hey everyone- so I'm very confused or just seriously misunderstanding/misinterpreting info. My bleed was the summer of 2011. It just barely let me survive- I practically taught myself how to ambulate(via legs) again after being wheelchair bound for a long time. I suffered severer memory loss/impairment, numbness to my left side & right side of the face. I have vertigo and am deaf in my right ear. I also don't perceive depth anymore: I have a hard time balancing things towards environments. Although i have come along way I am confused. Most Dr.s I've seen can't believe I've survived. Ive read many posts all over the internet regarding AVMs locate around/or within the brainstem vicinity or directly, but I haven't read anything on someone who has survived a rupture in said location.
I have been hesitant posting this question/quandary for some time because i fear the worst for lack of similar success stories (not considering my own a success) or lack of actual survivors. Yet again this hope to find similar stories is a 50/50 because as comforting as it would be to find people with similar struggles that overcame this adversity; I honestly would not wish the nature of this malformation (let alone an AVM in general) on even my worst of enemies, honestly. A year later after release from the hospital i underwent cyber-knife surgery to obliterate the AVM. It takes about 2-3 yrs for radiation therapy to do its job but the handicaps I've acquired are not going to go away w/ the AVM being removed. It only removes the AVM;not the damage it's rupture has already done
If anyones' got a similar story they feel comfortable sharing or even good pointer in advice or pain relief (severe headaches, fatigue)or even ways to better cope w/ some of the changes this "AVM business" takes please get at me. Im very eager and hopeful to get any feedback at this point.
Honestly thank you &
god Bless you all :)