Em, thank you for your reply, i just looked up your condition and am still reading.
Mines was at the very early stages diagnosed as a Hemangioma, later diagnosed as an AVM, to be honest i personally am not to sure which it really was/is.
My ONYX was done and was supposed to be in for plastic surgery the following day, but i decided i didnt want to go ahead, many many reason.
So went through the last week pumped full of strong painkillers in the hospital because of the pain the ONYX trying to burst out of my face, and it did with scary results, mines was pumped into my lower jaw ( feeders ) and also part cheek ( again feeders ) as well as most of my lower lip. Within a matter of maybe 1 day it had started to burst out of the weakest point of a blood vessel/artery feeders, i put up with the pain as was told this was normal and to expect Necrosis of surrounding tissue, but the ONYX had started to come out of most of my lip with excruciating pain, i really can not imagine going for months as you have unless you didnt have any breaches of skin tissue and all was intact.
Mines was bursting at the seems, in saying that there had been quite alot pumped in, anyhow my condition got worse, on leaving the hospital as it seemed they could do no more i went home only to later in the evening start hemorrhaging due to the ONYX dislodging and finally pushing fully through exposing an open blood vessel/artery. I was rushed to Emergency as was bleeding badly, finally stopped to be sent home.
Next day same thing and was kept in, only for things to get worse again, i was spewing blood from my lip and would not stop, so much so that i was rushed in for emergency surgery to have the AVM totally removed and the possibility of not coming through the op, but luckily i did and am still here to tell the tale, my lip has been reconstructed and all seems to be fine, it wont ever look as it did but i am just glad i am still here and never ever want to repeat this week, i was terrified basically sitting with and open blood vessel heavily bleeding thinking i was away to bleed out.
But as said am glad to be here still i really am. They way i see it now is ok my face has changed but that is for other people to deal with not me, i am not going to let it change my life and intend to continue as i did, but am sure i will come across others that will stare and ask, but thats their issue not mines.