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AVM Survivors Network

Vision loss and progress over time

Hello,

My name is Grace. Last year my boyfriend had a seizure caused by an AVM in his brain. The doctors had planned to remove it in a month or so but unfortunately it hemorrhaged before that and needed emergency brain surgery to remove the AVM and save his life. He lost his peripheral vision on the left side of both his eyes and made his vision blurrier in his left eye.

Since then he’s adjusted quite well. He still pursuing his passion for photography and sometimes it feels like he never lost and of his vision at all. The doctors said that because of his age (22) there’s a good chance that some of his vision may be recovered. He’s still sometimes get worried that his vision is getting worse, but he can’t really tell if it actually is or if he’s just psyching himself out.

Has anyone who’s had vision loss been able to recovered their vision over time? Is the damage permanent, improve or worsen over time?

All responses are appreciated! Thank you!

Welcome to our community! I had a bleed back in 2016 and while I had some effects, vision wasn’t so I can’t be much help there. I know there is a number of folks here who have had their vision effected to varying degrees. They will likely pass along their experience, and any changes over time.

It’s great to hear he is still pursuing the photography, and I totally understand if he is hyper sensitive to any “maybe” changes, both good and bad. I still am, and am pretty confident I always will be. The changes hat occur with the brain over time are amazing, and at 22 he is still young. I’m a big believer in staying as active as possible, having a healthy diet and trying to get the rest the body and mind need. All of it is difficult at time, but I think it has really helped me. Mind you after this past week I need to do a reset on the diet side! Sorry to ramble, and once again welcome! Take Care, John.

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My AVM ruptured when I was 50 and caused homonyous hemianopsia so I lost perphreal vision to the left and down in both eyes; I it has not improved or gotten worse in the 4 years since the rupture; as you said your boyfriend is young so there’s hope!

hey there maybe i can offer some hope. 6yrs ago at age 28 i had avm removed and part of my right eye vision was affected. right after surgery i couldnt see the nurses on right side of bed- i had about 50% in that right eye. fast forward to now id say i have 75-80% in that eye. i used to run into objects or ppl alot so i tried doing eye workouts if u will. id keep my eyes focused in one spot and just tell my brain to see what i knew was there… and it has truly helped. now i cant say if im actually “seeing” or if the brain manufactures images thats close enough- i dont know. BUTTT i do know that vision has been reclaimed in my circumstance. practice makes perfect and good luck!!!

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Hi there! A year and a half ago, I had an unruptured AVM removed from my occipital lobe. I ended up losing peripheral vision in the left side of both my eyes . I was 38 when I had the surgery and my vision initially got better days after the craniotomy but at my first post-op eye exam a month later, there had been no improvement. My neurosurgeon said that once it stops healing, it does not restart. I understand what your boyfriend means when he doesn’t know if the vision is getting worse or it’s paranoia. My theory is, the brain is compensating for the vision loss. I feel like at times, when my brain is not commenting, I develop anxiety that my vision is getting worse but that’s not the case. Please tell your boyfriend to fear not, he’s got age on his side! You get used to it after awhile. Sometimes I get frustrated by all the things I break because I didn’t see it, bruised hips and broken toes but I consider myself incredibly lucky!

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Hi Grace - your boyfriend’s story is very similar at my husbands. 2 years ago (almost to the day) Steve had 2 brain bleeds and needed emergency surgery to remove his AVM. Steve lost right peripheral vision in both eyes. Some vision has returned but he still has a deficit. He often tells me of “spinning” type lights in his side vision. Not sure if anyone else has had these? He is having a 24 hour EGG next week to try to capture what is happening in that area of his brain and if it is vision related… Steve continues to stay positive and hopes his full vision may return one day but really he understands how lucky he is to have survived two quite massive brain bleeds and the following surgery. I wish your boyfriend every success in his recovery. I always find it comforting to hear other stories and know we are not alone in this on-going journey. I hope the new year is a happy and healthy one for both of you.

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Hi judy! I know EXACTLY what he means by spinning lights. I call them kaleidoscopes and they are worse when it seems I’ve have too much sugar, coffee, stuff like that.

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I wish you two the best. Please keep us updated.

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Hi Lisa. Steve and I are so pleased to hear someone knows what he is taking about. Are yours affected by light conditions as well? Steve’s are worse when it is dark or overcast. The doctors took Steve off his anti seizure meds 18 mths post surgery. Unfortunately, the ‘spinners’ as he calls them worsened and in August had a grand mal seizure. The Neurologist is very interested in the ‘spinners’ and next week Steve is having a 24 hour EGG test to try to capture brain activity when it happens. They believe the spinners could be brain activity or small seizures caused by the damaged area from the bleeds and where the AVM was removed. He is back on Kepra and the spinners now only happen approx 1 per week. I really am grateful you shared this to know someone else is experiencing this too. Thank you and we wish you a happy and healthy year ahead too.

Mine don’t seem to be affected by light but light that shines directly into my eyes can cause problems. For instance, a flash of light from a car driving by has cut my vision in half before. Or a flashlight in my eye will make me see tracers for a long time or give me a headache. I’m glad to hear the neurologist is looking into Steve’s, I’d love to hear the results if you’d care to share with us. I’ve always chalked mine up to brain damage that I have to live with, now I’m really curious!

I no how he feels. I had my AVM rupture a long time ago now but it effected my right peripheral vision in both my eyes. As for my vision as in sight it’s funny. My left eye is 20/20 but my right eye isn’t the best. I sometimes put a contact lens in it. He’ll have to slowly get used to the difference of his peripheral. For instance when at the movies I sit on the right side because of my right peripheral damage. As for driving it may be a bit of a trick at first. I do drive but if I’m driving in a city I feel a little nervous when in 8 lanes of traffic.

Thank you everyone so much for replying and offering your advice.

I showed this thread to my boyfriend and its nice to know that there are people out there going through the same thing, fighting the same battle. I think its made him feel more secure and positive in his future despite the difficulties along the way.

Comments about how to adapt to his new vision are really helpful. Like how the brain will try and fill in information despite the lack in vision or sitting on the opposite side of where you lost vision at movies.

I wish everyone luck moving forward. Thank you!

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Hi all,
Just to add my own visual experience to yours. I was diagnosed 9 months ago with a right occipital AVM following a moderate bleed which has left me with lower left peripheral loss. As I understand it, the field of vision is not lost in both eyes because it’s not about the eyes themselves but the processor (brain). For as long as I can remember I’ve had occasional visual disturbance on my left, sometimes shimmering and sometimes I can ‘see’ my pulse. I always felt this was in my left eye, but now realise it was in both eyes, but that’s hard to notice because your right eye has inferior left peripheral and vice versa - because your nose is in the way! So while my charts show that my issue is left eye and left peripheral, that’s because you won’t notice the right eye/left visual field loss as much because you have a natural defect or narrower field due to your nose. Try closing your left eye and look down to the left. So I believe that field of vision issues caused by AVMs don’t relate to one eye or the other but rather what your brain can see in totality. If anyone knows different please correct me, I’m not a neurologist!
I find that when I walk past certain objects on my left they shimmer. Not so much lights, more like disturbance. This seems to happen mostly with bushes, railings, any non solid or diffuse object can create this sensation. I probably notice it once per day on average. Aside from that I do tend to bump into things / people on my left from time to time. The one that always gets me is someone pushing a supermarket trolley to my left, I just don’t see it until I walk into it. People must think I’m drunk!
One nuance of my AVM is that my neurological assessment indicated a visual memory defect. I can remember long numbers verbally but performed poorly in replicating pictures. This was noted as consistent with my brain damage. I don’t think I really believed it until I played my four year old at the memory cards game over Christmas and she beat me 19-3.:crazy_face:
Lastly, I always found that my visual disturbance was made worse by coffee and stress. I loved coffee, my last one was an hour before my haemorrhage. I still drink alcohol in moderation and don’t find any problems with it. My neurosurgeon said that’s fine. I’ve also given up stress!! (Well I’m trying…).
Happy New Year to all.
Jonny

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