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AVM Survivors Network

Eyes - Scaring Me

“I’m Seeing Things out of the Corner of my Eye. It is scaring me…….”

Part of me wants to play the role of the smarty pants teenager, but my teenage son drives me ‘nuts” when he does that. So I won’t.

Because, let’s be honest, this is a scary question……

And especially for anyone who has had their AVM anywhere close to their brain or their eye, this is a big deal.

So here’s what I know and what I don’t. (I could write a book series on that - the don’t would be way longer).

There are 13 main nerves that talk to the different parts of the brain and then tell the parts of the body to do what the brain wants. At last count, when i looked at the issues I have and a “brain map of cranial nerves” (Google it sometime), I think that I am realistically looking at partial damage in 8 out of 13. Not total but partial.

Okay, we don’t want to stay there, so moving on. Obviously, with that kind of damage, eyes are a big concern. My neuro surgeon, even while i was still in the hospital (at least that is when i think it was) told me to get my eyes checked. I assumed he meant by a specialist, but he didn’t. He just meant my normal every day type of eye doctor. I did, he was ‘amazed’ at what had happened and was very professionally excited to see what he could see. He ran the normal tests and then wanted to do a couple of additional ones. He ended the exam by asking me if it would be okay if he talked to my neuro surgeon. (Why would someone say no to that?) So Dr. M. talked to Dr. S and then told me we should keep an eye on things but everything is “about as good as can be expected.” Should I watch for anything? Nope. Just be consistent with appts and so forth.

First year post op, no real changes. I couldn’t read but that had more to do with brain fog than it did with seeing the words. Nearing the 1 year mark, I started having more times where I thought I saw something out of the corner of my eye. Was it a car going down the street? A squirrel? I don’t know. But in addition to that, I started having my eyesight go fuzzy. It was like sometimes i couldn’t read the screen on my computer (maybe i should blame that for my typos?) Sometimes i could see near, sometimes far, sometimes in between, sometimes it was all fuzzy. What made it happen? The main thing is doing the main thing for too long. If I tried to write on my computer for too long, they got blurry. If i went and stepped away from the computer, and sometimes even stepped away from those glasses (I have I think 4 old prescriptions plus my current ones.) There are times when switching to a different script would be enough to get them back. Sometimes it takes using a different device - 10 inch ipad compared to a 17 inch laptop.

Have we been able to figure out what’s causing it? No, but we verified that it wasn’t an emergency situation, it wasn’t something that would cause me to go blind so then it’s a matter of learning to adjust, learning to be flexible, breaking up my writing time, and other things like that.

So what in the world does that have to do with seeing black spots in the corners of your eyes? Let me outline the method i would go through to make sure it’s just an SOB that bothers you and not a life altering situation:

  • Call your family eye doctor and schedule an appt to get in for a check up. If they ask if you have any concerns, explain what you’re concerned about.
  • Personally, i write a letter to any doc i’m going to have an appointment with and usually e-mail it to them. It gives me a chance to put all of my thoughts and symptoms and issues down on paper, well thought out and organized. It also helps the doctor (at least most of mine have told me that it helps them use our time wisely.
  • If your eye doctor can’t figure out what it is, ask him to refer you to a specialist. I went from the family eye doctor to a neurological optometrist and from her to a neurological ophthalmologist.

What was the end result? Depressingly, there were very few answers. None of them could pinpoint anything that was wrong, at least not wrong enough to cause the problems that I have. So what does that mean?

  • It means that the eye problem that I have is a nuisance but it does not appear to be something that is going to lead to bigger problems. So it’s not something I need to get scared about.
  • Since there isn’t a solid reason, that essentially means that it’s something I need to learn to live with. I’m not going to go into the details of what I’m tinkering with to try to deal with mine because everyone is different. If you want to talk individually, message me.

So, did we solve the eye problems? No, we didn’t. It took a long time to get to this point, but I know it’s a nuisance and something to deal with, not something to be scared of.

And I hope that my rambling made sense - thoughts, comments, please let me know……

TJV

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Hey @TJ127. I’ve been “dealing with” vision issues for about 2 years now. First I lost peripheral vision on right, then left. Now right eye blind and I see out of sliver on my left. Verified with optometrist, ophthalmologist, and neuroopthamologist it is not my eyes that are the problem but the brain they’re connected to. Been through a host of visual tests. But got a new one coming up called an ERG. Supposedly it detects whether my eyes have any “data” coming into them and then if that “data” is being processed correctly. All that to say, my vision is correctable with glasses for the portion I can see. My issues is the visual field is so narrow. It sounds to me like docs have a problem determining whether it’s an issue with the eye, the brain, or something else. Hope you get some answers! Blessings as you continue!

Link to ERG test: https://youtu.be/ZM0eY6exep8

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TJ,

Hi! Long time no write!

The only similar thing I can share is that I had scotomas for a short while after my embolisation and the subsequent angiogram. In my case they were like a jagged C shape that started lower right of central vision, grew to cover much of my central vision and after 20-30 minutes faded away. Now, this is typical of a scotoma. My scotomas were like a blurriness, so all the colours were present but if I was reading, there’s no way I’d be able to read through the blur.

Some scotomas can be dark patches, I believe, rather than the blur, and some can be “scintillating” (= bright and shiny).

Now, I’m not saying maybe you’ve got scotomas going on but maybe something in the peripheral damage that you’ve had from your AVM or embolisations is driving interference in your vision somewhat like happens with a scotoma.

I’m not sure what it means. I’m not sure it will help (though I’d like it to) but I’m guessing that irritation of some parts of the brain drive these sorts of events. In this regard, scotomas count as common and lots of people have these kinds of events, usually associated with migraine aura. And I guess they just carry on.

Sending you my best wishes as usual,

Richard

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I’m afraid I don’t have any answers/suggestions to offer, though I can offer that I often see objects out the corner of my vision too, just like you have mentioned.

It occurred to me the other day whilst looking out my window that it seemed one of my eyes was slightly bouncing as I kept thinking something was above my curtain, so I covered one eye up it and it was more clear to me this was the case. Now in my understanding of this situation I’m led to believe I was dragging an object from the bouncing vision into my actual vision (if that makes sense). It was only a theory I came up for myself as you may not incur a bounce within in the eye. I had quite extreme bouncing eyes in my early days which I’m pleased to say have calmed down a great deal, though it has taken some time for it to happen. There almost there.

Not much help though just comforting knowing you not alone.

Jo