Micro cystic lymphangioma of the upper lip

[chun]

My daughter who is now almost 8 also has a lymphangioma in the upper lip. She's had 2 surgeries and is getting ready for a 3rd next week. We live in the US. We are fortunate to have a great doctor who doesn't rush to have surgeries but allows us to make the decision of when with guidance and advise along the way. I have not regretted either surgeries as it helped tremendously with the ulcers which were very frequent and pretty bad in the first few years. She now only has them when she's a bit under the weather and they're barely noticeable.

Whatever you decided, know the choice is yours to make. Good luck.

[Myliitlepuddin]

Originally Posted by kizzynmw

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

Hi,
Sorry ive just seen your reply. We have recently been refered to south tees hospital and will be trying bleomycin injections. Which from what i have been told is very effective and ive done a bit of research on this.

If you want any info or to discuss our expieriences feel free to email me.

Sallieivers@aol.com

[Myliitlepuddin]

Originally Posted by chun

My daughter who is now almost 8 also has a lymphangioma in the upper lip. She's had 2 surgeries and is getting ready for a 3rd next week. We live in the US. We are fortunate to have a great doctor who doesn't rush to have surgeries but allows us to make the decision of when with guidance and advise along the way. I have not regretted either surgeries as it helped tremendously with the ulcers which were very frequent and pretty bad in the first few years. She now only has them when she's a bit under the weather and they're barely noticeable.

Whatever you decided, know the choice is yours to make. Good luck.

Thank you for your reply, we have recently been refered to a new hospital and are going to try bleomycin injections which looks really promising.

I hope your daughters surgery goes well.

[Ayalara]

Originally Posted by kizzynmw

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

Hi all, I am 27 and a newbie in this forum but I'm glad that I found this site when I was searching for helps and information about my birthmark, and know that I'm not alone which I think I do for all these years I stumbled upon this thread while browsing around this forum and thinking of posting my own thread, but @kizzynwm: thank you for you picture, I think I am having the same thing as yours...eventhough I'm not 100 percent sure, .... here is a picture of myself....

[Myliitlepuddin]

Hi ayalara, thankyou for sharing your picture, where do you live x

[Ayalara]

Originally Posted by Myliitlepuddin

Hi ayalara, thankyou for sharing your picture, where do you live x

Hi sorry for my late reply,
I'm from Indonesia.
How's your daughter? I hope all is well

[Myliitlepuddin]

Hi, yes she is good thanks and we now have a date for her to start her treatment.

[Ayalara]

Good to hear that I hope all is well with her coming treatment.

I'm looking for a treatment too in Germany by the end of this month *crossing my fingers*

[Myliitlepuddin]

http://www.gosh.nhs.uk/EasysiteWeb/g... pe=Attachment

thought some of you may find this useful from the london gosh hospital, regarding schlerotherapy

[juliajiang]

Originally Posted by chun

My daughter who is now almost 8 also has a lymphangioma in the upper lip. She's had 2 surgeries and is getting ready for a 3rd next week. We live in the US. We are fortunate to have a great doctor who doesn't rush to have surgeries but allows us to make the decision of when with guidance and advise along the way. I have not regretted either surgeries as it helped tremendously with the ulcers which were very frequent and pretty bad in the first few years. She now only has them when she's a bit under the weather and they're barely noticeable.

Whatever you decided, know the choice is yours to make. Good luck.

my son has the same problem. I am very worried about his swelling upper lip. He is only one year old. He is teething and having blisters and inflammation in the upper lip and gum. The area is hard to clean, which makes the inflammation worse. I tried to clean his gum after he fell to sleep but it seems it did not help much. Sometimes he cries very hard. I know he may feel pain or very uncomfortable. That breaks my heart. Doctors suggest surgery but I am not ready for that. He is so young and I am afraid of the adverse effects of surgery but if the inflammation does't go away it is also not good. I would love to get in touch with you guys about what kind of decisions I should make and also need your ecouragement.