wonder if anyone in the UK has had the Chemical OYNX used for treatment of their AVM, mines is not in my brain but facial, i know usually that after embolisation with OYNX the AVM is usually removed, but on my second day surgery to remove the OYNX filled AVM my surgeon basically reiterated what he has always said that there is a high possibility you will not survive, so i declined treatment and am now left with this in my face.
Just wonder if anyone in the UK has had any experience with this yet.
Wish you well Dave. Out of interest, is the Onyx visible (ie. Does it make th AVM take on a different colour). Where did you have your treatment? Mine is on my back. I suspect treatment is on the cards at some point.
My AVM is at the front of my brain. I had ONYX and was told some pretty scary stuff, it's been two years since my treatment and I've never been better. I'd weigh up all the options, chat to everyone you you can and then decide. Obviously I'm in a different boat to you, but I'd like to know how you get on.
BTW I was in Royal Preston and Royal Hallamshire Sheffield for my treatment.
thanks for the replies guys, and wish you all well.
The ONYX is visible through which was one of the feeder arteries to my AVM only thing is the skin surrounding was so thin you can actually see the ONYX, but another issue is the skin surrounding is starting to die off i think and am in great pain.
Am kinda worried its going to break through, as its not getting any better, i suppose if i had gone ahead with the surgery to have my lip/ONYX debulked as they say i may not be in the position that i am now, which is my lower jaw from lower lip is pretty much solid and numb.
here is a pic, my AVM was pretty much 3/4 of my lip, and was told i must have it done in case of a fatal bleed. The ulcer and skin dying i would imagine is the weakest point of the artery.
Really dont want to be posting up pics on here find it very embarrassing, have had nearly 20 years of questions and people asking whats up.
was admitted back into hospital for 3 days as the pain had became so bad, the ONYX is leaking from one the the blood vessels it was put into on my lip, this is causing the surrounding tissue to die off also which is causing the pain, i have asked the so called specialists but none of them are giving any answers that in still confidence, one though it was micro spheres another though the black was dead tissue, also none of the care staff have any idea how to deal with my condition.
This is causing serious worry, i spoke to one surgeon and asked what if the ONYX comes free, his answers were dont worry the OYNX you see will wear down but if it comes out and bleeds just grab you lip and get to the nearest EMS !!!!! shocking.
On being discharged from hospital last night with my condition being worse than when i went in, morphine, codeine, not easing the pain was put on Tramidol, and a load of other pain meds.
No one here can seem to help or really know what they are speaking about, was told on leaving that after this type of op your condition is expected as is death of any tissue, so basiclly go home take the pain meds and wait for your lip to die. 3/4 of my lip is full of OYNX as is my front chin and part cheek, am really at a loss.
