Well finally I had a call from my neurosurgeon about my latest angiogram. He could not find any sign of a new AVM, so I was confused about what caused my bleed last October. He thinks it could have been a very small AVM or aneurysm? that bleed and then sealed itself. I have not heard of that happening before? but as long as everything is OK I am happy. It has been a lot of worry and hassle to get to this answer.
I found the notes from my first Gamma Knife check up angiogram in 2004, 2 years after my bleed
"There is no nidus remaining and no early draining vein.There is however a large dysplastic middle cerebral artery which is the only abnormality and no evidence of residual shunting" I suppose those abnormalities account for my remaining headaches and epilepsy.
Just thought I would write that in case anyone is interested
So now my AVM is officially “obliterated” and I can start planning a holiday, (money permitting)