Doctors

[Guest guest]

Have had a day of neurosurgeons and clinical geneticists......and tomorrow a

MRi for Louis.

i have a big problem here, in the last ten years they've made some

spectacular progress in most areas of cancer (thank goodness) but every

therapy out there is designed for cancer and not for a condition that

produces benign tumors......well if you have a benign tumor you just cut it

out, fine except for Nf2 where that happens with unacceptable regularity,

and sometimes in places where this not possible. So, no, we have nothing to

offer you, just surveillance, and you are supposed to just go away and wait

for the next tumor to appear...

news for the Aussies....our geneticist tells me that they are thinking of

setting up a seperate Nf2 clinic at Westmead. Geneticist by the name of

Meredith , is organising it. Louis's neuro has been approached about

it....they are talking about getting some doctor up from Melbourne to train

a Neuro in AN surgery.

rosemary