microcystic lymphatic malformation + CVM + KTS?
Elizabeth, our 11-year old daughter, was recently diagnosed with a minor congenital venous malformation in her lower-right leg, and our doctor just shared that they believe she also has a microcystic lymphatic malformation in the same leg.
We want to ask the best questions of our doctor, but don't really understand the finer points about this and can't find much information online. What does this mean? What do we need to look for as parents?
Can someone please help me understand more about microcystic lymphatic malformations? Is there an alternate name for this condition (maybe there's more info out there under the other name and I just haven't found it yet)?
Also, Klippel-Trunouny's Syndrome has not yet been compelely ruled out and I'd like to know where I can learn more about that, especially if it causes any ancillary or additional issues/problems elsewhere in the body? (NOTE: She doesn't have the port-wine stain, but does have the other markers.)
Although I feel lost and alone right now, I'm working hard to find the information we need and also accept the unknown with grace. Thank you in advance to anyone who replies. ATXMom a.k.a. Anne from Austin, TX