Hi everyone, just found your site seems a great place for those who need advise with their AVMs.
My story is long but i will try to keep it very short as it goes back some 20 years.
Mines started back in the mid 90s, very small discoloration on my lip, as the years went by i visited the docs and then the hospital after a referral, and was told it was a Hemangioma, the surgeons etc decided it best dealt by embolisation with micro spheres, so this was done.
But did not work at all, only made my lip worse and had now grown almost 3 times normal size, which would sometimes decrease and then increase due to blood flow.
I did visit various surgeons and consultants over the years as my lip was causing major probs, but after my regular plastic surgeon retired i decided to try living with what i had thought was a Hemangioma.
Zoom a few years ahead, and by now i had started to bleed from my lip due to blood flow and the tearing due to swelling, i decided i could no longer live like this.
I was refereed to a new plastic surgeon who refereed me for another MRI, this time they seemed to have more info and said i had an AVM, and that it was inoperable due to the flow, i begged for treatment as this was now seriously affecting my life, they were reluctant to start but had said that if i agreed to have another embolisation then they would consider plastic surgery, i was reluctant as the last embolisation with micro spheres had left me in this mess. All the while my plastic surgeon offered me horrendous stories of what may happen including having to amputate the whole area, hemorrhaging to death on the operating table the list goes on and on, i did and do still feel he was trying his best to put me off all together and i did and do doubt his ability.
Now after many errors on their admin and communications, i finally went in for day 1 surgery embolisation with ONYX ( 5 hrs surgery ) DAY 2 plastic surgery.
Now here is the twist, after all of the scaremongering and serious horror stories from the plastic surgeon i still decided to go ahead, even after all their admin erros etc, again i still decided to go ahead, only to find on the day they had no record on me coming in for the day 2 surgery, but we got it sorted out, but by now my confidence in them was deteriorating.
The plastic surgeon then came through and started with the horror stories again to the extent that i decided to back out, but i had already had the ONYX done, so now i sit in a lot of pain as the AVM has been blocked off with the chemical but not removed, and my question to anyone who can offer some advise is can i actually have this chemical still in my lip blocking the AVM without it being removed, because i am seriously worried now and in a lot of pain. My surgeon really does not want to operate as he says he is very concerned about the bleeding.