If you've had surgery, has anyone had blood in their ventricles?

The reason I ask this question is because I have not met anyone who had surgery (mine was a crainiotomy in 1993 (temporal lobe). I’m trying to figure out how common it is.

I had an AVM in the left temporal lobe that ruptured after having X-Knife surgery. Yes I was in a lot of pain, I actually wanted to die since I was in so much pain. I am usually some one who can bare pain. I have had 3 Csections and never had to take the pain medicine after the surgery. So yes I think I had what you had. I have tried to work also. But, everytime I came home and still had to cook and take care of my daughters and Husband. I would feel really bad and get headaches followed by having my eye turn red, stiff neck, and feeling like I was about to have a seizure. Yes, noone gets it. It is inside not something they can see. I think that also. So I don’t work. I stay at home. I help my husband as much as I can. I still do our taxes and pay the bills,but if I feel sick. I have to stop and slow down and there are those moments my husband has to watch me since I feel like I am about to have a seizure. It passes, the feeling. I know he will never trully understand what I am going through. But we have been married for 16yrs. We got married 1993. I found my AVM in 1999. We are still together. It has not been easy. But, it wasn’t until I bled that he finally believed I wasn’t well. He was in denial. Now he gets it more and helps me as much as he can.

Hi Kerry,

Sorry to hear of the struggle that your going through. My husband is the survivor. he had his avm in 1980 , I did not know him then.

but his mom wanted me to go to his dr. to find out what my life would be like , I did. but you really don’t understand until you live with a survivor. I love my husband with all my heart. And will never leave him.

I can only tell you that having a relationship with God has given us the strength through this.

Love and God Bless
Mark and Tina

We’ve stuck together. 32 yrs total and maybe 20 since the AVM showed up.

There’s lot of serious emotions involved around an AVM. We got some counseling (including the kids for part of it). That really seemed to help.

I wish you well.

Ron, KS

The AVM was probably the last straw in what led to the end of a not-so-good relationship for me. When I was home right after the craniotomy, he was less than helpful. I found myself still lifting the baby (which I was warned not to do), cooking dinner, cleaning, doing laundry, taking care of our three kids while recovering. I had to kick him out after that. His indifference to my situation was definitely too much to take. But, hey, I kept telling myself I got through something most people die from or come out seriously damaged from…I need to enjoy life and not waste time with someone who is like he was. Our breakup was one of the benefits of the AVM

Mine is challenging at the moment… but remembr we are survivors! it shoudl be better or for worse, sickenss and in health