I had my surgery in July 2003. Was in a coma, rehab and nursing home. I went back to work for a while after that, then the seizures started. They became so bad that I am now on disability, divorced and living alone. All of that I can deal with but what I still seem to be having a problem with is guilt. When the surgery started my family was told it would be 5 to six hours and ended up being 17 hours with no guarantee that I would ever come home again. It makes me feel so bad that my kids and family had to endure so much. It didn’t bother me at the time because I was asleep for 2 weeks and so confused when I woke up that I really didn’t care. Now the seizures keep me from working and keep my kids scared to death. I have bitten off part of my tongue and to be honest I stay terrified. Regular seizures are one thing but gran-mal seizures are another story all together. I was just wondering if anyone has gone through these feelings and if so how do you deal with them.

You have nothing to feel guilty about. You are surviving and making it despite the seizures. Focus on you…it’s ok, and you need it. I had a petit mal seizure yesterday for the first time since my surgery 2 years ago. I’m seeing the doc next week and will let you know if I get any suggestions. Hang in there!

Kimberly I do understand what you are experiencing. I still sometimes feel guilty about what my husband and children went through and continue to go through. I’ve not had any seizures, thus far, but I am disabled now as well. I cannot do a lot of the things I used to do with my kids, including going to their schools to volunteer or go on field trips. I feel bad about that. BUT, my family is thankful that I am still here as I’m sure your family is you. We’re here dealing and surviving. We do what we can and cannot feel guilty about what we can’t. These AVMs were certainly not our choice, nor were the bleeds, nor the surgeries, etc.