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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Status-1yr old little girl with Macro-LM on left neck (http://birthmark.org/board/showthread.php?t=3833)

Aolmstead 05-14-2010 06:40 PM

Status-1yr old little girl with Macro-LM on left neck
 
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 05-14-2010 10:44 PM

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 05-28-2010 07:34 PM

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!


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