More blind than I thought

After almost 3 years since my AVM bleed, I finally went to see a neuro ophthalmologist to see if something could be done to improve my vision. I lost what I thought was just most of the vision in my left eye as a result of the bleed.

After all the standard vision tests and a field vision test it was determined that not only is the vision impaired in my left eye, but I also lost the vision on the left side of my right eye.

How did I not notice this? Good question. I think because it's very obvious that I can't see well out of my left eye, I can see nothing in my peripheral vision and it on the outside. But with having a vision loss on the left side of my right eye, all I can't see is my nose, and that's not even very pretty, so no big loss, I guess.

I also found out that there is nothing that can be done to improve my vision, in the doctor's opinion anyway. I really wasn't expecting a different answer but now that I know it just seems so final. This is just the way I'm going to be for the rest of my life, warts and all.

So, while I am continuously grateful to be alive, it just sometimes kinda sucks living with all of the impairments, knowing that it's never going to get any better.

Thanks for listening everyone!

Thank you so much for your support! I really wish there was something i could do to help you. I am not as scared as i originally was considering i had no one to talk to… But every one on this site has given me new found hope. I am grateful to say, I’m happy to have you as a friend on here and i am happy to have someone like you to talk to! Thank you so much!

Trish, I think we can at least ‘help’ our vision issues. I have no concrete evidence that what I’ve done (vision exercises & eye nutrition) has or hasn’t aided in my 0.50 vision improvement but what I do know is that I couldn’t just nonchalantly sit back and not TRY to do something… anything… that MIGHT be beneficial. (I’m not saying you are doing that… I’m merely saying, don’t give up on doing things that could potentially benefit your vision improving.)

Trish, I am so sorry about you vision! Yes, sometimes life just really sucks. You are such a strong lady and you have helped me in many ways, I wish I could help you. My thoughts and prayers are with you.xx

Cindy, I’d be curious to know what types of eye exercises and nutrition you’ve been doing. I’ve been asking my neurologist if there was anything I could do and he couldn’t offer anything. I’d love to hear what you’ve been doing. I would be willing to try anything.



Cindy Phillips said:

Trish, I think we can at least 'help' our vision issues. I have no concrete evidence that what I've done (vision exercises & eye nutrition) has or hasn't aided in my 0.50 vision improvement but what I do know is that I couldn't just nonchalantly sit back and not TRY to do something... anything... that MIGHT be beneficial. (I'm not saying you are doing that... I'm merely saying, don't give up on doing things that could potentially benefit your vision improving.)

This has the information on the things I did (for eyes). Note: As far as tomatoes, try to have them cooked (this can be in the form of sauces (such as tomatoe sauce added to a dish, spaghetti/pizza sauce, etc.), tomatoe-based soups & chili, or from a bottle of ketchup (add ketchup to meatloaf, fries, etc.)) because the 'cooking' aspect 'releases' more of the beneficial components of the tomatoes than just eating the tomato itself. http://www.avmsurvivors.org/profiles/blogs/precautions-what-to-do-and

Imagine HUGE, UP-CLOSE letters of the following letters & follow the letters with your eyes (without turning your head): Z, X, M, W, N, O, S, and t (a lowercase "t"). (I also followed these letters 'in reverse'... going from right to left after I completed them from left to right. Note: when doing the reverse of the letters, you will need to flip the "Z" & "S" so they are backwards.) Roll your eyes (we've been told not to as it is rude to 'roll your eyes' at people) but it is good for our eyes as it helps the eye muscles (stretch & relax, ec.). Google "eye exercises" on the internet and it will give you some exercises. (There are links/info. in my blog here about eye exercises too: http://www.avmsurvivors.org/profiles/blogs/precautions-what-to-do-and .)

Also, Gisele Collin may be able to inform you of other things that could help (her issue is the right side, opposite of you, but the things that's helped her should work for you too). http://www.avmsurvivors.org/profiles/blogs/ptvd-have-you-experienced-it

Start with these and I'll send you more info. as I get it. (Darn professionals don't tell us what we can do to help our situations; rather, they merely say 'just wait' for the time priod to lapse . I say, "Um, no thanks." to idle waiting.) I go to a double vision specialist on 2/24/11, I'll see if she has any input to add on what can help us 'visually impaired' and wil post it for everyone. (I hope EVERYONE posts EVERY tidbit of info. they possible know/receive so we can all help each other because it's 'no fun' being in a position where we have no clue nor are instructed of what would help.)

Hope this helps!!!



Trish said:

Cindy, I'd be curious to know what types of eye exercises and nutrition you've been doing. I've been asking my neurologist if there was anything I could do and he couldn't offer anything. I'd love to hear what you've been doing. I would be willing to try anything.

Cindy Phillips said:
Trish, I think we can at least 'help' our vision issues. I have no concrete evidence that what I've done (vision exercises & eye nutrition) has or hasn't aided in my 0.50 vision improvement but what I do know is that I couldn't just nonchalantly sit back and not TRY to do something... anything... that MIGHT be beneficial. (I'm not saying you are doing that... I'm merely saying, don't give up on doing things that could potentially benefit your vision improving.)

Cindy thanks for much for this info. I’ve got a lot of reading to do now. I sincerely appreciate you taking the time to gather this info. for me.!!



Cindy Phillips said:

This has the information on the things I did (for eyes). Note: As far as tomatoes, try to have them cooked (this can be in the form of sauces (such as tomatoe sauce added to a dish, spaghetti/pizza sauce, etc.), tomatoe-based soups & chili, or from a bottle of ketchup (add ketchup to meatloaf, fries, etc.)) because the 'cooking' aspect 'releases' more of the beneficial components of the tomatoes than just eating the tomato itself. http://www.avmsurvivors.org/profiles/blogs/precautions-what-to-do-and

Imagine HUGE, UP-CLOSE letters of the following letters & follow the letters with your eyes (without turning your head): Z, X, M, W, N, O, S, and t (a lowercase "t"). (I also followed these letters 'in reverse'... going from right to left after I completed them from left to right. Note: when doing the reverse of the letters, you will need to flip the "Z" & "S" so they are backwards.) Roll your eyes (we've been told not to as it is rude to 'roll your eyes' at people) but it is good for our eyes as it helps the eye muscles (stretch & relax, ec.). Google "eye exercises" on the internet and it will give you some exercises. (There are links/info. in my blog here about eye exercises too: http://www.avmsurvivors.org/profiles/blogs/precautions-what-to-do-and .)

Also, Gisele Collin may be able to inform you of other things that could help (her issue is the right side, opposite of you, but the things that's helped her should work for you too). http://www.avmsurvivors.org/profiles/blogs/ptvd-have-you-experience...

Start with these and I'll send you more info. as I get it. (Darn professionals don't tell us what we can do to help our situations; rather, they merely say 'just wait' for the time priod to lapse . I say, "Um, no thanks." to idle waiting.) I go to a double vision specialist on 2/24/11, I'll see if she has any input to add on what can help us 'visually impaired' and wil post it for everyone. (I hope EVERYONE posts EVERY tidbit of info. they possible know/receive so we can all help each other because it's 'no fun' being in a position where we have no clue nor are instructed of what would help.)

Hope this helps!!!



Trish said:

Cindy, I'd be curious to know what types of eye exercises and nutrition you've been doing. I've been asking my neurologist if there was anything I could do and he couldn't offer anything. I'd love to hear what you've been doing. I would be willing to try anything.

Cindy Phillips said:
Trish, I think we can at least 'help' our vision issues. I have no concrete evidence that what I've done (vision exercises & eye nutrition) has or hasn't aided in my 0.50 vision improvement but what I do know is that I couldn't just nonchalantly sit back and not TRY to do something... anything... that MIGHT be beneficial. (I'm not saying you are doing that... I'm merely saying, don't give up on doing things that could potentially benefit your vision improving.)

You are VERY welcome! (I know it sucks majorly to have to look for & read things that could potentially help with our vision impairment… it makes the task SOOOOOOOOO much harder.) Good luck & hang in there… fight like heck to reclaim your vision!

Trish said:

Cindy thanks for much for this info. I've got a lot of reading to do now. I sincerely appreciate you taking the time to gather this info. for me.!!

Cindy Phillips said:

This has the information on the things I did (for eyes). Note: As far as tomatoes, try to have them cooked (this can be in the form of sauces (such as tomatoe sauce added to a dish, spaghetti/pizza sauce, etc.), tomatoe-based soups & chili, or from a bottle of ketchup (add ketchup to meatloaf, fries, etc.)) because the 'cooking' aspect 'releases' more of the beneficial components of the tomatoes than just eating the tomato itself. http://www.avmsurvivors.org/profiles/blogs/precautions-what-to-do-and

Imagine HUGE, UP-CLOSE letters of the following letters & follow the letters with your eyes (without turning your head): Z, X, M, W, N, O, S, and t (a lowercase "t"). (I also followed these letters 'in reverse'... going from right to left after I completed them from left to right. Note: when doing the reverse of the letters, you will need to flip the "Z" & "S" so they are backwards.) Roll your eyes (we've been told not to as it is rude to 'roll your eyes' at people) but it is good for our eyes as it helps the eye muscles (stretch & relax, ec.). Google "eye exercises" on the internet and it will give you some exercises. (There are links/info. in my blog here about eye exercises too: http://www.avmsurvivors.org/profiles/blogs/precautions-what-to-do-and .)

Also, Gisele Collin may be able to inform you of other things that could help (her issue is the right side, opposite of you, but the things that's helped her should work for you too). http://www.avmsurvivors.org/profiles/blogs/ptvd-have-you-experience...

Start with these and I'll send you more info. as I get it. (Darn professionals don't tell us what we can do to help our situations; rather, they merely say 'just wait' for the time priod to lapse . I say, "Um, no thanks." to idle waiting.) I go to a double vision specialist on 2/24/11, I'll see if she has any input to add on what can help us 'visually impaired' and wil post it for everyone. (I hope EVERYONE posts EVERY tidbit of info. they possible know/receive so we can all help each other because it's 'no fun' being in a position where we have no clue nor are instructed of what would help.)

Hope this helps!!!



Trish said:

Cindy, I'd be curious to know what types of eye exercises and nutrition you've been doing. I've been asking my neurologist if there was anything I could do and he couldn't offer anything. I'd love to hear what you've been doing. I would be willing to try anything.

Cindy Phillips said:
Trish, I think we can at least 'help' our vision issues. I have no concrete evidence that what I've done (vision exercises & eye nutrition) has or hasn't aided in my 0.50 vision improvement but what I do know is that I couldn't just nonchalantly sit back and not TRY to do something... anything... that MIGHT be beneficial. (I'm not saying you are doing that... I'm merely saying, don't give up on doing things that could potentially benefit your vision improving.)

HI TRISH, I AM NOT ALONE I HAVE THE SAME THING WITH MY LEFT EYE AND I WENT TO ONE TWO AND HE TOLD ME THE SAY THING NOTHIN I CAN DO ABOUT THAT SO NOW I ASK YOU DO YOU DRIVE? RIGHT NOW I DONT A LITTLE SCARED TO CAUSE WE USE THAT LEFT SIDE SO MUCH MY RIGHT EYE IS OK, STILL GOT THE PAIN IN MY LEGS BUT LIKE YOU SAY IT’S JUST SO GOOD TO BE ALIVE WITH THE IMPAIRMENTS THAT WILL NEVER GET ANY BETTER NOW THEY TALKIN ABOUT DOIN MORE SURGERY TO TRY AND HELP THE PAIN IN MY THIGHS BUT THEY TAKIN ABOUT IN MY BACK. HAD THAT DONE ALREADY NOT READY TO LET THEM TOUCH ME AGAIN NOT NOW JUST ENJOYIN MY HEALIN FROM THE SURGERY. DID THEY TELL YOU NOT TO DRIVE ANYMORE ? GOD BLESS

Sheree - I don’t drive, there’s no way I could. It’s not just lack of vision with me. I also can’t judge distances, have no depth perception and things just don’t always look quite right to me. Sometimes I have to concentrate on something for a while before I am sure what it is I’m seeing. I don’t really know how to explain that so I hope it makes sense.



sheree d ellison said:

HI TRISH, I AM NOT ALONE I HAVE THE SAME THING WITH MY LEFT EYE AND I WENT TO ONE TWO AND HE TOLD ME THE SAY THING NOTHIN I CAN DO ABOUT THAT SO NOW I ASK YOU DO YOU DRIVE? RIGHT NOW I DONT A LITTLE SCARED TO CAUSE WE USE THAT LEFT SIDE SO MUCH MY RIGHT EYE IS OK, STILL GOT THE PAIN IN MY LEGS BUT LIKE YOU SAY IT'S JUST SO GOOD TO BE ALIVE WITH THE IMPAIRMENTS THAT WILL NEVER GET ANY BETTER NOW THEY TALKIN ABOUT DOIN MORE SURGERY TO TRY AND HELP THE PAIN IN MY THIGHS BUT THEY TAKIN ABOUT IN MY BACK. HAD THAT DONE ALREADY NOT READY TO LET THEM TOUCH ME AGAIN NOT NOW JUST ENJOYIN MY HEALIN FROM THE SURGERY. DID THEY TELL YOU NOT TO DRIVE ANYMORE ? GOD BLESS



Lesley Skelton said:

Trish, I am so sorry about you vision! Yes, sometimes life just really sucks. You are such a strong lady and you have helped me in many ways, I wish I could help you. My thoughts and prayers are with you.xx

HI TRISH, YES I UNDERSTAND WHAT YOU ARE SAYIN MAYBE I HAVE THE SAME THING GOIN ON A LITTLE SCARED TO EVEN TRY AND DRIVE CAUSE I KNOW I DONT HAVE MY LEFT SIDE ANYMORE.I DO, TRY AND WORK MY EYES WITHOUT MOVIN MY HEAD BUT MY DOC TOLD ME WHEN HE SAY’S I CAN DRIVE AGAIN I WILL HAVE TO LEARN HOW TO TURN MY HEAD TO THE LEFT OK, BUT THAT’S THE MOST IMPORTANT SIDE WHEN YOU DRIVIN, OH YEAH WENT TO THE SSDI DOC ABOUT MY EYES AND THEY SAID OH YOU NOT BLIND WELL I KNOW THAT BUT WHERE I WORK I NEED TO SEE EVERYTHING FRONT, AND BOTH SIDES SO OH WELL STILL OFF WORK FOR NOW GOD BLESS


Trish, my depth-perception is off too and that makes doing things very 'difficult'. What do you do to 'compensate' or make it 'managable' so you can do the everyday, 'ADL' things? (This is driving me nuts... so aggrivating.) Any tips or suggestions would be GREATLY appreciated!


Trish said:

Sheree - I don't drive, there's no way I could. It's not just lack of vision with me. I also can't judge distances, have no depth perception and things just don't always look quite right to me. Sometimes I have to concentrate on something for a while before I am sure what it is I'm seeing. I don't really know how to explain that so I hope it makes sense.

sheree d ellison said:
HI TRISH, I AM NOT ALONE I HAVE THE SAME THING WITH MY LEFT EYE AND I WENT TO ONE TWO AND HE TOLD ME THE SAY THING NOTHIN I CAN DO ABOUT THAT SO NOW I ASK YOU DO YOU DRIVE? RIGHT NOW I DONT A LITTLE SCARED TO CAUSE WE USE THAT LEFT SIDE SO MUCH MY RIGHT EYE IS OK, STILL GOT THE PAIN IN MY LEGS BUT LIKE YOU SAY IT'S JUST SO GOOD TO BE ALIVE WITH THE IMPAIRMENTS THAT WILL NEVER GET ANY BETTER NOW THEY TALKIN ABOUT DOIN MORE SURGERY TO TRY AND HELP THE PAIN IN MY THIGHS BUT THEY TAKIN ABOUT IN MY BACK. HAD THAT DONE ALREADY NOT READY TO LET THEM TOUCH ME AGAIN NOT NOW JUST ENJOYIN MY HEALIN FROM THE SURGERY. DID THEY TELL YOU NOT TO DRIVE ANYMORE ? GOD BLESS

Sheree, do eye exercises and good nutrition for the eyes & see if that will help you. It may or may not but here’s how I see it: we never know whether or not until we try… if we try and it doesn’t help, nothing lost (we’d had spent the time on recovering anyway)… if we try and it helps (no matter what degree it is), then that’s a ‘plus’/positive/gain. I am not one that can idly sit back & wait and nor one who will allow myself to get my hopes up & then be disappointed & devastated but I can’t just accept ‘vagueness’ and the unknown/unproven or slim chances as being the definitive, concrete ‘answer’. Continue praying about it AND fight to reclaim everything (no matter how slim or unknown the chances are)! God did NOT give up on us (as He allowed us to live through this ‘event’/‘ordeal’) and we can not give up on Him (on bringing us through this). He has & is doing His ‘part’ and we have to do everything in our power to ‘assist’.

sheree d ellison said:

HI TRISH, I AM NOT ALONE I HAVE THE SAME THING WITH MY LEFT EYE AND I WENT TO ONE TWO AND HE TOLD ME THE SAY THING NOTHIN I CAN DO ABOUT THAT SO NOW I ASK YOU DO YOU DRIVE? RIGHT NOW I DONT A LITTLE SCARED TO CAUSE WE USE THAT LEFT SIDE SO MUCH MY RIGHT EYE IS OK, STILL GOT THE PAIN IN MY LEGS BUT LIKE YOU SAY IT'S JUST SO GOOD TO BE ALIVE WITH THE IMPAIRMENTS THAT WILL NEVER GET ANY BETTER NOW THEY TALKIN ABOUT DOIN MORE SURGERY TO TRY AND HELP THE PAIN IN MY THIGHS BUT THEY TAKIN ABOUT IN MY BACK. HAD THAT DONE ALREADY NOT READY TO LET THEM TOUCH ME AGAIN NOT NOW JUST ENJOYIN MY HEALIN FROM THE SURGERY. DID THEY TELL YOU NOT TO DRIVE ANYMORE ? GOD BLESS

Cindy, I don’t know that there are any “tricks” to help with the lack of depth perception. I think it’s just something that I’ve gotten used to. Like it’s almost become second nature to work with it. For example when I’m pouring a drink I used to totally miss the glass and spill all over the place. Now I have to hold the rim of the glass and make sure that the pitcher (or bottle or whatever) is touching the rim before I pour it. If I go to reach for something I just have to concentrate and keep looking at it until I can touch it. I think one of the most challenging things for me is cutting or slicing in the kitchen. Not doing this is really not an option for me so I just have to be very careful. I haven’t cut my fingers off yet so I guess it’s working! Sorry I don’t have much to offer you!

Hi Trish,
Sorry to hear that you are having even further issues with your eyes. I have just been diagnosed with AVM and it all appears to be concentrating around my left eye, well in the corner, when I bend over get pain and a blood vessel appearing from behind my tear duct, most unpleasant.
Stay strong and I hope that you have a really good support team around you lifting your spirits!!
This is a truly wonderful way to exchange information.
Take care.

I was diagnosed as legally blind in my right eye when I was 9. My field of vision is tested every year and I continue to drive. My understanding is that the eye can be retrained to see if the brain has already learned to see. The synapse or connection has been made. My doctor believes that I have never seen out of my right eye so therefore my brain has no memory to draw from.
My burden is my left eye has to work extra hard and gets tired resulting in visual migraines . Neuro docs don’t believe my vision is connected to my newly discoveredAVM but it seems like an unlikely coincidence to me. ( but they don’t believe the headaches that took me to the hospital are related either :wink: