Hi everyone
I’m new to this group. I have a five years old son with a cerebellum and brain stem AVM. It’s both large and deep. He had the hemorrhage when he was one week old and now he is severly disabled physically and mentally. Lately I sent his images to few recommended doctors and there responses was:
Dr Spetzler said not operable. While Stanford(dr Steven Chang) wanted to study the case more but said might recommend Cyber knife. Finally Dr Michael Lawton suggested combination of Gamma Knife and surgery. Three of them can’t guarantee any improvement of symbtoms which might be due to hemorrhage not AVM but the goal from the intervention is to prevent any future bleeding.
I feel it very hard to make a decision. I beg anyone with same experience for an advice.
Hi Karim.
I’m so sorry to hear about your son. I’m in the UK but also have an AVM of the Cerebellum. Mine is large and deep as well and I was told long ago it was not suitable for surgery. Gamma Knife and embolisation were suggested but for me the odds of deficit over complete removal were not good enough. I am 43 not 5 though. Your son has his whole life ahead of him… The only advice I can give unfortunately is to go with your heart and your head… What are the risks of further rupture? What might further deficits means for your son? What are the odds of success? I wish you all the best of luck with whatever you decide.
Thank you for your support. I wish you good luck. Please keep my son in your preyers.