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-   -   microcystic lymphatic malformation + CVM + KTS? (

ATXMom 03-07-2013 06:58 PM

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

Ballroomann 03-20-2013 05:25 AM

Hi Anne,
I'm afraid I can't be much help, just wanted to offer my thoughts and prayers for your daughter. I was unaware that a person could have both venous and lymphatic malformations, but then again I am new to this world too. My only suggestion is to get many opinions--write to the experts on this site, they are such an amazing resource! We made the unfortunate mistake of not questioning our doctor or his diagnosis of my 18 month old son--but I am learning that these malformations are very commonly misdiagnosed. Our dr. knew nothing about LMs and performed surgery on what he thought was a cleft cyst. Luckily he is an amazing surgeon and my son looks awesome, but he still wasn't the best person to see my son in the first place. Live and learn!
It was only after surgery that he was again misdiagnosed with arteriovenous malformation in his neck, but I knew we needed a second opinion, as I was convinced it was lymphatic malformation instead. So I did more research to find a doctor who specialized in LMs and he confirmed my suspicions--he has macrocystic LM. As moms we have that gut instinct that we can't ignore! Good luck, and if you don't feel confident in your doctors keep searching!

ATXMom 07-14-2013 05:01 AM

Thank you for your prayers. It has been a very long six / seven months. We really like the team we have now -- Second opinions are so important! Hope all is well with you and yours.

missy 07-14-2013 03:52 PM

I'm so glad you have a team that you like! I know it's very likely that you had to pick and choose from several practices to put your team together.

How is Elizabeth? That is such a hard age for a kid, so many changes. How is she holding up?


dancermom 10-09-2013 08:12 PM

ATXMom, if you have checked out the Facebook group "Klippel Trenaunay Weber Sydrome," I suggest you join it. Lots of parents there whose kids have KTS!

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