Losing my vision. Occipital lobe AVM

I have an AVM in my occipital lobe, my right one actually, and I was just wondering if there was anyone out there that had one removed form the same area. I am desperatly afraid of losing my vision when they go in to remove my AVM. Can anyone give me any help?

Hi Lyssa,
I feel your fear also. Partial Paralysis on the left side of my body was a risk of surgery based on where mine is located. Because of the fact mine had not bleed for 33 years made me feel like I had some time to do some research and get some other opinions. I had 4 opinions by top Neurosurgeons in my area and got 3 different answers. Most of which recommended what they specialize in of course. It sounds like yours is roughly the size of mine. Have you considered, or is Gamma Knife or Cyber Knife an option for you. I explored all options and choose Gamma Knife as it has a pretty good success rate for small AMV’s. I’m waiting for my date to be scheduled. Choosing the right team is also important to me. When it comes to my brain I want nothing less than the best.
Best of luck, Stay positive and in control.

Thanks for that info! I will be meeting with a neurosurgeon next week and I will ask when he is going to use. I actually don’t know much about either the Gamma knife or Cyber knife. But I am 100% confident in my neuroradiologist, he promised me that during either the angiogram or the embolization that he would do tests to make sure he wasn’t messing with anything that could cost me my sight. But there is still a risk.

I will look into those things, and thanks again.

My AVM was in the right occipital lobe also. I had a major bleed, so no options for me, only craniotomy. I lost most of the vision in my left eye but it was a result of the bleed and not the surgery. I tell you this not to scare you, but to let you know that it is difficult to have lost sight, but it really is not terrible. It takes a lot of getting used to but I learned to compensate. Not that I still don’t walk into walls occasionally, but not as often :slight_smile: I hope your sight is not affected, but if it is you will learn to compensate as well and you’ll deal with it. Good luck!!

Hi Lyssa,

I lost some left side vision due to an AVM bleed in my right occipital lobe and visual cortex scarring from my cranial operation. The way my neurosurgeon explained it, my central and right side peripheral vision in both eyes would not be affected, only my left side peripheral vision in both eyes. In my case that’s exactly what happened. It has taken a while to get used to and I still bump into things, but I am really happy with the outcome. Good luck.

I have vision loss due to bleed and surgery…it is something I have been able to compensate for. I am 2 years out and I feel like every day that goes by I get better and better at getting around. If I am really tired or distracted, I am likely to run into someone or something and it just always reminds me to “look down and to my left”. That has been my mantra for the last 2 years! Good luck and I hope it all works out for you!