Hi everyone, just and update, one year on since Katie had her craniotomy and embo, and today she is having Gamma Knife which will hopefully obliterate her last cerebral AVM…unfortunately i couldnt go with her today as the surgery is in Sheffield which is quite far away from me. I am extremely worried, i dont really know much about the Gamma Knife stuff…so anyone who knows more about it, i would love to hear from you…They have said that due to the proximity of the AVM to her optic nerve that she will loose partial if not total sight to at least one of her eyes…but will this be something that happens gradually or straight away???
Also her DNA testing came back and she does have a “peculiarity” in one of her genes but they are not sure as yet if it is what has caused both her AVM’s and PAVM’s also her VM’s…
We have all been recommended for testing…and when i have looked into it online it does have some links to HHT though none of us, not even Katie show any signs of it…
If anyone knows anything about the genetics side of things i am extremely confused and would love someone to talk to…
Hope everyone is doing well XXX
Katie is in my prayers and my fingers are crossed that the Gamma will obliterate the last of her AVM. Please keep us updates. Wishing her a safe and speedy recovery.