Status-1yr old little girl with Macro-LM on left neck

[Aolmstead]

I'm back on the message board in hopes to get some support and advice re: my 1yr old daughter with macro LM on neck.

Quick recap-
Nov. 2009-at 6months she was diagnosed Macro Lm of neck-rushed to ER
Dec. 2009-Sclerotherapy treatment (doxycyillin agent) on her left neck
Dec.March-The left mass subsided significantly and she looks normal
March 2010-follow up MRI-unfortunately bad news-residiual fluids and cyst remains deep within her chest bone; near her left lung; significant fluids; no physical swelling; it's all internal
April 2010-Las Vegas ENT referred us to UCLA to see specialst-Dr. Vinuela-who observed my daughter and said to wait and observe; recommended to do a bronchoscopy to examine any compression on wind pipe; again wait....
-Las Vegas ENT specialist did bronchoscopy-results negative- windpipe is fine; no obstuction; does not interfere with breathing
May 2010-Follow up check up with ENT doctor with my daughter condition
Wait Wait Wait.....that's all I was told......a bit nerve wracking but because she is so little, they recommend to wait till she gets bigger and her body will respond/recover better.....

Doctors want to do another MRI in Sept 2010. (6 months later); till then wait...she may get colds through time; the mass on neck is starting to show again; bulge out when she coughs or cries alot; physically she looks normal but when she coughs definitely there is a noticeable 'bulge' around her neck. poor thing.

UCLA doctors recommended percutaneous embolization when she gets bigger. Has anyone done this?

With proper treatment, will my daughter physically look like a normal child till her adolescent years? I just want to know if she can grow up looking normal?
Anyone???

Please share your experience. Thank you.

[missy]

I have no advice. Just wanted to say hi and glad to hear from you. I know you're frustrated with waiting and I'm sorry about that.

Hang in there. If no parent comes in to answer you soon, I'll start looking around for one again.

Missy

[sweet pea]

I personally haven't heard of doing percutaneous embolization, though I'm older so some of the treatments out now weren't around when I was diagnosed. I don't really like the word "normal", as I don't think it's something you should be striving for. I would more say as long as she's healthy, she's good to go. She can do anything any other child can do, but looking a little different isn't a big problem I would worry about. I have lymphangioma myself, don't exactly look "normal", but that's perfectly fine with me. good luck!