Lymphangioma in Infants

[Bobbismom]

My 4 month old has yet to be diagnosed with Lymphnagioma, but that is what the pediatric surgeon is lean towards. Can anyone tell me about what exactly I'm about to deal with? Especially if surgery should become involved. Thank you!

[ilovefaina]

my  16 month old  just had surgery on her left hand and forarm. She had a lymphangioma partialy removed but it was to entangled in her bone and blood vessals so they couldnt compleatly remove it so it  will start to regrow. To slow the groth they compress it with a compression garmet she will wear one for the rest of her life. Goodluck and if you ever need to talk my email is ***@****

[Suz85]

My 18 month old daughter has a lymphangioma in her eye socket, which can't be removed entirely. About a month ago she had an operation to remove as much of it as possible because she could no longer open her eye. Her eye looks really good now but it's only a matter of time before it grows back. Has anyone else experienced (or know someone who has experiened) something like this?

[hotmom73]

I've recently been given a differential diagnosis of lymphangioma of my left eye.  At 34 years old, I was experiencing excrutiating headaches and my eye appeared to be bulging.  CT Scan and MRI showed a tumor--eye specialists say it's too risky to biopsy as it surrounds the optic nerve.  My vision is 20/20 in that eye.  They want to monitor it every 3 months with MRI to monitor changes in it's growth, consistency, etc.  As a young child my eyelid appeared to very weak--ptosis.  Any advice?

                                                                   hotmom73

[Nathy1996]

I have a Lymphangioma on my left arm. For 26 years it was nothing but an aesthetic component. I was a kid like any other and just had a "different" arm. I had to go through a reduction on my fingers when I was about 14 months old which did not go well and I ended up losing one of them. Now I have compression issues on my ulnar neurovascular bundle which means my life of surgeries is about to start as at this point it is too ingrained to be removed completely. For those with kids with macrocystic lymphangioma on face/neck hope has arrived in the form of a new medication called OK-432 which was originally developed in Japan and is now in phase 2/3 for FDA approval. There's a website for the University of Iowa with a whole lot more of information if you would like to take a look

But the best thing you can offer to a kid with lymphangioma is unconditional love and support. They will - like any other different kid - be picked in school, have their self-esteem tested and will need strong parents to re-assure them of who they are.

[CeeSeeNeeYah]

I am a mother from Northern Canada (remote isolated community) of a seven (will be 8 in May) years old daughter who has been diagnosed with lymphangioma of her left arm, it around her left side of chest and up the back side... to date the only treatment she has is an injections to lymp nodes. we have not discuss any surgery with the doctors at Sick Kids Hospital, she has been hospitalized to due infections at least 3 to 4 times a year since she's been borned, she was born like this.  I am hoping there is a treatment out that works, our docs did not suggest surgery at this time, of all the available materials regrading this is limited.  My email is ***@**** if you have more questions.