Loss of vision

I hope everyone is enjoying every bit of life that is enjoyable, right now.


For years, since my AVM was removed, I have lived without any vision in my right field of vision. I am always working to improve my reading speed, since the loss of brain tissue in my left occipital lobe. Has anyone had a similar condition? If so, what have you done to adjust?

Any comments will be greatly appreciated.

Warmest,
Matt

Hello Matthew. First welcome to the group. I’m also in NC, by the way, in Cary which is near Raleigh. My AVM was in my right occipital and parietal lobes. As a result of my bleed, I lost most of the vision in my left eye. All of the doctors I’ve talked to tell me that there is nothing that can be done to improve my vision, it’s just the nature of where my brain is damaged. My neurology center does have a neuro-opthamologist and I thought I’d make an appt. with her to see what she says. Perhaps there is something she could offer that would help.

It took me a long time before I could read again as well. I would have to cover everything except for the line I was reading or everything would be all jumbled and I wouldn’t have any idea what I was looking at. That has improved greatly but I still am not able to read for long periods of time and I certainly cannot read at the speed at which I once did.

For me though I just keep trying. Reading is one of my greatest pleasures so I’m not willing to give up on it yet. It may take me several weeks to finish a book now, and I may forget what I’ve read 10 minutes before, but I just keep on. Sometimes some things stick!

You seem to have a great attitude also so I wish you luck. And if you discover the magical cure, let me know!

Matt,

Welcome! I had a AVM in my Left Occipital Lobe as well and have dealt with vision loss in my right field of vision for the last 10 years. As the years go by I feel as if the loss is more, but I have not had that confirmed with a Visual field test out of fear they will take my license away. I think its something you never get used to and is so hard to explain to people. Mu doctor did suggest that I force myself to sit where everything is to my right, forcing me to constatly scan. I used to do that, however, I feel more comfortable with everything to my left.

I’m sorry that I don’t have any great words of wisdom, but your not alone! Although, being blond everyone just thinks I’m a clutz…so maybe dying your hair blond would help! ;O) Then you don’t have to explain when you knock over a drink when your reaching for the salt!

Good luck,
Bonnie

Ha! Bonnie I do that all the time. Knock something over when reaching for something else. Constantly bumping in to things on my left. I’m just one big bruise on my left side! I generally have to ask my husband at least once a day what I did to create a new bruise. Very funny! Seriously, I am having a T-shirt made that says “I have a brain injury, what’s your excuse?”.


Bonnie said:

Matt,


Welcome! I had a AVM in my Left Occipital Lobe as well and have dealt with vision loss in my right field of vision for the last 10 years. As the years go by I feel as if the loss is more, but I have not had that confirmed with a Visual field test out of fear they will take my license away. I think its something you never get used to and is so hard to explain to people. Mu doctor did suggest that I force myself to sit where everything is to my right, forcing me to constatly scan. I used to do that, however, I feel more comfortable with everything to my left.



I’m sorry that I don’t have any great words of wisdom, but your not alone! Although, being blond everyone just thinks I’m a clutz…so maybe dying your hair blond would help! ;O) Then you don’t have to explain when you knock over a drink when your reaching for the salt!



Good luck,

Bonnie

Thanks Trish!



Trish said:
Hello Matthew. First welcome to the group. I'm also in NC, by the way, in Cary which is near Raleigh. My AVM was in my right occipital and parietal lobes. As a result of my bleed, I lost most of the vision in my left eye. All of the doctors I've talked to tell me that there is nothing that can be done to improve my vision, it's just the nature of where my brain is damaged. My neurology center does have a neuro-opthamologist and I thought I'd make an appt. with her to see what she says. Perhaps there is something she could offer that would help.

It took me a long time before I could read again as well. I would have to cover everything except for the line I was reading or everything would be all jumbled and I wouldn't have any idea what I was looking at. That has improved greatly but I still am not able to read for long periods of time and I certainly cannot read at the speed at which I once did.

For me though I just keep trying. Reading is one of my greatest pleasures so I'm not willing to give up on it yet. It may take me several weeks to finish a book now, and I may forget what I've read 10 minutes before, but I just keep on. Sometimes some things stick!

You seem to have a great attitude also so I wish you luck. And if you discover the magical cure, let me know!

Wow! I’m not the only one knocks over drinks!!! Yeah, the driving thing is a concern. I do well with it, but my wife does the driving when we are together. Thanks for the empathy.

Warmest,
Matt



Bonnie said:
Matt,

Welcome! I had a AVM in my Left Occipital Lobe as well and have dealt with vision loss in my right field of vision for the last 10 years. As the years go by I feel as if the loss is more, but I have not had that confirmed with a Visual field test out of fear they will take my license away. I think its something you never get used to and is so hard to explain to people. Mu doctor did suggest that I force myself to sit where everything is to my right, forcing me to constatly scan. I used to do that, however, I feel more comfortable with everything to my left.

I'm sorry that I don't have any great words of wisdom, but your not alone! Although, being blond everyone just thinks I'm a clutz.....so maybe dying your hair blond would help! ;O) Then you don't have to explain when you knock over a drink when your reaching for the salt!

Good luck,
Bonnie

one month before the bleed i was awakened by a sharp pain in my eye in the middle of the night. when i woke up the next am i realized that my vision was blurred in that eye. went to the eye dr and he said my optic nerve was under pressure but said he had no answer for that. well a month later i had the bleed. well now i am having the same symptoms all over again. this time not so bad. i was again awakened yesterday am with slignt pain in left eye and blurred vision. my vision is better today but now i am worried. am i going to have another bleed? any thoughts would be greatly appreciated. sincerely. grace

Hi Matt,

I had a craniotomy on July 28, 2005 to remove an AVM from my left temporal lobe and I ended up losing the right field of view in both eyes. I agree… Reading did become far more difficult and it slowed me way down. I also knocked over drinks, bumped into walls, would be looking for something that was sitting right in front of me and not be able to see it. Quite frustrating. While my vision has not improved, I have certainly gotten more used to it, which has made things a bit easier. I have tried a couple of things that I have found quite interesting and you may want to give them a try.

In the case of reading, since English is read from left to right, and we are missing our right field of view, it is easy to lose our place on the page, make assumptions as to what a word will be when we see the first couple of letters, only to find out it was a different word, and generally speaking, it slows us way down because we can’t use our peripheral vision to anticipate what is following the word we are reading. If reading a book, try turning the book 90 degrees counterclockwise so that the lines are running from bottom to top, rather than left to right. It may tale some getting used to, but at least it is easier to see the whole word at the same time, rather than just see a fraction of the word. Also, since the line does not “disappear,” it is easier to follow the whole line without jumping forward or backward. I don’t know about you, but when reading from left to right, I often find myself jumping forward or backward because it is hard to line up the end of one line with the beginning of the next line.

Jake,

Thanks for the advice!nnI a going to mess with your suggestion of turning the book on its side! i am always open to new techniques and ideas!

Warmest,
Matt



Jake M said:
Hi Matt,

I had a craniotomy on July 28, 2005 to remove an AVM from my left temporal lobe and I ended up losing the right field of view in both eyes. I agree... Reading did become far more difficult and it slowed me way down. I also knocked over drinks, bumped into walls, would be looking for something that was sitting right in front of me and not be able to see it. Quite frustrating. While my vision has not improved, I have certainly gotten more used to it, which has made things a bit easier. I have tried a couple of things that I have found quite interesting and you may want to give them a try.

In the case of reading, since English is read from left to right, and we are missing our right field of view, it is easy to lose our place on the page, make assumptions as to what a word will be when we see the first couple of letters, only to find out it was a different word, and generally speaking, it slows us way down because we can't use our peripheral vision to anticipate what is following the word we are reading. If reading a book, try turning the book 90 degrees counterclockwise so that the lines are running from bottom to top, rather than left to right. It may tale some getting used to, but at least it is easier to see the whole word at the same time, rather than just see a fraction of the word. Also, since the line does not "disappear," it is easier to follow the whole line without jumping forward or backward. I don't know about you, but when reading from left to right, I often find myself jumping forward or backward because it is hard to line up the end of one line with the beginning of the next line.

Grace,

i will keep you in my thoughts and prayers. I know what the uncertainty feels like, and it is no fun at all! When I was going through all of that i had to focus on particularly good things in my life. When that didn’t seem to work I watched movies and ate Ben and Jerry’s. At the moment I like Americone Dream!

Warmest,
Matt



grace said:
one month before the bleed i was awakened by a sharp pain in my eye in the middle of the night. when i woke up the next am i realized that my vision was blurred in that eye. went to the eye dr and he said my optic nerve was under pressure but said he had no answer for that. well a month later i had the bleed. well now i am having the same symptoms all over again. this time not so bad. i was again awakened yesterday am with slignt pain in left eye and blurred vision. my vision is better today but now i am worried. am i going to have another bleed? any thoughts would be greatly appreciated. sincerely. grace

I too have a vision issue since my AVM removal approx. 14 months ago. Since vision is our dominant sensory, it REALLY messes with our recovery. I still have some double vision that keeps ‘moving around’ on me so I can’t get a ‘compensation’ down to pat. (Grrrrrrrrrrrrrr!!!) I’ve tried eye exercises, medical taped non-perscription glasses, the ‘pirate’ patch for eye patching. Does anyone have any suggestions or tips on making this go away or at the very least ‘manageable’? This is driving me NUTS!

Hi Matt. I’m new to this site-came on board because of a recent seizure that gave me a scare. I have 50% loss of vision on my left because my AVM was in my right occipital lobe. It was removed in 1996-around the time of yours. It sounds like they’ve come a long way with treatments since then. Reading is VERY frustrating. I don’t really have any words of wisdom for you, but I can relate. It takes a long time to read just a small amount. I hate it when someone asks me to read something out loud because I sound like I’m just learning how to read. I just keep on trying and am thankful that I’m still alive! You seem to have a great attitude. Let me know if you learn anything new!

Cindy, my neurologist is sending me “balance therapy” which is supposed to help with the dizziness and off balance issues I have. Firs they’re going to do this 1 1/2 test called a VNG (don’t remember what it stands for but…) which is determine if the issues stems from my inner ear and the connections it has in the brain. All of this affects our vision as well, who knew?? Anyway, once they establish if it is in fact my brain/inner ear problem, they can give me exercises that will help with the dizziness and the visual processing issues I have. It isn’t going to make the vision come back, but it’s supposed to be a way to cope with some of the problems associated with occipital lobe injuries. I’ll have to remember to let you now what I find out after all of this is done, sometime by the middle of November.



Cindy Phillips said:
I too have a vision issue since my AVM removal approx. 14 months ago. Since vision is our dominant sensory, it REALLY messes with our recovery. I still have some double vision that keeps 'moving around' on me so I can't get a 'compensation' down to pat. (Grrrrrrrrrrrrrr!!!) I've tried eye exercises, medical taped non-perscription glasses, the 'pirate' patch for eye patching. Does anyone have any suggestions or tips on making this go away or at the very least 'manageable'? This is driving me NUTS!

I found your reply quite interesting. I lost vision on my left side and have trouble reading and also knock stuff over and bump into things. I’ll have to try your reading trick. Thanks, Anne



Jake M said:

Hi Matt,

I had a craniotomy on July 28, 2005 to remove an AVM from my left temporal lobe and I ended up losing the right field of view in both eyes. I agree… Reading did become far more difficult and it slowed me way down. I also knocked over drinks, bumped into walls, would be looking for something that was sitting right in front of me and not be able to see it. Quite frustrating. While my vision has not improved, I have certainly gotten more used to it, which has made things a bit easier. I have tried a couple of things that I have found quite interesting and you may want to give them a try.

In the case of reading, since English is read from left to right, and we are missing our right field of view, it is easy to lose our place on the page, make assumptions as to what a word will be when we see the first couple of letters, only to find out it was a different word, and generally speaking, it slows us way down because we can’t use our peripheral vision to anticipate what is following the word we are reading. If reading a book, try turning the book 90 degrees counterclockwise so that the lines are running from bottom to top, rather than left to right. It may tale some getting used to, but at least it is easier to see the whole word at the same time, rather than just see a fraction of the word. Also, since the line does not “disappear,” it is easier to follow the whole line without jumping forward or backward. I don’t know about you, but when reading from left to right, I often find myself jumping forward or backward because it is hard to line up the end of one line with the beginning of the next line.


Thank you, Trish! Please do update me when you find out. Good luck!!! Trish said:
Cindy, my neurologist is sending me "balance therapy" which is supposed to help with the dizziness and off balance issues I have. Firs they're going to do this 1 1/2 test called a VNG (don't remember what it stands for but...) which is determine if the issues stems from my inner ear and the connections it has in the brain. All of this affects our vision as well, who knew?? Anyway, once they establish if it is in fact my brain/inner ear problem, they can give me exercises that will help with the dizziness and the visual processing issues I have. It isn't going to make the vision come back, but it's supposed to be a way to cope with some of the problems associated with occipital lobe injuries. I'll have to remember to let you now what I find out after all of this is done, sometime by the middle of November.



Cindy Phillips said:
I too have a vision issue since my AVM removal approx. 14 months ago. Since vision is our dominant sensory, it REALLY messes with our recovery. I still have some double vision that keeps 'moving around' on me so I can't get a 'compensation' down to pat. (Grrrrrrrrrrrrrr!!!) I've tried eye exercises, medical taped non-perscription glasses, the 'pirate' patch for eye patching. Does anyone have any suggestions or tips on making this go away or at the very least 'manageable'? This is driving me NUTS!


Did you get your appointment/test results yet, Trish? (The connection thing = yes, they are connected. I saw my ENT doctor TWICE in Dec. 2009 to rule out inner ear infection and also did a hearing test… all to check out our ‘middle’/inner ear because it can effect our balance, dizziness/vertigo, etc. My results were great for both (no infection and my hearing was good and I ‘passed’). I believe it is our vision issue that is causing our dizziness and balance problems. I have an appt. with a neuro-opthalmologist in mid Jan. 2011, which seems like an eternity when waiting, and I hope with every breath in me that we can get some definitive answers & ‘productive’ resolution(s) to my vision issue. I will post those results & ‘resolutions’, in efforts to help others who are in our ‘boat’/‘shoes’ and has to wait forever too (like us) before something can even be attempted that would help us with our issue.)


Trish said:

Cindy, my neurologist is sending me “balance therapy” which is supposed to help with the dizziness and off balance issues I have. Firs they’re going to do this 1 1/2 test called a VNG (don’t remember what it stands for but…) which is determine if the issues stems from my inner ear and the connections it has in the brain. All of this affects our vision as well, who knew?? Anyway, once they establish if it is in fact my brain/inner ear problem, they can give me exercises that will help with the dizziness and the visual processing issues I have. It isn’t going to make the vision come back, but it’s supposed to be a way to cope with some of the problems associated with occipital lobe injuries. I’ll have to remember to let you now what I find out after all of this is done, sometime by the middle of November.



Cindy Phillips said:
I too have a vision issue since my AVM removal approx. 14 months ago. Since vision is our dominant sensory, it REALLY messes with our recovery. I still have some double vision that keeps ‘moving around’ on me so I can’t get a ‘compensation’ down to pat. (Grrrrrrrrrrrrrr!!!) I’ve tried eye exercises, medical taped non-perscription glasses, the ‘pirate’ patch for eye patching. Does anyone have any suggestions or tips on making this go away or at the very least ‘manageable’? This is driving me NUTS!