Just a recap I have had multiple sugeries and embo’s on my very large avm in my left forearm. I had appointments with my arm doctors and vascular surgeon today. Arm doctors finally said nothing more they can do for me. Vascular surgeon is willing to try a different type of sclarosing agent tomorrow but followed that up with your avm is in the worst possible spot for them. The main avm in my arm has completely wrapped around the main nerve that controls my hand. He basically told me it is highly possible that my nerve could get nicked or some of the junk they are injecting may leak out causing damage to my nerve which = more pain that they cant fix or loosing the use of my hand. A little nervos about this one. The larger avm that is left right now is twice the size of my arm bones and is locted directly between them. it goes from my wrist to about 3 inches shy of my elbow. Now I have 4 other veins that are starting to turn to AVM’s. It just seems this will never end. Mine has been so aggresive and just doesnt seem to give up. I know it doesnt compare to those of you that have them in your heads and brains and I cant even imagine what you go through just knowing what I go through. Sorry for the long post but I just had to say it to help calm me down. Not looking forward to tomorrow.
Andy, I hope all goes well today. It sounds like you have been through alot with this beast! I’m a “no-brainer” as well and have the AVM in my face. So I understand how it continues to grow and recruit other vessels and just be a general nuisance at the very least!
What embolic agent are they using? Alcohol? I’ve also been told by “there’s nothing more I can do” by doctors and thought I was just going to have to deal with it as it was growing, getting so much worse, causing necrosis, bleeding like a murder movie… But for the past year and a half I’ve been having alcohol embos and it is totally making a difference and I’m certain I’m getting BETTER!
I really hope that whatever they are doing with you today will be positive and that they can get through without more damage to your nerves.
Let us know how it all goes!
Shalon
thanks for the good wishes. down to one hand for right now. procedure took longer then they thought and i had to be put completely out. i was in the post op room for about 4-5 hours trying to control the pain. i avoided spending the night at the last minute. this dr was not using alcohol. i have had the alcohol in the past. the stuff he used is very aggresive inside the tumor but not as harmful if it leaks out. i had some damage from the alcohol leaking out last time. as of right now pain is at about a 5 on a scale of 1-10 and i can move ny fingers but not my thumb. that may come back but time will tell. well off to bed for me i will try to post more later if i can otherwise tomorrow. best wishes to all those have to deal with these things.
andy