Hi AllenSW,

I've got a 6 y.o. girl with NF1-related MM in NJ, USA and I totally know how you feel about the "blessing in disguise". The child is seen at CHOP for NF1 who don't like annual MRI's for NF1 (unless there are symptoms) and MM was only incidentally picked up on a brain scan 3 years ago due to concerns over unremitting headaches. Since then she's had the EDAS op on the left hand side (Dr Feldstein at NYP) and all is well so far. NYP also won't operate on the right hand side but just monitor it and hopefully that won't get worse. Part of me wishes they could just operate on that side too and get it over with, but I know the reality is that unless there is some significant lack of flow, the operation itself is pointless!

On your question; they've done the EDAS op on even in utero babies, so I doubt its due to age. Is she being seen by a MM specialist at Toronto Sick Kids? As long as thats the case I'd see little to worry about at all. Our CHOP Doc told us the NF1-related MM cases are a little different and the probabilities change significantly although she was clear that there wasn't much data around it. Generally, Toronto Sick kids will have seen quite a few cases like  this though so you can feel safe in their hands. If you wanted additional peace of mind though you can easily get a second opinion from Boston Children's Hospital for $500 who are the apex clinic for pediatric cases. Personally though if my child was being seen by a pediatric MM specialist at Toronto Sick Kids I wouldn't bother (I appreciate thats easier said than done with a new diagnosis).

Good luck with it all; once you've caught it (which you have) and its being monitored regularly by qualified docs (which it seems to be)  the prognosis is excellent!