I had a rupture this at the beginning of this year (headed into my 4th month of recovery). The AVM is located in my occipital lobe. I have known about it for a decent while but never felt ready to get it treated (it is quite large and was told treatment would cause risk to my vision).
I know everyone is different but wondering what people’s experiences were post-rupture with vision. I felt a big improvement last month with the “shade” disappearing but feel like it has been minor improvements this month. I KNOW it is improving but sometimes I question it because it has been minor as the days go by. Has anyone w/ a similar AVM/rupture have complete return of their vision eventually? I am seeing images coming back in my periphery and bottom though they are a bit dark and blurry. Central vision is a problem but seems to be improving as the days go by.
Curious on everyone’s experiences and what to expect with these vision changes.
Hi @Jade05! I’ve had multiple bleeds so it has been a complicated answer a little. After first bleed in 2000 after rehab I still retained enough of my peripheral vision to drive, 2nd bleed as well. After my third bleed I had further peripheral vision loss and by that point I was getting a little concerned about my vision. Then the stroke happened in 2018 and my right eye vision was gone. So was my driver’s license and most of my visual field. It depends on you and your doctors in deciding at what point is too much but for me after the stroke, I had to hang up the car keys.
How did you know your recovery had plateaued? Some days my vision feels somewhat clear and improving, the parts I can see at least, other days I get fatigue and my vision is not as clear.
I went a year or so and no change. Since then it’s only gotten worse. Did have an MRI and they discovered that I had experienced another action by way of a stroke.
I had a lot of visual problem after my bleed. There was no communication between my eyes and brain, which took months to heal. If I did too much my vision would blur.
I still get double vision at times, 30 years later, but I’ve learnt how to manage this and just find it more annoying and inconvenience most of all. I don’t drive now.
I found it useful to have my own tests so that I could record my progress because hospital eye check were not very frequent and totally subjective.
Did the blurriness go away as time went on in your recovery?
Some days, the parts I can see with my vision are clear. Other days, I do find it blurry.
I think I’m at the point in my recovery where it’s subtle changes now that often times I don’t know if I’m improving. But I also focus a lot on what I can’t see which hasn’t changed, and not the areas surrounding which is starting to coming back more and more.
Hi @Jade05
Yes as recovery time increased so did my vision. I had to do lots of exercises like looking at your finger and then bringing your finger to touch your nose but stopping when I could see 2 images.
After say 3 months I could read the headlines of newspaper articles and by 6 months I could read the whole article!
I didn’t enjoy this at the time but actually going to the library and reading large print books for both children and adults was useful.
There were times when I tried to put a key into the door lock but just ended up tapping the door because my eyes were confused where the lock was.
I too focused on what I couldn’t do, out of sheer frustration.
I still struggle to catch a ball now but some days it’s easier than others.
For me the vision got progressively worse. I lost peripheral in right eye, then left. Then vision gone at night, now I see out of sliver in left eye. Went to a neuropsychologist at Duke who confirmed through angiogram I had a stroke between 2018 and 2020. It was the stroke that caused vision loss. I can still see a little through a sliver in left eye during the day but otherwise I’m literally blind. Been that way since 2018.
Had it improved at all at any point in the beginning?
I had thought at times I see more and then lose it. Then I wonder if I actually was able to see those areas at all or my other eye compensating for the lost (which it did a lot in the beginning).
Unfortunately I can’t recall. At this point the first bleed from 2000 was 23 years ago. After a 2nd bleed in 2000 it lost partial vision on right side. Fast forward to 2010 and I had another bleed, and lost right side vision. In 2018 I had a stroke that did my vision in. I lost just about 75% of vision out of right eye and all out of left. I walk with a guidance cane. My wife thankfully can drive and we live about a mile away from the grocery store and get prescriptions from there and Medicare. It’s a ride for sure.
I’m now at the six month mark into my recovery. My doctor expects my vision recovery to slow down or stop. When I had started this thread, I had been frustrated as I couldn’t see much improvement as I had back in March, it had been very very subtle that even I wasn’t sure about. Then June to now, it is still small changes but I am noticing them a lot more than before, meaning it feels more like significant changes to me. Things seem brighter than before in some ways. I don’t want this improvement to stop. It is a bit discouraging that my doctor expects it to soon.
Hey Jade
Many of the medicos work timings out by what the textbook says. Some try to work it out via previous patients ie Patient ‘A’ took 3mths patient ‘B’ took 5mths, so the average is 4mths. But we are all individuals, we don’t all fit the ‘textbook’ definitions and we’re not all patient ‘A’ or ‘B’. I think we can all safely say we’d like to be better immediately, but the reality is that is VERY rare. I’ve often said ‘I want to be right and I want it right BLOODY NOW…’ but that thing called recovery is different for everybody, so really the medicos are having an educated guess. They don’t know for sure.
I say this because I’ve had a few neurosurgeries (6 so far) and none of them have been the same in recovery. Initially, I was told 6-8weeks and I got really annoyed when 10weeks later and I was still on this seesaw of symptoms. They did eventually settle but it wasn’t easy. Then came the 2nd surgery, I thought the first was a shocker, but the 2nd was much worse and I got into a bit of a self destructive mode trying to meet that 6-8week timeline. My body was screaming at me to stop, but I didn’t listen.
“The dr said 6-8wks, last op I took 10. But here I am at 12weeks and I’m still not right…” Then the frustration set in. GGgggggrrrrr and I (metaphorically) bashed myself for it.
Here’s what I’ve learnt: Our body’s DO NOT heal by a timeline or a timetable. Healing takes time and nobody can tell how long that will be. Some days I can see that improvement and think ‘WOW, look how far I’ve come…’ Some days I think, ‘why aren’t I further along than I am…?’ Some days my acceptance of THIS reality is easy to accept, but then some days I don’t want to accept ‘THIS’. Who would?
The reality is we have no choice, we can fight against it all, but we’re only fighting against ourselves, which is a waste of time. “Don’t rush it…” became my motto and for my last couple of surgeries I’ve tried to remember that, but even today, 10 yrs on from my last, I still have that internal battle when I’m symptomatic.
I’m a little surprised your doctor said the recovery may stop.
But then I’ve had doctors say i won’t walk but hell I found a way with the help of great physiotherapy.
I kept crashing my bike until i taught myself how to ride faster. It doesn’t work every time and can be painful.
Don’t give up and back your self