Hey friends! I was diagnosed with a grade 4 AVM in my right occipital lobe. I have started treatment with 3 embolizations at Stanford in California, and have been told by my primary neuro team (and a second opinion at UCSF) that a craniotomy will be needed to remove my AVM completely. I'm stoked that this is possible, but the UCSF folks suggested gamma knife radiosurgery to shrink the AVM more, wait 3 years, and then do a craniotomy in hopes of preserving my lower left quad of the visual field. My primary neuro team; however, suggests going for the craniotomy right now in hopes that takes care of the whole tangled mess.
Either way, I will lose the upper left quad. I'm really looking for someone with a similar deficit to speak- or email with. Does a quad vs. the whole left field really make that much of a difference? I'm all for getting rid of the AVM as soon as possible (it hasn't bled yet, I have no symptoms). I'm just not sure how a hemianopsia will present itself, what I need to prepare for, or if I should consider the gamma knife and wait.
I'm thinking that it might be hard for me to work with this deficit. I live in a rural area, so not driving is an issue. My job, it entails reading and writing on a computer and doing rare plant surveys....so my vision is key. I get it, I'll have to change my lifestyle, but I'm just looking for input. Anything would be greatly appreciated!!!
I can’t speak to partial field cut vs total field cut as mine has always been total left visual field cut. It takes a long time to adjust but you will. You will bump into things, a lot! You’ll learn to scan to the left all the time. For reading I have a pair of prism glasses that made a world of difference. I couldn’t read without them. I can read and use a computer with no problems. I cannot drive and probably never will again. That part does suck, quite honestly. There are other issues associated with hemianopia in addition to the vision loss that may or may not occur with you. Instability when walking, unsteadiness when changing walking surfaces, fear/anxiety in crowds, loss of sense of direction. Not trying to discourage you, just want you to have as much info as possible.
I had my craniotomy August 2014, and had total left visual field loss, but I would think either way it will be a shock to begin with. I went to sleep and every thing was looking normal and I wake up and it's like a black wall was beside me on the left side, it is hard to explain but you get use to it. I put hot pink duck tape on the left side on my Kindle and increased the size and practice reading till I trained my eyes to scan to the left so I don't use the Prism glasses, but I read a couple hours per day which may have helped. I can't drive, check your State a few states allow it.
I can't go to the store by myself because people run over me, so I have lost a lot of my independence which is a hard thing to adjust to. I went in thinking everything would be just fine and had no clue and was blindsided (no punt intended) It's not going to be a cake walk but you will adjust and be fine I just wanted you to know some of the things that I didn't