Just joined the group! In Feb of 2008 I had my 6.5 x 7.5 x 3 cm AVM located in the left occipital parietal lobe completely removed (yipee!). Unfortunately in this I was left with an acquired brain injury and became legally blind with right homonymous hemianopsia.
I am curious to know if anyone else has this and what challenges (and strengths) this poses on others lives. Before I started reading on groups, I never knew some peoples vision loss was only temporary!! I'm sadly enough, not one of those lucky ones.
I just went through the process of receiving a guide dog, and now am in possession of a lovely 2 year old, female black lab named Frances (which is really cool because that just so happens to be my middle name which no one knew!).
My main struggle with the vision loss is reading, the lack of a drivers license and bumping into things.
Anyways, that was a little ramble but I'd love to hear others experiences!
I had a small AVM (the small ones tend to hemhorrage) in the right occipital lobe. It bled, and I had it removed. This all happened a long time ago when I was a little kid in 1959. I have had a left homonymous hemianopia since, and other damage. i always had problems with school, reading, falling, walking into things, and locating something that had been right in front of me the whole time. I can’t drive, but only since 8 years ago did I hear the words “legally blind”. I also have a guide dog, Jim, who is my best friend and has stopped me from falling many times. The not driving is a big problem, and at times it can make me feel trapped. My husband died 18 years ago, too young, and I depended on him a lot. You learn to live with what you are dealt, and I have. Getting older tends to complicate stuff because of other eye problems, and falling is hard on an old body. Don’t ever take for granted that you are lucky to be alive.
Hi Shelby. My AVM was also in the occiptal/parietal lobes but on the right side. As a result of my bleed I have right homonymous hemianopsia. I too am one of the ones for whom it seems to be permanent. It's been almost 7 years and I've not had any improvement.
For me the biggest callenge is not being able to drive. With 2 children who are very involved in sports and social activities it's very hard to get them where they need to be with only my husband to shuffle them, It's also a huge burden on him, although he'd never admit that. It's a lot of stress for him. Like beansy said it is very isolating and I often feel trapped. Like when one of my kids is sick and I can't get to the school to pick them up.
I've adjusted fairly well with bumping in to things but occasionally I will forget and bend down to pick something up and bump my head, or face or whatever on the way up.
I was able to get a prescription pair of prism glasses that allow me to read. That was a huge help. I wasn't able to read before. I'd get too frustrated and quit. I can't wear the glasses to just walk around in as they make me dizzy but for reading they're wonderful! They shift everything to the right so that the words all appear on the same page.
I've not been given the diagnosis of legally blind, so I'm curious who diagnosed you and if you know what the criterea are? I do have a dog, a big, blockheaded lab but he's certainly no guide dog. He protects me just the same and I adore him.
Trish: I was never given the diagnosis of legally blind, either. I kew the parameters of the law re what you an and cannot see, and if there are glasses that will improve acuity to a certain number. The visual field test for homonymous hemianopia has something to do with the amount or percentage of field loss. Stupid part of the law because the way you are facing and the side you have no world on changes as you move around and which way you are looking.
When I was in Delaware from 1975 to 2008, I was told I was not legally blind and I was not allowed to use a white cane. I received no services from the state. Then when I moved to Florida in 2008, I was told I was legally blind. That was when I applied for the Guide Dog School and was accepted. I get paratransit bus service here, and it usually works. I had mobility classes, etc.
I do not believe the laws changed as to legal blindness, but I know back in the day that no doctor had ever heard of it who I encountered. I told them what I had and had to spell it for them. Now in most or all states you cannot get a license to drive with hemianopia, unless you have gone to driving rehab and pass. Then when you get car insurance, I suppose it costs a lot more because theu know you have this vision deal.
Recently,I started having some double vision at different times and circumstances, but I do not like it. Thursday I am going to a low vision doctor with much knowledge of hemianopia.I want to see what they have come up with since I tried fresnel lenses over 20 years ago, which I could not use. They made me dizzy and sick to my stomach.
I too have at times been told I am not legally blind. When I applied for services through CNIB (Canadian national institute of the blind) I was rejected and told I was not blind, despite me not being able to get a license and already being 'diagnosed' by a doctor. I also applied for a guide dog at one school, and was told I had too much vision....but yet now I have a guide dog :P.
I have been doing public speaking, informing people that blindness is not a look, age, or a black and white type thing (you are fully blind or not).
Beans, as far as double vision goes, I have experienced it since I first woke up after my bleed in embolization with visually impairment. I have to do exercises every day to try and strengthen my eye muscles. Basically, you hold a pencil out in front of you and slowly bring it in closer to your face. Every time you see it double, you stop and try and refocus your eyes. Its annoying but generally helpful. Not sure if that would help you but maybe!
Thanks Shelby. I don't know if we have the same visual problems. I was a kid when I had the bleed and surgery, and my brain was immature still. I have been told if you have the same bleed as an adult, you could end up with double vision a lot of the time. I never had double vision because since I was still growing, my brain decided to ignore signals from the left eye. I can see from that eye to the right, but I never used it growing up. It used to wander. I have no convergence between my eyes, no binocularity, and little depth perception. I had the muscles in the left eye tightened about 15 years ago, and it did help. Maybe the muscles are getting loose again. If I did the exercise you described, I would only really be looking at the pencil with my right eye. It is very hard to explain and understand. So I will go to the low vision doctor tomorrow, and see what they say about double vision (which is new to me), and check out any new things that could help me. You never know. Iam hoping for some improvement.
Honestly the low vision doctor I see was the most helpful. I went to a neuroopthalmologist at my neurologists' practice who basically told me she couldn't help me and bye bye. She did tell me that my vision loss was in both eyes, something I hadn't realized up to that point. She never mentioned the term homonymous hemianopsia. That was something I learned from you, beansy, here on this site. It is something my low vision doctor not only understands, but also helped my husband understand. It was so validating listening to him describe to my family how difficult it is for me. Just having him list some of the issues that go along with it, not just the vision loss. It's the fear in crowded places, the lack of depth perception, the unseadiness when walking, the difficulty when changing walking surfaces, the lack of sense of direction, how I get lost in stores and restaurants....All those things my family had no idea I struggled with, even if I tried to tell them. If they hear it from a doctor it makes it true!
Hi Trish and all: I went to a new low vision doctor today, partly because I have not been to one in over 20 years (I go to a regular eye doctor every year, and another reason I went was I thought I was seeing double at times. I am but it is mostly in the evening or night. She said I had a severe ??? Hemianopia, and now cataracts. I will try out the peli lens to see if it works for me. If it does, you can get one put inside a pair of glasses. I tried them over 25 years ago, and they were different than these new ones, but they made me sick at the stomach when I wore it on my glasses back then. I gave up on it. Trish: I also thought only my left eye was bad for a long time. Then I eas informed by a low vision doctor that it is both eyes that are blind to the left and also blind to the left up and down. Trish, when you sit and look straight ahead like watching tv, can you see your own left knee? without moving your head?
That was great that your family listened to a doctor and possibly now “get it”. This is so kuch more than losing peripheral vision. Last night I went to my nephew’s basket ball game. I remembered why I hated high school. It scared me with so many people going every which way, so I stood against a wall waiting for my friend to show up. I did not move until then. And the noises of all kinds were driving me crazy. I got through it, had some fun, but it will be awhile before I do that again. I wish my family could understand or even want to understand why I don’t go out with them much. They think I am a loner, only I am the opposite. i want to do stuff, but it is too hard.
I totally get it beans. I'm often the one standing against the wall or in a corncer because it's much easier than negotiating through the crowd or dealing with people zig zagging all over the place. I do the same thing you did. I stay in one place and wait for someone to come get me. I feel so pathetic but it is what it is. When I look straight ahead I cannot see my my own knee. I do know that I am blind up and down as well. We're so much alike it seems beans. You inspire me with all that you've accomplished!
Hi Shelby and welcom,
I too had an AVM located in the left occipital lobe, 8cm in size, and have suffered the same visual loss, right homonymous hemianopsia. I have been living with this for just over two years now and every day presents its own challenges. I have parietal lobe damage as well so our experiences are shared somewhat. Reading is extremely challenging, not just words but numbers as well. This is one of my major frustrations as I was an accountant so I worked with numbers every day. Reading was not just for enjoyment, I was a voracious reader, but it formed an essential part of my work. It is like being dyslexic.
I miss driving. Not being able to drive takes away your independence and I ate the fact that I have to be driven. I loved driving and apart from not being able to read, it is the thing I miss most. The most I drive now is a ride on lawnmower out in the middle of an athletics track. It is not the same as driving a car but it does reinforce why I should not drive on the road. Apart from not being able to see anything on the right I cannot process everything that is going on.
I still bump into things. My latest was running into the letterbox while I was mowing the lawn. It left a nice bruise on my arm. I just did not see it. I know the letterbox is there, I installed it a few years ago, but if you cannot see it as you are approaching it, there is no visual cue to tell you to avoid it. You have to remember to scan as you walk.
If ever you need to talk just drop me a line. I can totally appreciate what you are going through as I am going through it too.