my AVM/aneurysm rupture resulted in visual deficits, but mainly left-side neglect (resolved in time) and spatial perception which is mostly resolved. I did initially got a consult with an optometrist who does visual therapy, and would have pursued her treatment plan if I had not been able to improve myself. I think this is the optometry group for this, perhaps they have a forum to obtain patients for your study as well. http://www.aoa.org/x5411.xml
My own visual therapy was in the rehab hospital, family actually spent many hours teaching me to read the time on a clock. later, tennis on the wii, which i felt was a tremendous way to learn depth perception and build strength. wii sports games, to be exact.
I was very lucky, my primary deficit post stroke was left-side paralysis, everyone was surprised i was able to walk again, so the rehab was mostly focused on physical therapy and physical recovery.
I did have spatial perception and left vision neglect (i'd skip the left letters and not realize it.) for spatial, I had to 'relearn' to read a clock and would knock into things on the left side. That was a matter of months before i had minor issues.
I wish you great luck, my visual recovery has been such a blessing in my life, and i completely take it for granted now.
Your research study is very interesting. I had an AVM rupture four and a half years ago. Lately I notice I am beginning to reverse the b and the d when I write. This happens when I am very tired. I also notice that when I try to draw a happy face it always appears sad. Perhaps I should be concerned.
Yes! I type in numbers on my phone that are wrong too. I end up calling a wrong number over and over. Tracking sometimes is difficult when I read. Mostly when I am tired. I trained myself to reread the material.
My daughter was almost 7 when her AVM ruptured. She’s now 11. But any type of reading gives her a headache. The bleed was right temperoparietal. Homonymous hemianopsia on left side and almost tunnel type vision in right eye. Acuity ranges from 20/40 to 20/150. We are now thinking Braille may be her best chance. I asked her about any distortion, but she wasn’t sure. Just thought I would mention it.
My AVM was located on/near optic nerve and the bleed caused acute vision loss that thankfully was only temporary. My bleed happened between semesters of college and severely impacted vision during the following semester. I was able to get through it, barely. I think what got me through was repetative reading. I read a history of WWII book that was 1000 pages long before even starting the semester. Straining to read this, I believe, 'retrained' my brain on being able to read/understand. My neurologist was amazed I was able to read and comprehend this book. He tested me often by asking what I had read on previous pages - I also had had short term memory problems. My hand/eye coordination, however took many months to improve. (I almost failed my welding and machine shop mandatory engineering classes)
Ironically, I am now losing my vision again due to a rare type of back of the lens, fast growing cataracts. I had thought the radiation treatment of my AVM was affecting/killing my vision until the cataracts were found.
Good Luck, Mike, in your research. Vision is a scary thing to have problems with. I really hope you can help this patient and others.
Thank you for sharing your experience. Neglect can be difficult to overcome, and I'm happy to hear of your success with this, and in regaining your ability to walk.
In my experience, being tired often makes a big difference for someone living with the consequences of a neurological problem.
I would be happy to discuss the mistakes you describe, and would be interested to learn more about them. They might be related to to your AVM bleed, although I couldn't say how likely that is without knowing more. If you'd like, you could email me at ■■■■■■■■■■■■■■■■■■■■■■■■■.
I'm sorry to learn about your daughter's AVM and her difficulties with reading. Braille is certainly an option. Another possibility might be to rely on the now-quite-good text-to-speech software that is available.
You are so right, Mikein. When I get tired, all of my symptoms get worst. I rest in intervals through out the day. That way I can get things accomplished with little difficulty.
That's funny. I have trouble waking my brain up. Ha Ha.
I'm usually pretty good the first few hours I get up in the morning. Then it slowly goes down hill after that. I haven't figured out why it does that - yet. I eat right, so it's not that. My theory is: I think it (my brain) gets depleted of oxygen as the day goes on. I just started trying oxygen therapy to see if that makes a difference or not.
I will. My friend who is on oxygen has two compressors. We've been keeping one of them at my house for when she comes here. So... I'm taking advantage of it.. Hee Hee
It seems to help me with my light headedness (that comes from my vertigo). I'm still experimenting with it to see what other effects it may have. I have the level (how much it puts out) figured out. Now I need to figure out how long I need to wear it and at what intervals. It's a little tricky since I can only use it here in the house. It's not a portable one but, it has a 50' hose to it. Hmm? Maybe I can take it outside to do things around my house. I'll have to try that! (brain storm - ha ha)
What an interesting subject that you have brought to us here. My avm was in the left occipital lobe and I found out this month that it has been obliterated. I was told that it was high risk and had multiple small aneurysms. I had 2 embolisation treatments in a week. After the first treatment I was very sick and vomitted for 4 days but also had vision problems which meant that I could not read. Consultant thought that my AVM could be unstable and he decided to do the final and second treatment which again brought extreme pain and sickness and vision problems continued.
When I was brought to get my vision checked it was very difficult to read the chart and I felt that the letters on the chart were changing in size and felt that the letters were actually coming towards me.
I am left now 6 months after surgery with a spot of central vision loss and find it difficult to read. When I look at people's faces I can only see the left hand side and when I am sitting in the passenger seat of a car and look at the other side of the road I can see cars in the distance but as they get closer to me they will disappear in my blind spot and then reappear.
My opthamology consultant is unable to do anything for me as he said there is nothing wrong with my eyes and it is a processing problem. He has referred me on to the low vision unit to see if they can help with my reading. He also talked about prisms, although he said that they weren't very successful.
Yes but with the state of health care in Canada, it may be a while. If my right eye follows the progression of my left eye I will be pretty sight impaired in about two months. The soonest I can get surgery is possibly August, so the race is on.