Cerebral AVM vision recovery questions

Hi Everyone,

I am recovering from a crainotomy procedure I had on October 8th, 2009 as a resurlt of a cerebral AVM I had which bled out on October 4th. I’ve been at home recovering since the 15th and am feeling great with the exception of my impaired vision.

I feel like my vision is getting a litle better but the gains seem so small that I’m questioning whether I’m really making progress or if I’m just being optimistic. No one has really given me any indication of what I should expect as far as how my vision mau or may not recover. If anyone has any experience with this that they could share it would be most appreciated.

Thanks everyone!

Ryan

Hello Ryan. What type of vision problems have you been having? The reason I ask is that the different problems have slightly different causes and different results to expect. For example, my craniotomy left me with double-vision for a month or two afterward, as well as the loss of half of my field of view in both eyes. My eyes were also overly sensitivie to light for a while. Well, the double-vision went away and I was able to see quite clearly afterward, but unfortunately, the vision that I lost never came back. (My craniotomy was 4+ years ago.) Nevertheless, my neuro sent me in for vision tests every couple of weeks for the first few months, just to track my progress. I now techinically have 20/20 vision, but the entire right half of each eye is completely blind. it took a loooong time to get used to that, and even though I have good vision and do not need glasses for vision, I wear some tinted safety glasses that help with fatigue and the risk of running into something and damaging what is left of my vision.

Hi Jake,

Thanks for this. I am also experiencing vision problems in my right perirheral field. I’m not completely blind but things seem quite blurry over to that side and cause difficulty when reading or writing. My field of vision has been steadily increasing since the surgery but there are certain areas where I’m still struggling. For example, I can see items if they’re moving in my lower right peripheral field but struggle to see items that are still, especially if they are transparent (ie. a glass of water on the table to my right). Not sure if this adds any additional perspective or not.

Thanks again for your comments.

Regards,

Ryan

Jake M said:

Hello Ryan. What type of vision problems have you been having? The reason I ask is that the different problems have slightly different causes and different results to expect. For example, my craniotomy left me with double-vision for a month or two afterward, as well as the loss of half of my field of view in both eyes. My eyes were also overly sensitivie to light for a while. Well, the double-vision went away and I was able to see quite clearly afterward, but unfortunately, the vision that I lost never came back. (My craniotomy was 4+ years ago.) Nevertheless, my neuro sent me in for vision tests every couple of weeks for the first few months, just to track my progress. I now techinically have 20/20 vision, but the entire right half of each eye is completely blind. it took a loooong time to get used to that, and even though I have good vision and do not need glasses for vision, I wear some tinted safety glasses that help with fatigue and the risk of running into something and damaging what is left of my vision.

Another Vancouverite. Your situation sounds similar to what happened to me minus the bleed. lost about 75% peripherally in my left eye. few days after surgery seemed to have gotten some what better but still not normal. for moths there was no change or too small of a change to notice then i noticed it improved again. optometrist says there is no more vision lose . to me it seems a bit darker on the left side though. almost a year post op i still get visual disturbances and its more of an annoyance then a worry. I was told it would come back since the avm ran into the occipital lobe it had to heal before my vision came back saying it could take months. But the worst part was disbelieving them and worrying that it would never come back.
I hope in time your sight comes back.

Hi
I am new to this site. I had a bleed iin my cereblum too about 4 months ago. My vision was affected too, I m new too having an AVM but as far as I can tell u sound like u r doing good. D.R. said you get the fastest gains in the first 3-6months they found. I would celebrate every victory no matter how small. It helps alot. But they say it can take up to 2 years of healing for younger people. have patients that is all I can say, getting better takes time so I find. I hope you get something from me. ttyl.

Hey, my sister recently had a craniotomy too and also experienced loss of vision, there was a long time after the surgery where she couldnt physically lift her eyelids open, we were told that her nerves were damaged during the surgery and they shoud recover, which they did, we then found that she had double vision and had problems with her peripheral vision. They found that if she wore an eye patch for a few hours at a time, and swapped which side she had the patch on periodically that headaches were reduced as she wasnt trying to strain her eyes and could focus better just using one at a time. She met with an optometrist who looked at the nerves behind her eyes and said that they had been slightly damaged but that they would eventually make a full recovery, she no longer has to wear the patch and her sight has greatly improved, its nearly 6 months since her surgery but i think she started to find significant improvements after about 8 weeks… Hope that was any use to you.

Hi Ryan i had a big bleed in July 09, and had a Craniotomy performed, when I did come round my family said my right eye was severly swollen after the procedure. and after coming home i noticed my field vision to the left in both eyes was affected. I still have the problem today. and as Jake said i was also sensitive to light. I have 20/20 vision, and can see but just the field vision is impaired. I have been told its nerve damage and could be caused by the blood on the brain as my avm is close the the are which controls the eyes.

Hey Dipen,

Thanks for your reply, your experience seems to be quite common from the replies I’m getting. My field of vision to the right side was completely gone after the surgery as well but it has almost completely come back. I’m left with only a small scotoma (blind spot) in my left periphery. Pretty strange, the only way to describe it is that if I’m staring at someome’s face across a table, and they hold both hands up next to their face I can’t see the the one to my right. As soon as they move it (up, left or right) it becomes visible again and very clear. I’m not sure whether or not to be hopeful that this may recover as the rest of my field of vision did, or start accepting the fact that I’ll prob have to live with it.

Anyways, only been a little over 3 weeks since the surgery so prob still a little too early to tell. I have my 1st follow up with the surgeon on the 26th so i’m hoping he might be able to shed some additional light on the situation. I’ve been trying to read up on NovaVision therapy, do you happen to have any experience with that?

Thanks again for your reply!

Ryan

Dipen said:

Hi Ryan i had a big bleed in July 09, and had a Craniotomy performed, when I did come round my family said my right eye was severly swollen after the procedure. and after coming home i noticed my field vision to the left in both eyes was affected. I still have the problem today. and as Jake said i was also sensitive to light. I have 20/20 vision, and can see but just the field vision is impaired. I have been told its nerve damage and could be caused by the blood on the brain as my avm is close the the are which controls the eyes.

Greetings to all. I know this is an old discussion, but I did want to simply inquire, I’ve had vision loss as of March 2017. I’ve had multiple cerebral bleeds, but the last one apparently has some lingering effects that were unexpected. The question though, is that though mine bled on the right side, but vision loss is also on the right. The doctors say that this doesn’t make any sense but it is what it is. Anyone else have this issue? Thanks again and stay strong tribe!