I have a right occipital lobe AVM and I have seen John Laidlaw at the Royal Melbourne hospital. He has advised that surgery is the best way to go but that there is a high risk of me having a left Homonymous hemianopia, which means I will lose my left visual field vision in both eyes.
After speaking to a number of friends and acquaintances, many have suggested that I seek a second opinion, e.g. From Prof Andrew Kaye.
My question is whether anyone has been seen by either John Laidlaw or Andrew Kaye and what your thoughts were? Should I be seeking a second opinion?
Hi Kate, I used to live in Melbourne and had a right occipital/parietal AVM. it bled in 2008 and I also had a stroke. I had an emergency craniotomy to remove the AVM at the Alfred. - my surgeon was Professor Jeff Rosenfeld - he is world renowned and apparently the best. I woke up from my craniotomy with a full left hemianopia. I was told it was a result of the stroke but I believe it was the craniotomy as all my other deficits from the stroke (paralysis) came back completely but not my vision. I have however learnt to live with it and life does go on. You can still see everything there is just a blind spot on the far left. The Prof operated on Jim steins, the footballer. I watched an interview where he told Jim he could lose his peripheral vision and that's when I knew it was most likely the op not the stroke but i'll never really know. All I know is that I'm lucky to be alive and living with my vision loss is better than not living at all. The vision loss is tough to accept. You can't drive anymore (although in Victoria they do let you take your test again to see if you can have a restricted licence).... you can still see everything and you train yourself to scan to the left. IT's been 6 years and I still walk into people coming from left field ;-( Definitely get another opinion - this is your quality of life you're dealing with but it's a risk not a definite. I'm sorry if I don't sound very encouraging but there are so many people on here who have had a craniotomy but haven't had the vision loss. I think we are a minority so the odds are in your favour. Good luck with your tough decision. I wish you all the best, Caroline xo
Hi Caroline. Thanks for your message. So sorry about your hemianopia, but that’s so great that the stroke consequences have resolved. Yes I agree with you that I’d rather be alive with a hemianopia than not at all.
Thank you for sharing your story, it helps to hear real life experiences and daily challenges of someone with a hemianopia.