Lymphatic malformation w/multiple venous anomalies
I am just reaching out to see if anyone has a similar situation.
My son, Zach, is now 10 and was diagnosed with a lymphatic malformation of his forehead, cheek, palate and orbit at a very young age. He had two resections for removal of the orbital and forehead component as well as multiple mouth and eye surgeries. (cant even remember how many at this point)
Back in 2004 he had a cavernous angioma removed from his cerebellum then this year he had one removed from his frontal lobe. Recently, the orbital component has increased greatly in size....could be more vascular than lymphatic we dont know. Plus he is showing signs of a calification in his neck now, possibly from another vascular malformation.
What I was trying to find is another family who might have a similar situation. We know at this point Zach is somewhat of a statiscal anomaly, the docs in Phoenix decided everything is related and that he just has a very complex vascular system. Intracranially he has quite a few abnormalities but it appears that any time we have a surgery we take a step forward in one way but then a step back in another.
Is there anyone out there in a similar boat??