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AVM Survivors Network

Lip AVM embolised using ONYX


#1

Am just back from the hospital discharged Thursday, but after the ONYX am in serious pain and swelling, have just went back to the Hospital for pain relief.

Does anyone have any advise after having the ONYX used to cut off supply to an AVM.

i was supposed to have second day surgery to remove the lip AVM filled with ONYX, but after months of trying to decide after being put off countless times by my surgeon, i still went ahead, that was of course until i went in on this occasion only to be told he had no idea of my surgery, said i would then be slotted in but by now as has always been the case my confidence was disappearing with his ability.

I was then again bombarded with life threatening possibilities as well as possible major disfigurement, and so cancelled after the OYNX was done, am now in serious pain due to the ONYX.

Am afraid i have no private medical healthcare plan, and so cant travel for treatment to the states.


#2

I am so sorry you are going thru this! I don’t have any experience with onyx ! God bless you and we are praying for you! Facial avm’scan be so difficult to treat. My son is on his 7th procedure and he is only 4. Also check out facial avm page on Facebook! There are many that travel to the states and may have some support for you


#3

Dave, also join the UK group (click groups again to find it), as those members may have suggestions on doctors in the UK.


#4

sorry to hear you are in so much pain dave. i had my avm embolised with onyx and it 2 was very painful but the pain improved when i had it removed. i still get pain now tho. where are you being treated and will they do the removal surgery in the future?


#5

thanks for the replies, my plastic surgeon has always been reluctant to treat, this is understandable but i was asked to have another embo done before plastics and i agreed only to be meet with no positive feedback but instead told of worst case scenarios including death, amputation, facial recon etc the list goes on and on, my nickname for this particular surgeon is Dr Doom.

So the outlook at the moment is it is not to be removed as i declined after the first day embo with ONYX, after trying to manage the pain since Wednesday unsuccessfully i am just home from meeting my Radiologist whom is one of thee nicest people i have ever met, her advice was reassuring.

I was concerned leaving this OYNX in my body as it turns hard. But as the plastic surgeon keeps putting the fear of death in to me, seriously its getting quite annoying, my wife and i decided it is most definitely better for me to be here than possibly not or at a worse place than i am currently. So am afraid no removal, but good thing is no chance of bleed from it as is hopefully blocked. Currently loss of feeling from lower lip down to just under lower jaw, have been told my whole lower face arteries have been injected with ONYX as well as extending branches, lower lip is now solid with no chance of ever softening.

How did you deal with the pain, i have tried oral morphine, codeine, and all the usual anti inflammatory and painkillers.


#6

Hi Dave, I'm really sorry you are experiencing this much pain. The best we can do in these situations is take it day by day (or minute by minute). It's wonderful that Onyx was successful at what it was intended to do!

It's kind of eerie how similar parts of our stories are. I have a maxillofacial avm, and when I went into the hospital to get the Onyx embolization, I expected it to be immediately followed by a debulking surgery by a plastic surgeon. I found out soon afterward that the plastic surgeon wasn't even in town at the time! When I finally saw him (a few months later) he and his colleague thought the surgery would be dangerous and unlikely to give me a positive result and basically said, "no, we won't do it."

Please do hold out hope about nerve regrowth/repair. Mine took six or more months to heal themselves but they finally did. Keep us posted on these boards, too.


#7

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.