Just got very devastating news today from my daughters neurosurgeon who performed gamma knife on her three years ago. Her MRI showed that her MRI is just as large as it was three years ago. They believe it either had regrowth or her emboliztion opened up. There was also another complicatio which increases her risk for a bleed. They said the AVM is draining into a vein which is swelled/enlarged. We meet with a neurosurgeon, Dr. Tyler Kabara on tuesday to discuss her MRI and surgery. I am trying to perpare my husband and I for surgery. I know we will have a long road ahead of us. So scared for our 10 year old daughter. So disappointed that after three years of waiting for the gamma knife to work, we get this news. I would love to hear from other AVM survivors that had crainiotomy's and there experiences. Also if you have any advice for us and any questions you think we should ask her surgeon on tuesday.
My son had his crainiotomy last April. He also had embolization the day before his surgery.
You should ask the surgeon the risk and possible complication/recovery period/length of surgery etc. They probably could give you some ideas depends on the location of the AVM.
My son also had a angiogram right after the surgery to make sure they got it all! He also had a CT scan the following day to ensure there is no residual. They also did a 9-mos follow up angiogram to ensure the AVM is gone completely!
I was so worries before the surgery and my mind was full of negatives..
Actually, the surgery is not as bad as what we think. Be positive. Lots of people have successfuly surgery. All the best!
Lilian
Thank you Lillian for sharing your story and your advice. We are so scared and it helps to hear your positive feedback.
Hi April. This link has a lot of good advice…
http://www.avmsurvivors.org/forum/topics/questions-for-my-neurosurgeon
You may wish to contact Tina White. Her daughter is about the same age as your daughter. This young girl has had 3 craniotomies!
http://www.avmsurvivors.org/profile/TinaWhite