Vascular Birthmarks Foundation Forum - View Single Post - Status-1yr old little girl with Macro-LM on left neck
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Old 05-14-2010, 07:40 PM
Aolmstead Aolmstead is offline
Join Date: Mar 2010
Posts: 31
Smile 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?

Please share your experience. Thank you.

Last edited by Aolmstead : 05-14-2010 at 09:08 PM.
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