Hi. I have been this group I’ve been together with this group for over 21 years. I first found out that I had AVM May 2005 severe headaches I’m constant going to the emergency room and finding out that I have AVM my stories there somewhere within all the archives of things and here lately I found out on actually in 2020 I went and had a cerebral angiogram done and the doctor said that I was forming a clot at that time he says no big deal we’ll keep up on it. It was probably about the size of a needle and then he went and did another cerebral angiogram in 2025 May and now it is come to a much bigger needle to where I have to go in and have it operated on. This appears to be on my left side by my AVM and it’s gone into the aneurysm like I said they have to do a bypass to where they take a vein out from somewhere and put it into the other veins so we could get a clear flow so this is what can happen even 20 years later I thought I was cleared and come to find out I’m not.
Welcome back! Its been a while and I wish it was under better circumstances for sure. I imagine there has been some changes here in 21 years for sure, I’ve been here for 10. Where are you having the procedure done? I can imagine the disappointment and frustration after this long, but I imagine it is a bit of a relief they are able to do the surgery. Take Care, John.
Thank you John … it has been a disappointment I have avoided surgery all these years and know have to have it. I am going to UPMC in Pittsburgh PA.. they have treated me well so far, even for other procedures. Good luck and have a blessed life.
Wow, that sucks. Fighting an avm once is hard enough but to have to go again?
What options are they giving you versus what you want.
As I had already bled, my only option really was surgery, which was over 30 years ago.
Tim
Well Mr Tim: I have no other options. Surgery is it. I have done radiation, and Dr Lang from UMPC Pittsburgh PA says it was probably the radiation that caused my aneurysm. I had over 35 shot of it. I had a bad AVM.
Hello Sherry
Right so things to think about with surgery. Ask them where they are going to cut your head, pain management, size of scar.
Like I said, I could only have surgery and I still feel the scar is tender 30+ years later. What can they do to help with the scar?
I suggest getting a headshave so that after the op all your hair grows back together. The 1st Haircut after surgery was painful even by a careful trusted hairdresser.
Get ready for mega head pain as the drugs wear off. The slightest movement of my head on the pillow felt like I was going to have the worst migraine or blow my stitches apart. It’s necessary but wow did it hurt. Get visitors to only make short visits as I couldn’t manage any conversations.
When is the op planned? I hope it doesn’t scare you but I wish someone could have told me about Possible side effects.
Hi Tim
The surgery is August 10th. The scar will be on my left side from forehead to front of ear down to my jaw..I realize that I will be be put into a be of those head devices..than Dr says I should should be in for about 2-3 days and than get to go home. Pain management.. he said I would have the best possible care. Should I really cut my hair… nusre Julia said he would probably braid my hair and should have enough to cover up my scar. But it hurts .. I’m a chicken when it comes to pain. But I can stand alot thank for talking to me..nice to know you care.,