My Story

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.

First off, if anyone bugs you about 'not coming to terms easier' they need to bugger off. Your experience is yours alone and nobody has the right to judge whether or not you handled it 'properly'. You handled it the way you handled it and that's that. I highly encourage you to get some help, whether that's counselling or surgery to correct what you don't like. (I also hope that you are not offended by my suggestions, just trying to offer what I can). And thankfully, we have found this little space on the web to vent and gripe and support each other. I think alot of us here don't really realize how this can change someone's life, like it did with you. Most of us had no problems with the procedures we had, so it's sobering to see the other side of the fence. At any rate, we (I, anyway, I can't speak for everyone of course) are here for ya if ya need us. Please keep us updated. You'll be in my thoughts and prayers.
Take care of yourself,
Kayti

Firstly guys thank you so much for you very kind and heartfelt replies.

I have explorered many solutions. the thing I'm trying at the moment is massaging my lip with a red jasper crystal. this is meant to break down the bond between the skin and the scar and after about 6 weeks there should be a softening and over 18 months the body should be able to absorb the scar tissue once the bond is broken. Its called scarsaway for you info. Check it out. I've been doing it for about 3 weeks now and no improvement although he did tell me nothing would happen for a couple of months. I keep wonding if I've been duped! However I will keep at it and maybe there will be some improvement.

The other thing I have been recommended is to take a very high dosage of serrapeptose. It is a nat enzyme from the silk worm and completely safe. So I will give it a go in conjunction with the crystal. I have thought of plastic surgery often and i am scared because of the risk of keloid which would be terrible. Also so much tissue was removed and the lower lip feels so thin. I don't know if they can do anything about that.

I wake up in the morning and I'm happy then I feel my lip and I feel a wave of despair come over me. Then I have to push myself to override it and get up and go to work. My every thinking moment is preoccupied with it because it is irriatation. It feels like everything is tarnished and when I go on holiday it hits me even more because my uncomfortable lip comes with me. I'm very good at putting on a front and nobody realises how gutted I feel. I don't know how to share this with my busy friends and they will probably think why am I sharing it at this stage when I've been dealing with it all this time. It will be hard for anyone to understand what I'm coping with, I'm not sure I could if I wasn't experiencing it.

I have had counselling which I can't afford and every so often I have to just go and bawl my eyes out with a counsellor but for the most part I struggle with living with it. I am so angry at myself for allowing someone to ruin my life and that is very hard to come to terms with. I was a very confident and happy person but the difference is now I pretend to be confident and happy but I'm not at all. I often leave social occasions early or more and more avoid them. This is not my spirit but dealing with lots of people is now difficult and no longer a joy.

Once again it is great to share this with people who know what I'm talking about and know this 'minor procedure' is actually quite a major one.

I am going to try the serrapeptose next. Psychologially I feel if there is something left to try it really helps me to keep going.

I will let you know if any of these things help. Thanks for listening and thanks to the person who set this forum up. If I'd have come here 10 years ago I would have been very careful indeed.

I was really touched by your comments. It is the first time since this op that I've felt my voice was heard. When I told my sister and my mum that there had been some negligence their response was I'm too fussy and I need to get over myself. I never mentioned it to anyone again. One of my freinds even told come on it's only a lip it's not a big deal. So I didn't want to keep humiliating myself further. I don't want to become the butt of other people's jokes so I've buried it.

There were other people in the family suffering with all kinds of things at the time I had the surgery and I felt they would just think I was trivial if I talked about it. The other problem is I don't want to bore my friends with it to the point they don't want to see me incase I start talking about my lip. It is so hard. I would love to hear how other people cope.

Dear fellow mucocele sufferers. I made a heart felt posting a while back about how this post op mucolele has really affected my life.

I am very conscious of it all the time and it really gets me down. I don't feel good about myself in the way I did before I ever had this minor surgery. When the doctor told me she was going to drain it I said I want to go home and think this through and she insisted I was crazy as it was so minor. How many times have I wished I could replay that scene and I walked away - I mean I'd got out the char and stood up and was ready to go. I'd only gone for a diagnosis I'd never intended to go for treatment at that stage. She said come on be brave and she made a little joke and I said oh alright then.

Usually I only always look for natural remedies because my fear of a doctor damaging me for something minor is always a concern to me. Alot of damage can be done in a moment and the sufferer has to learn to live with it forever. This should only ever be the case when things are dangerous and life threatening and not minor things llike mucoceles unless the person isn't bothered either way.

This has jsut been so hard for me because as I wake up every morning I feel my injured lip and I just feel depressed. I am a teacher and I go through the motions daily and noone would know how deaply traumatised I am about this. So I avoid all challenging situations and its really spoilt my life as I do the minimum to be socially aceeptable these days and I've retreated more and more because I feel so unhappy and distracted all the time. It literally drives me crazy.

I've had counselling etc but what can anyone do? I don't talk about it anymore as it is so boring for other people and I don't want to be a bore. however I feel there is noone in the world to share my silent despair with and I've been like this for over 10 years now and I'm finding it harder and harder to deal with on my own.

How do tell your friends what you're going through after 10 years, and who can take it on. Everyone has problems and maybe this would sound so trivial I don't want it to be the butt of other people's jokes or people would think she can't be upset about that it must be about something else. However I feel those close to me should know what my lfie feels like but my fear is they won't understand and think I'm just trying to get attention or worse still that I'm imagining it or being neurotic.

I wonder how I'm going to get through the rest of my life feeling like this. It's been a long time and because I'm not so close to anyone anymore, no-one is really aware how much I've retreated or that anything is fundamentally wrong. I'm not someone who suffers from depression infact its the fact that my qualifty of my llife has been so affected is what upsets me so much inside.

I was dancing every day till this happened and because my lip is so distracting and uncomfortable I find it really hard work to pursue any hobbies with joy. I've stopped dancing because it is hard to dance with a heavy heart and I also find it so hard to focus on anything properly with my lip being so uncomfortable. Let me emphasise the fact I'm not someone who suffers from depression and I am someone who loves life even with all its difficulties and challenges but it is as a result of the surgery and how it makes me feel is what's changed me.

My problem is my lower lip feels thin and lifeless, the scar is a constant irritation as it is hypertrpic and catches when I talk and I have a constant dribble which I can't get rid of because I have lost the seal on my lips and my smile has changed. Although I say so myself it was one of my best features and now my smile is distorted and its just not the same anymore. It might not sound much but that is part of how I express myself and thats been affected. How can you switch your mind off from that? People always used to say wow you've got a lovely smile and now they don't say that anymore and that is a big part of my identity gone. These are all things that make life what it is and its the little things in life that matter and make you feel good. There are so many better ways to get rid of this mucocele as I'm learning all the time. I'm finding this decision so hard to live with.

Has anyone else been effected by their muccocele surgery and how do you cope? Do you tell people about it or keep it to yourself. Its difficult for other peopel to imagine how this can impact on you. For me my life is very public. You would think that after 10 years I would be used to it but it still sends me crazy every breathing second of my day.

Every day I wake up and tell myself I'm lucky - there are people so much worse off than me and I shouldn't let this get me down and this is minor. I go through this dialogue over and over again. Then I go out and start teaching my class and feel my lip pulling all the time I'm talking and I can feel my anger rising up inside me because I'm having to override that distraction instead of being able to just enjoy teaching. Then I can't wait for the day to end so I can go home and cry because there's nothing I can do about it. It's awful living like this. I really don't know how to go on living with it and stay sane.

My email is therapyswop@hotmail .com I would love to hear from some of you. I have considered plastic surgery but it won't bring my sensation back where there is nerve damage and there is a possobility of the scarring turning into a keloid so I'm scared. I've been told that plastic surgery could make it worse and I can't get the result I want as the damage is done. The look of the treatment is barely visible but it is the sensation that is so awful. I used to also go to singing lessons but I've stopped that to because singing is the worst thing. You have to stretch your lips and the sound makes the scar vibrate and it feels so horrible that I don't want to sing.

I'm wondering about collagen injections to try to bring some symmetry back as this would feel more comfortable (maybe). I've also caused that collagen injections can cause mucoceles!

The lip is flat inside, not bulbous anymore and therefore my lips don't meet inside and it just feels weird. Your lips have a natural seal and now mine don't seal shut and one side of my lips is permantely wet and the other dry. It doesn't feel normal. Especiallly when I'm out - half my lips are cold and the othe rother half warm.

In the corner of my mouth my lips don't meet at all especially when I smile and when I smile it pulls. and I hate the sensation and it's not something I can switch off from easily. That's why when I eat etc it's hard to keep the saliva in my mouth. All these little things have given me a low esteem and most nights

I cry myself to sleep because I want to do something about it and I can't. I can't let any really hot or cold drinks tocu my lower lip because it is too sensitive. When I talk I have to be careful not to spit because the saliva flys out my mouth and its so embarrassing.

These are things you shouldn't have to be aware of because they are a constant irritation and distraction in any socual situation and I don't want to be aware of my lip all the time. I want to be able to forget about it. Everyday I have to build myself up to face the world and go out and teach. I'm considered to be a brilliant teacher in my field and I love it but by the end of the day my lip is driving me so crazy I can't wait to get home and not be public anymore. I often avoid social situations now because it has become more of an effort than a joy and it's so sad because I want to love my lfie again and I'm so angry that I had this surgery and have all this discomfort to cope with that it tarnishes everything.

I'm not unattractive but have avoided relationships for 10 years now as I don't know how to deal with this problem and involve anyone else. I don't think it would be fair for someone else to have to get involved with me while I'm feeling like this. At the same time I am obviously lonely and each year I feel a bit lonlier. I know it sounds crazy that such a small thing could have such a big impact.

For me it was a very bad decision allowing this to be taken out of my hands and having it removed surgically. I'm committed to alternative health and I to this day cannot understand why I said OK. I really had no idea it would lead to this. I thought she would literally drain it with a small incision and that made sense at the time. I know I've let myself down badly and mostly I'm so mad with myself for allowing myself to be rushed into somethiing. I should have ignored the fact she was busy and quizzed her and once I had all the facts I could have made an intelligent decision. After all It doesn't matter what the doctor thinks, you have to live with the aftermath and she doesn't!

I wasn't properly informed and if I'd known she was going to remove so much tissue and a gland I would never ever have had it done - It would have to have been a life and death situation. The cyst itself wasn't that bad and I could have even lived with that if it couldn't be treated.. Anything would have been preferable to this. Once she'd started I realised this was a much bigger treatment than I had been led to believe but it was too late by then as she'd already mad a massive incision.

I'm now considering neural therapy to help with the scarring. Is anyone aware of this therapy? I've just found someone in the UK and now this treatment for the first time is accessible. The treatment is supposed to encourage the body to repair damaged tissue. I have very little money and have to be really careful that I don't waste yet more money. When you feel desperate you are vulnerable to what looks like an answer and I have to be careful not to be a sucker. It is going to be a long term treatment and I have to save up alot of money.

If this posting rings bells for you and you are experiencing some of my upset and anger or you have any ideas to improve my lip or suggestions to help me cope pleae contact me. Those of you who've also had bad experiences I would love to know how you cope and how it affects you. Am I the only person in the whole world who feels like this? Surely not. Any support would be welcome as I feel so isolated. The trouble is I don't really want to talk about the problem I just want my old lips back and I know I can't.

Looking forward to hearing from you and thank you for your other responses which were so kind and heartfelt. It did mean alot to me that you took the troble to respond.

Anyone considering surgery. Think again it does make a permanent change and it is forever. There is a treatment where the cyst can be threaded with silk and after a week it just drops off. If I could put the clocks back I would look for that treatment or ask my GP to try it. Cryo is not invasive and very successful. The surgery is quite barbaric and unnecessarily invasive so be careful. Live with it longer and check everthing out first. You won't regret it like me. You have a whole life ahead don't let it be spoilt with this treatment.

With Hindsight

Yeah. I hear you. It's been 6 months for me and I am still upset and I still think about it. how can I not? I see the gap every morning when I look in a mirror and I have a crooked smile in all my pictures. I'm very aware of it while just sitting here breathing because like you the air comes through. I dribble like you do, and I still cant whistle correctly.

Every time I audition for something now I have to worry that I just wont have a good smile for the part. Who is going to cast wonky lip as the leading lady? It's just another thing for them to decide I won't fit the part.

I should have researched. What was I to know!? Like you i thought this would be simple. I never expected nor was told I would end up with a messed up lip.

Sigh. People ask me if I am still concidering plastic surgery. Yes, yes I am. Of course. I want my smile back. Although now I am terrified that any surgery is going to mess me up further. I dont even want to go to the dentist. But I do want my lip to look better so Im going to go to a plastic surgeon.

By the way. I hate HATE HATE oral surgeons now. Hate them. Stupid idiots. I have had three experiances with them and in all cases things happened that they never said was a possiblity. Of course this was the worst. Pain I can dealt with. Being awake and in pain while they crack my teeth apart I can deal with. But having a permanent messed up lip is emotionaly distressing and long term and I cant even look at my face the same way anymore. It changed my confidance and self-esteem. I dont feel pretty at all. It is also still numb.




I probably shouldnt have even come in here to check in because it makes me so upset that Im back in tears again.

"You can’t forget your lips. You can feel the wound, eating, drinking, talking, smiling, singing, kissing laughing."

Exactly. And like you said these ARE the most important things in your life. And for you, you're on stage like me. Yes, teaching IS on stage. Having had this happen definitly affects your ability to be comfortable on stage teaching. Especially when the scar tissue catches on your teeth while talking (happens to me and Im sure it does you) or vibrates like you said. I sing and it still affects my v's and f's.


P.S. Would you be willing to share a picture with me?

P.P.S I understand your feelings of anger toward yourself for not checking into things beforehand, but it is NOT your fault. It is the doctors for not telling you the potential side affects. The doctor I saw NEVER mentioned deformity yet after the fact he tells me two other patients had the same results. He sucks. Had I known that, I might have researched more. You didnt even have the internet back when you had yours done and you relied on your doctor who is supposed to be knowledgable. You're not the one to be mad at. Its obviously the doctor's fault for not telling you about what could happen.

I too wish I had made the decision not to have anything done. The bump was FAR better. A hundred times better.

Thank you so much for your responses. I have carried this burden for 10 years now and finally I don't feel alone with this problem. Our voices need to be heard as every day I'm regretting my surgery, someone somewhere is having this done without very likely knowing the consequences and trauma this can bring.

Now I know there are many ways to treat this very effectively without surgery and it makes me sick that my life has been spoilt over something so minor.

I have been checking out quite a few things to see if there is any small hope. One thing I found out is that serrapeptase is an enzyme which will eat scar tissue. it is natural and safe. You have to take high doses but it also helps many other problems like arthrittus etc so at least if it doesn't work it's not a fortune and it won't do you any harm.

I ordered some today and I'm starting today. I'm not holding out a great deal of hope but it is worth a try so I'll let you know what happens.

http://vitalvotes.com/QA/How-to-Reduce-the-Visibility-of-Scars-962.aspx

Here is a link for neural therapy. It is a therapy where procaine is injected into the scar and apparently in time it allows the scar to resolve. I've read up quite alot about procaine and it triggers something in the body to start absorbing the scar tissue back into the body.

There is only one practitioner in the UK but there are many in the US and also Australia. I urge all of you that are considering plastic surgery to investigate this first. I've tried to keep plastic surgery as my last resort because my feelings about surgery is it is so final that you want to look at all the other options first. At least if they don't work they won't do you any harm. I am worried that I could end up with something worse after plastic and that would be a nightmare.

I'm hoping that if neural therapy could get rid of the scar my lip would be more flexible and it might even begin to feel normal again. I will have to save up for quite a while as I don't want to start the treatment and not be able to complete it.

I have also read that there is a technique where bee venom is mixed with procaine and this is really effective on scar removal.

I can't vouch for any of these treatments but hope maybe someone somewhere will have the benefit of my hours of research. If anyone wants to email me at therapyswop@hotmail.com I'll forward you some further information.

By the way. Serrapeptose also gets rid of cysts. yeah too bad I didn't know that before but I urge you to try this before surgery. If anyone is considering surgery try high doses of serrapeptose first.

There is another treatment called scarsaway and if you put scarsaway into google it should come up. It is apparently an australian crystal which you rub over the scar everyday and there is something in the crystal which breaks down the fibrous scar tissue and breaks the bond with the scar and the normal tissue and the scar is meant to slowly disappear. I've only been doing it for a few weeks so I can't comment as yet. There are some interesting articles and testimonials on the website. I figured it was only $25 or something like that so I'd give it a go.

Ackhelp thank you for sharing with me how this affects your life. I really appreciate it. I stopped sharing this with people a long time ago because I think most of my friends and family thought I was being neurotic and couldn't understand how something so seemingly minor could preoccupy me to such an extent.

To actually meet someone in the world who's going through what I do is a huge relief. It doesn't change anything and the problen is still there but it is good to meet someone who really understands what it is to live with this mucocele post surgically. I love life but sometimes I wonder how I'm going to get through the rest of my life with this burden and I still cry about it alot on my own.

I came to the forum tonight not expecting to see a response and found your letters it was really heartwarming. However, it really saddened me hearing your stories and I felt so angry for myself and for you too. Dreams and lives shattered in a moment over something so minor. It feels like an act of brutality and every day I wake up I'm thinking why did I let this happen, why???

Thank you so much for your support Ackhelp. It is true and you're right I shouldn't be mad at myself. The doctors are supposed to know best. They should have shared all their knowledge and given me time to reconsider.

One way we can support each other is to share information. I'm hoping this neural therapy will help. Having a bit of hope helps. I'm almost scared to try it though because if it doen't work - then what???? If there is anyone out there who can help - tell us please. We want our lives back....

Well it's 3.00 am here in the UK got to sleep now. You're in my thoughts .....

PS

Thanks for this forum. I wish it had been here 10 years ago. But then I didn't know a mouse from a keyboard ... lol.

Now at least I know I'm not the only person in the whole world who is suffering in silence. I'm glad to have met you all and once again thanks so much for your messages and emails. I know how much courage it takes to write about this stuff as it brings up feelings that are so hard to deal with.

Maybe collectively we might be able to find some solutions.

With Hindsight

Thanks for sharing your stories - here's mine.

Got a mucocele in my inside, lower left lip - popped it about 50 times, antibiotics, the whole thing. Finally went to the ENT to have it removed.

The surgery went OK, although surgery sucks. The pain wasn't bad, he used a ton of pain killer, and I didn't have much pain afterword, but the surgery itself went on for about 30 minutes - and I was so tense the whole time that I was exhausted when it was over. He removed a ton of stuff, including an enormous gland. Yuck.

It was pretty awful the first few days, although the lip heals quickly. I never required more than a few of the pain pills he'd given me, so that must say something about the surgery. After a week, the stitches were starting to come out on their own, and when the final one came out after about 9 days, the lip really healed quickly.

Three weeks later, the biggest problem is the indentation in the lip. He told me not to worry about it - that the lip will correct itself, but it's no better. The pain is gone, the lip has healed well (but with a little scar tissue), but I'm sad that I have a big chunk of lip gone.

I don't know what I would have done different, short of visiting a plastic surgeon prior to the surgery. The mucocele was driving me absolutely insane, so it had to go. Now, I'm just holding on to see what happens with the lip.

Take care... Ed

Hi Ed,
Yeah, I lost a litttle on my lip horizon too. It took about 8 months for it to smooth out a bit better. I still have a little divet, but only I really notice it. I can now whistle again, which is great. I'm trying to see it as my badge of honor for undergoing the mucocele trials. Hope yours turns out like mine did eventually.
Take care,
Kayti