My grandson is 19 years old and had an AVM event in his brain on August 14th, 2012. He has been in a medically induced coma since then. He is currently fighting extremely high fevers and pneumonia. His AVM is between five and six centimeters large and is to big to be surgically removed. It is very difficult to get information from his doctors. We are told to be patient and that it is just a wait and see process. He has a tracheostomy, a picc line and a feeding tube, which lead us to believe he will be in a long term care facility. Thank you for any information.
Sorry for the situation that you are in, but waiting is about the only option you have right now. Once things get more under control and he's stable, then you can get more info on what treatment options might be available.
Once he becomes stable, I would encourage you to seek the guidance of some top AVM DRs in your area. You want the best of the best in treating large, complex AVMs to work on him.
Best wishes, and feel free to post more questions here as they arise. It's ok to rant here as well......