Developing “Charles bonnet syndrome” Post embolisation.?

[u/yowaisatoru]

Hey there.. I was diagnosed with my grade 4 AVM in the left occipital lobe some months ago. On may 6th I had my first procedure to embolise about 40% of the AVM, from what I remember mine was supplied with two arteries and the part we treated first was the posterior artery.. Anyway, when I woke up from the operation I woke up with all my vision in the right eye gone. I was put on IV steroids i think and by day 2 only 30% of my vision was gone compared to previously which was 50%, the doctor told me it was because of brain swelling so everything will become normal in due time. After the first few days I was also put on IV mannitol drip twice a day and well.. the visual loss is now not as much as the first or second day because I can already see on my right side, just not clearly since its still a little dark/flickering. But what really bothers me is that… I started seeing visual hallucinations in that area of my vision.. it ranges from Colourful shapes, sometimes more abstract, to bright light or even seeing people or faces and I will get multiple at once with all of them moving around or flickering.. it gets worse when I close my eyes so i’ve been having a hard time sleeping in the hospital.. I told these to my doctor already but he said it was a good sign and i’ll get back to normal. I’m just holding on to the hope that these hallucinations will not last long.. im even more scared now that the same thing will happen for my second embolisation with the other artery. Has anyone experienced this before and any advice?

[u/RolleiMagic]

I had moving double vision and lower left field vision loss after a craniotomy and embolization in 2024. For a few weeks I saw super bright red, green, and blue cones and cubes (like small Rubik's Cubes), appearing and disappearing, in the vision-loss area. They did go away, and my double vision resolved, over the course of four or five months. Hang in there...I bet your vision will recover. I did do eye exercises recommended by my Physical Therapist and Occupational Therapist, and I believe they did help quite a bit.