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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Micro cystic lymphangioma of the upper lip (http://birthmark.org/board/showthread.php?t=5365)

Myliitlepuddin 06-19-2011 10:11 PM

Micro cystic lymphangioma of the upper lip
 
Hi,

My daughter who is nearly 3 years old has a micro cystic lymphangioma of her upper lip. This is something she has had since birth, we have seen doctors at both Manchester childrens hospital and Alderney childrens hospital and have been offered both surgery and laser treatment, we have also been advised off one doctor not to let her have any treatment. I would really like to hear from someone who has had something similar and could give me any advice.

Many thanks

Sallieivers@aol.com

missy 06-20-2011 12:38 AM

Hi and welcome!

This forum is not as active as the others. But soon other people will be in to give advice.

In the meantime, you might ask an expert here: http://birthmark.org/experts.php

:)

Missy

sweet pea 06-22-2011 02:14 AM

The doctor advised no treatment? That seems a bit odd. Microcystic LMs are a bit more difficult to treat than macrocystic lesions since they are smaller and often times they are intertwined with healthy tissue and hard to see. If the LM is localized to the skin, close to the surface, laser surgery may work very well. I have microcystic LM myself and have had a few laser surgeries with good success. Then after that went for the regular surgery to try and remove as much of the LM as they could. If you can or want to, I would suggest trying sclerotherapy. It's non-invasive and has a quick recovery time. I'd look up what doctor can do that for your daughter and see if that can work for her.

jamielcg 09-14-2011 01:40 AM

Hi,

I have a 2yr old son with a microcystic lm, that affects almost the entire right side of his face. When he was a baby his eye was open & gradually swelled to the point of being closed. After finding Dr. William Shiels an interventional radiologist in Columbus, Ohio, who performed several sclerotherapy sessions. Our son was able to have his eye debulked & opened by a surgeon in Pennsylvania. We are thrilled with all that Dr. Shiels has done & will continue to see him for treatments. With all that being said we are now in the process of searching for a qualified surgeon to debulk his upper lip. The process of finding the right doctors can be exhausting. We live in Nebraska & have been to Mayo in Minn, Childrens in IA, (CHOP) Pennsylvania & lastly flown to Ohio now 4 or 5 times. I encourage you to keep searching for answers, as I will continue to do!

missy 09-14-2011 11:02 AM

Wow! You've racked up some frequent flier miles, haven't you?

Good for you for continuing to search. I've always heard good things about Dr. Shiels.

Thanks for taking the time to post and help another parent!

Missy

Myliitlepuddin 11-17-2011 10:11 PM

Thankyou
 
Hi,

Thankyou all for your reply's, we live in the uk so doctors here are few and far between that deal with lymphangioma. We have seen a specialist here who has suggested lazer treatment, which would have a symptomatic benefit but not a cosmetic benefit. Im finding it really difficult to make a decistion on what to do as it would only be temporary and would need to be re done as it grows back as it regularly swells up and ulcerates, it would not prevent this reocurring. I have also had mixed opinions on weather to have plastic surgery for cosmetic reasons or not, some doctors seem really keen to opperate, to me it seems too keem, almost excited that they had a case in their office. One doctor brought 8 other doctors in to see her. Other doctors have said it would be to risky and could result in nerve damage, bad scarring or also besically ending up with no upper lip. At the moment i feel im making the right decision by doing nothing but im worried as she gets older she will become more aware of it herself. Do any of you have any pictures of before and after treatments you could share with me. Many thanks

Sallieivers@aol.com

Myliitlepuddin 11-17-2011 10:17 PM

I habe done quite a bit if research online on svlerothopy for her and habe asked our doctor if this is a possibility but they did an mri and ultrasound scan and have said the cists are too mictocopic to do, also it is not abailable or licenced in this country

Myliitlepuddin 11-17-2011 10:18 PM

Appologies for my really bad spelling, predictive text gone mad

missy 11-17-2011 11:08 PM

LOL @ predictive text. I love to see what some of those come up with.

My suggestion right now would be to ask one of our experts: http://birthmark.org/experts.php They might be able to give you better advice, even long distance.

Missy

kizzynmw 01-24-2012 08:24 PM

1 Attachment(s)
Quote:

Originally Posted by Myliitlepuddin (Post 24366)
Hi,

Thankyou all for your reply's, we live in the uk so doctors here are few and far between that deal with lymphangioma. We have seen a specialist here who has suggested lazer treatment, which would have a symptomatic benefit but not a cosmetic benefit. Im finding it really difficult to make a decistion on what to do as it would only be temporary and would need to be re done as it grows back as it regularly swells up and ulcerates, it would not prevent this reocurring. I have also had mixed opinions on weather to have plastic surgery for cosmetic reasons or not, some doctors seem really keen to opperate, to me it seems too keem, almost excited that they had a case in their office. One doctor brought 8 other doctors in to see her. Other doctors have said it would be to risky and could result in nerve damage, bad scarring or also besically ending up with no upper lip. At the moment i feel im making the right decision by doing nothing but im worried as she gets older she will become more aware of it herself. Do any of you have any pictures of before and after treatments you could share with me. Many thanks

Sallieivers@aol.com




i am 21 n think i have the same thing, but not sure about all these names lol, have you got a picture of your daughter. i am currently waiting 2 have a staged lip reduction, it has 2 be staged so as not to damage or take out to much of my muscle, which sounds similar 2 what u say? would appreciate a photo so i can see. i am from the UK aswell, sheffield.......... not a good photo of me lol but oh well :)


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