I'm still a little mumbly when I talk, and smiling still hurts. I was reading what Kadavy wrote in that he grabbed his cheeks when he started smiling because it hurt when he smiled, too. I tried that technique today, and it worked well.

I was finally able to see the end of my cut.....yep, I'd say about 1.5 inches, and I have 8 stitches!!

I know what you mean exactly regarding dribbling down the chin. I was doing that big time. Now, I seem to be able to avoid dribbling, but that numb area feels seriously weird and unpleasant against the glass. I have a friend who's a dentist, and she said that the numbness will eventually go away but to be patient because it takes a while.

Good healing to you!!

Wow, Erin, you must have had a small one? Mine was the size of a large almond (the doc even commented that it was large)....yeah, it's actually not as painful as I thought it would be. The thing that bugs me a lot is the feeling of the sharp ends of the stitches poking my gums under my teeth. That's pretty unpleasant. Plus, I can't tell whether I have food caught down there, or it's the stitches.

But yeah, I don't think the doc used one of those things on my lip. Instead, both he and the nurse held my lip during the procedure.

It's amazing that you can laugh. If I even smiled right now, it would hurt. It's a problem for me not smiling because I generally pretty smiley. I still have a big numb spot (size of a nickel or dime) on the most swollen section of my the exterior part of my lip. I don't feel any numbness on the inside of my mouth, though. I heard the numbness can last a while....I hope it comes back because it feels extremely weird when I'm drinking from a glass and such.

Mine is definitely vertical, and the cut goes all the way down, much lower than the area of the mucocele cyst itself, presumably in order to remove the salivary gland. As I mentioned, I don't see how the horizontal cut along the lower lip can remove the salivary gland....in which case there is somewhat of a risk for recurrence....at least, this is my understanding. This is why they prefer to also remove the salivary gland while they're in there. But then again, I'm speaking from two week's Google surfing crash course on mucoceles.

http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijds/vol3n2/labial.xml

"Surgical excision is the most commonly used method ( 1 , 5 , 13 ) although if extirpation is not complete recurrence is frequent. Baurmash HD ( 1 ) showed that there are 3 possible approaches to the management of mucoceles of the lower lip which also apply. The small lesion can be completely excised, making sure to include the associated salivary gland tissue as well as any marginal glands before primary closure. Large mucoceles are best treated with an unroofing procedure (marsupialization).The third procedure involves the dissection of the mucocele along with the servicing mucous glands. This technique is performed on moderate sized lesions. As in the excision technique, all marginal glands should be removed before primary closure."

There must be a reason for making a decision to cut diagonal or horizontal rather than vertical......but what I don't understand is how they can go horizontal or diagonal and still excise the appropriate salivary gland that built the big creature in the first place? The salivary gland will usually extend downward....at least that's my understanding from my very limited knowledge. And it also would explain why my cut goes all the friggin' way downward. I can't even see the end of it, and I don't want to pull it to look, but I have at least 7 stitches, and it's at least 1.5 inches long.

Hey there Ackhelp, I have big lips by nature to begin with, which probably helped me with the symmetry issue, although I also think my surgeon was careful, and he showed me what he removed, and it was definitely a foreign looking, non-fleshy, white lumpy sack thing. So, I think the vast majority of my lip remained.

Let's see....53 hours, and I'm still puffy but maybe a tad bit less so. It still hurts but not horribly....ibuprofin has been sufficient, and half the time, I forget to take it. I take it only when if my lip feels particularly painful/uncomfortable/itchy.

Thanks for the info on the numb spot going away....I certainly hope it will go away....I was reading that the nerves come back, but they grow really slowly....and it can take 6 mos or even a year. But, I think sometimes they don't entirely come back, as a couple people who are 1 year+ from surgery have commented in this forum.

I'm actually happy to feel it hurting because it means at least some of my nerves are working. So, bring on the pain! :-)


Ahh...editing because I forgot to answer your question - no, the doc didn't tell me that fussing with it caused it to get bigger, but I personally suspect that it did.

Hang in there, Ackhelp. Lips are pliable things, so it could be that yours stretch back into place in time. Hmm....I do wonder why he did a horizontal incision, though. I hope you get somewhere by having another doc look at it. Good luck.

Mine was excised with a vertical incision.

But one thing to keep in mind is that while my incision was vertical in that it's perpendicular to the length of my lip, it means the stitches are horizontal. So, "horizontal stitches" would mean vertical incision. And this seems to be the most common type of incision for lip mucoceles, in looking at various online photos. I also asked a friend who's a dentist, and she said that the incision on the lower lip is generally vertical.

I know that the cause is supposed to be trauma to a salivary gland, but I am convinced that I somehow got it while impatiently using my teeth (instead of a knife) to peel fresh lychees. I don't know whether the rough skin on the lychee injured me, or whether there was some kind of substance in the lychee skin the caused the salivary gland to plug and rupture (I have no idea if that's even possible), but I don't recall feeling any pain, and I've certainly bitten into harder things that scratched my lips much worse in the past. I guess this is why I keep thinking there was some substance on the exterior or witihn the skin of that bizarro tropical fruit. Lychees are good, though....I still like them. I have forgiven them. ;-) But I will definitely be more careful about peeling them in the future. I had never even heard of a mucocele before this happened. Now that I know it can happen, I'm going to be super careful with my mouth.

...and it was a big sucker. Mine was of the bluish hue variety on my lower lip, and I had it for months. I kept doing the poke and drain thing, which was totally useless since within a couple days, it would always come back. It would provide temporary relief, however. The first time I did it, I was convinced that I had cured myself.....only to find that it came back within a week.

Anyway, the ENT doc showed it to me - it was about the size of an almond, and he managed to get it out without rupturing it, I think, since it looked puffy. He called it large, and I think I have either 7 or 8 dissolvable stitches that extend vertically from the point where my lips come together, downward on the inside (I think he also excised the salivary gland).

My concerns going into the procedure were asymmetry, external scarring, and permanent numbness. I think the symmetry is going to be ok, although right now, I'm way too swollen to be able to say for sure. I think the external scarring is going to be none to minimal since the cut seems to stop right about where my lips come together....so it has stayed mostly on the wet side or right on the line between wet and dry. Regarding the numbness, there's an area on the outside of my lip about the size of a dime that still feels pretty numb. It's on the most swollen part of my lip. I'm hopeful that this will go away in time - it's only been a day since the surgery. Oddly, the only numbness is on the outside of my lip where there are no visible cuts. I seem to have full sensation along the actually cut line on the inside (which is about 1.5 inches long and vertical).

I read that the incidence of lip mucoceles is like 3 in 1000, and most people have never even heard of a mucocele. Lucky us!!!!! We should all buy lottery tickets, huh?!?

Hmm....that's good to know, jabhiji....thank you for the info.

Mine looks like yours then. So, just trying to understand...you said they drained they cut and drained the mucocele and removed the salivary gland, so you had stitches. Yet, they used a laser for the removal of the mucocele and the salivary gland? So, they still cut you open with an incision, but used a laser to remove things once opened up?

What did your mucocele look like....was it one of those raised detached looking things or one of those things that look deeper and not so much on the skins surface but rather underneath?

i.e., did it look like this -
http://cudental.creighton.edu/images/mucocele4.jpg
http://prosites-otohouston.homestead.com/files/Lip_Mucocele_x2__Child_353SQ.jpg

or like this - http://upload.wikimedia.org/wikipedia/commons/thumb/c/ce/Mucocele02-17-06cropped.jpg/745px-Mucocele02-17-06cropped.jpg
http://odontoweb.espaciolatino.com/imagenes/abc/mucocele.jpg

I can envision laser surgery on the former set but not the latter.....

I suppose I got the impression that most incisions would be vertical based on these photos http://instruct.uwo.ca/anatomy/636/clinical%20cases/mucocele/gallery/ , where you can see that the stitches are vertical. This isn't the greatest illustration, but this also implies a vertical incision - http://square.umin.ac.jp/saitaka/kouge/kouki/2/mucocele1.gif

It just seems that horizontal stitches would run the risk of pulling the lip tighter than it should be pulled, leading to making the lip smaller than it should be.

I'm writing this on behalf of Ackhelp. She said she had her lower lip mucocele removed via a horizontal incision. I'm no expert by any means, but I've never heard of a horizontal incision for the removal of a lower lip mucocele. I would think a horizontal incision would make it much more difficult to ensure lip symmetry. Per Ackhelp's photos, the surgeon as left her with an asymmetrical lower lip, thanks to his horizontal incision and tight stitches.

So, I guess this is a poll of sorts....how many of you with lower lip mucoceles had horizontal incisions?

Well, I'm no doctor....but it seems really strange to have done a horizontal incision. I wonder if he did that to avoid causing a scar that showed externally. He may have thought he was doing you a favor by ensuring that the incision did not show on the exterior of your lip. In any case, it seems unusual to do the horizontal incision, and it also seems like it would be difficult to sew the area in such a way that it doesn't pull to the extent that it greatly reduces the "normal" size of that side of your lip. It just seems logically a lot more difficult to retain symmetry with a horizontal incision than with a vertical one.

I think it would be interesting to ask if anyone had a lower lip mucocele and had it removed with a horizontal incision. All the photos and descriptions I've seen on the internet have implied the incision was always vertical.

Well, I've had a mucocele for months.....and have kept up the draining thing....finally looking into having it removed permanently, and all of these horror stories have me pretty freaked out. Yet, the thing drives me nuts, and I want it removed, so I will probably go through with it.

BTW, I think the doctor didn't say anything because of the potential malpractice liability.....you're right that he probably felt guilty (how could he not?), and he was also probably worried since I would think you'd have grounds for a lawsuit.

Good luck to you. I'm sorry this happened - it sucks! But hang in there....one way or another, you'll get it fixed.