has anyone been diagnosed with hemianopia? if so do you have any useful information
My daughter has hemianopsia in both eyes. The most helpful person she’s seen is a Neuro-ophthalmologist or go to www.hemianopsia.net
For us, we have to constantly remind my daughter to move her head side-to-side instead of trying to just move her eyes. She’s gotten better, especially when she’s paying attention and not distracted.
Yes, I have lost the left field of vision in both eyes. The morning following my right temporal AVM embolization, I woke up and turned on the TV to watch the news. Initially, I thought the hospital had really crummy TV's. When the doctors made rounds, I realized I was only seeing half of what I was focused on. The entire left side of what I looked at was obliterated. I was immediately taken for an angioplasty to break up a blood clot in my brain. It is the belief of my hematologist that my body went into overdrive producing clots whenever I had a procedure done on my brain. I had previously experienced pulmonary embolisms following coiling of a large aneurysm. I am 14 months post-op at this time. My vision has improved; what was obliterated is now blurry. I can see things if I change the way I look at something and take my time, but still blurred. I still miss things on my left. I don't have the luxury of seeing someone coming up on my left when walking. It's more like all of a sudden I'm walking into someone that came in front of me on my left. If I walk too fast, I cut corners too short and walk into things. I'm not driving because you need to be able to have very quick response time. I still make myself read, though it takes longer. I have added bright LED lights to most of my lighting; it helps. I use a homemade margin guide to help me read. I slow down, to keep myself from walking into things. There are organizations for the blind that can help, with tools and information. I'm going to check into special prism contact lenses, to see if that would work.
I wish you the best of luck. Don't give up hope for improvement.
I have hemianopsia. My AVM bleed was almost 8 years ago. It was quite challenging in the first 6 months or so, but I have learned to work with/around the visual field loss.
The brain is responsible for what we see: your eyes turn the things we "see" into neurological "impulses" by way of the Optic Nerve. The Optic Nerves from each eye meet at the "chiasm" and share some information, then continue to the brain.
When there is similar visual field loss in each eye, we think first of "brain damage" ... head injury, stroke - AVM bleed! There are Neuro-Ophthalmologists out there who may be able to help. I did not seek one out, I just remember to turn my head and eyes a lot. I still have my driver's license & haven't had any accidents (not even a close-call!) I was able to return to my job as an Optometric Assistant.
The "bottom line" is that having a hemianospia isn't such a bad thing... all things considered! Stay positive and remember "it could be worse"
If possible try and see Eli Pellie at the shapens eye institute in Boston. Or other similar recommendations
I have been a hemianoptic for over 50 years which was when I had an AVM bleed.. No one ever told me what it was called, why I walked into everything, did lousy at school, and never had any visual rehab. BUT I have done well in my life, was married for a long time, have a son, and became a paralegal with no college. Those were the days you learned on the job. I am intelligent and was able to learn in my own way. Hemianopsia affects people in more ways than you can imagine, and is not just loss of peripheral vision. It causes perception problems, depth perception can be affected, binocularity is all but gone for me, and I forget there is a left world. If I am distracted and moving too fast, I will hurt myself or someone else. Sometimes I see double. I actually have a guide dog now who keeps me on my feet instead of on the ground. I can read, but slowly, I do not drive. I think if you can compensate in some way, not feel sorry for yourself, you will be fine. Also tried the prisms and hated them because they made me feel sick to my stomach.
beans
I have an AVM that has not bled but I had a whole bunch of embolisations and gamma knife radio-surgery to occlude it. This resulted in me losing a lot of vision on the left hand side , (in both eyes) and the neurologists and opticians call it "quadrantanopia verging on hemianopia".
I am no longer allowed to drive as there is a legal minimum field of vision for driving here in the uk which I no longer meet by a mile, so now i use public transport and a bicycle when the roads are very quiet.
(With the significant visual field deficit on the left hand side, if I was driving along on the left hand side of the road here in the UK, looking at the centre line on the road, and someone stepped into the road from the pavement , I simply wouldn't see them, so I'm happy not to have that responsibility).
I also moved house and now live within a mile of where I work.
I still do my job which is heavily technical work on miniature electronics and computers, but I have had to adjust my expectations somewhat, being patient with yourself helps a lot.
I of course regularly bump into people who walk up to me from my left... if they expect me to politely avoid them whilst walking I of course just blindly barge straight into them, and then apologise with great embarassment... so I'm not very keen about crowds... And I do have a few small scars and marks on my left hand side from where I've just walked into things... lucky I don't work in heavy industry or in a dangerous environment!!
I'm so so lucky that the vision loss has had a minimal effect on my life. Staying positive and realising how fortunate I am compared to some others has helped to keep this in perspective.
I hope your condition improves and that you adapt to cope with it.
I have had homonymous hemianopia since I had a stroke in embolization in 2008. It changed a lot of things for me. It took around 5 years for me to come to point of acceptance of what my life was going to be like from this point out. I always thought that the vision change was due to brain surgery, but recently I found out about the stroke and had I not had it, my vision could have come back. It is tough to deal with but all I can say is learn your local bus route and guide dogs make it better ;)
That's it, Beansy! Good for you, not letting this get you down; instead you moved on and adapted to it. You're right on the depth perception; steps are tricky for me. I have trouble with anything repetitive; such as letters, numbers, and objects; I'm having trouble identifying the exact amount of what I'm seeing. Visual issues aside, I feel very lucky. I know how bad it could have been. Besides, my clumsy calamities give my family and I something to laugh about. It's good to know your experience with the prism glasses. Since I can't even walk wearing my reading glasses(get dizzy), I would likely have the same problem with prisms. Thanks for sharing. I appreciate the input of others experiences.
Hi i had my bleed two years ago and my whole left side was affected. My vision has improved along with everything else it just takes time
And a lot of work. remember to keep your head on a swivel and your eyes always moving eventually they will turn into habits.the most important thing is not to give up hope and remember just because things change
And you might not be who you were dosnt mean you can’t be better
I have a left homonymous hemianopia a complication of a general ‘left-side neglect’ resulting from a stroke I had during skull flap replacement surgery two months after my craniotomy. I’m 9 years out now and it’s more of an inconvenience than some insurmountable obstacle. At the least, I don’t have to worry about fuel prices, insurance, vehicle maintenance…
thank you everyone for your advice x
I've always had a homonymous hemianopia on right side. We aren't sure exactly how, because I had a CAVM but this did not bleed before it was treated. I'd like to say Ive accepted it (Im 30+) but actually I hate it, particularly that I'll never be able to drive. Its worse then the weakness I have on the right as well. There are ways around things. I should walk slower than I do, but I find it hard accepting my problem.
Sorry if this is rather negative, for the most part I try to be positive about having had an AVM that was successfully treated but I don't manage with this.
As far as advice find out whether there are discounts available on things like transport. In the UK there is a registration, when I was registered it was "partially sighted" I think it might now be "visual impairment". I might help with discounts, for example I have a bus pass and discounted rail travel.
My bleed was 4 years ago and I woke up to a blank in the entire left half of my vision. It was scary but the hospital staff suggested vision therapy. There's a great local doctor who offers it and I went for a year and a half. My vision is much improved although I do still have a deficit. But I improved it enough to get my driving rights back and I can now navigate through busy crowds without slamming into everyone on my left side. I have prism glasses I have to wear to drive or to see anything far that helps me see a little more on the left.
Here's where I went for vision therapy - I'm sure if you call they can point you to someone in your area... http://www.advanced-vision.org/
I also have it. My bleed was almost 7 years ago. I do compensate pretty well now if I remember to keep scanning to the left. What was great for me was seeking out a low vision specialist. Not a neuroopthalmologist, necessarily. THere are eye doctors who specialize in helping people with low vision, for a variety of reasons, including hemianopia. When i went to see mine, he helped me understand what all is affected beside just the vision loss, like beansy said, it's so much more. He did prescribe a pair of prism glasses for me but only for reading. Like beansy, they make me dizzy if I wear them for too long and I definitely can't wear them walking around. For reading though, they changed my life! I was an avid reader before and I was so frustrated that I couldn't read after my bleed. It still takes me a long time to read a book but at least I can again. I won't drive again but, all things considered, life is still pretty good. Do check out the website Tina recommended. It helps explain a lot.
You sound like my husband, Michael! He got me off that vehicle insurance so fast I couldn't believe it! I keep hoping vision will improve, but it's been 3 1/2 years since surgery and the neuro-opthamologist felt improvement would happen in 6 to 12 months, if ever. It's an adjustment, that's for sure. I'll try to keep that humor of yours!
I am just beginning to realize that I haven't started the eye defiency acceptance yet. I've had multiple hemorrhages from and AVM, but my eyes were never affected. Since my craniotomy 3 1/2 years ago, I have a total homonymous hemionopsia. I no longer drive and bump into everything. The words dropped at the end of a line when reading improved, although I can't say it's relaxing or fun to read. Daily stuff is just plain work! Do you use a guide dog? They suggest a dog that is not low to the ground, thigh high. I have cerebellar issues and poor balance and coordination. My feeling is a dog is one more thing to worry about and get in my way. What's your take?
I too bump into everything. I have poor balance so I walk really fast as to not fall over. Slow walking is the most difficult thing, but does keep you from crashing in to people. I don't look as though anything is wrong, so when I don't see somone on my left, or someone's hand when they extend it to shake mine, it's embarrassing. When those I bump right into give me a dirty look and don't seem to accept my apology, I hit them with, "I don't suppose you'd believe I'm recovering from brain surgery!" You should see their faces and they still don't believe me. I guess I'll just have to hang with the fact that people often just think I'm drunk! If only I were having fun!
How much help do you get from your guide dog? Is it a big or small dog? I have all the same problems you have. The depth perception is difficult. I had my first brain hemorrhage in 1973 when I was just a kid. I went on to have well over a dozen bleeds in my 20's. Surgery was never an option. I had two bouts of Proton Radiation. 38 years later, it hemorrhaged again. Medical advancements led to a craniotomy. I have my life, but also now have a total homonymous hemiopia. Life has changed. I no longer drive. Being in crowds is down right draining. I was just reading a Christmas card and thought the sender forgot to sign it. My husband informed me that they did--on the left! I better scan a little more.
I know they have balance dogs. Today someone called from a blind center. That freaked me out. They walk with white canes. The lady thought it would at least tip others off. So would a dog. Both are one more obstacle for me to maneuver and think about. Just curious how much the dog helps. Thanks, Susan
Jimbo the guide dog comes from Southeastern Guide Dog School in Palmetto FL. i was always told I was not “legally blind” until 8 years ago. i applied to the school, was accepted, and stayed there a month for training. Since I do have some vision on the right, the training was a bit skewed for me. There were other people there who also had some vision. I was the only one who had a vision problem that was not an eye health issue, but a brain issue. Before I went to the school, I had to learn, for some rason, how to use a white cane. i did not do well with it. But it did help other people to stay away from me. The dog, who I have had for 3 uears, is a black lab. He walks on the left, never runs into me, follows commands. His presence lets others know they also should stay away from me. i don’t fall half as much as I used to. He can find the door when I forget where I am, he can lead me home when I say home. i don’t run into things and people anymore, and he does keep me balanced. Besides that, I love him and I never before had a dog. my husband died 18 years ago when he was 47. I would be alone if not for Jim. He is my best friend.
Beans. Attached is a pic of Jim
103-image.jpg (113 KB)
