Hi everyone, I'm a new member of the group. I’m a cognitive neuroscientist at Johns Hopkins University, and I’m studying an unusual reading disability that can occur after an AVM bleed or other stroke.
People with this disability can see clearly, except that letters or numbers look blurred or distorted. The problem may be so severe that letters or numbers are impossible to read. For example, I'm working with a 12-year-old girl with a large AVM that bled in 2011. After her stroke, she saw letters and numbers only as blurs or smudges, and she was completely unable to read or do math for almost two years. Fortunately, we were able to create modified letters and numbers that she could see clearly, and she can now read again.
I’m trying to find other people with this sort of problem with letters or numbers, for a research study aimed at understanding the disability better, and developing effective treatments. Both adults and children are eligible, and need not live near Johns Hopkins.
If you would like to learn more about the study, please reply, or send me email at ■■■■■■■■■■■■■■■■■■■■■■■■■
Let me add that I would be interested to hear from survivors who have experienced visual disturbances, even if you are not interested in being part of a study.
Maybe you can answer this because my doctor can't. I only had a seizure and no bleed but I am having more trouble with numbers. I mix up numbers or completely write the wrong ones down when I transfer them. For example I will type or call a number and it will be completely wrong. I have no idea where I even got it from.
I am pre op avm removal and reading can cause issues in consent ration to the point that I can’t read for pre longed periods and it actually brigs on headaches. Ok I can read but after a short period of time such as 1 page the words become blurred and I struggle like hell to continue.
I'm sorry to hear about your trouble with numbers. Even when an AVM doesn't bleed, it can affect brain functioning. The seizure, and your number problems, suggest that your AVM is having some effect on your brain. One possibility (among many) is that because a lot of blood is flowing through the AVM, part of your brain near the AVM is not getting enough blood, and so is not working normally. I see from your profile that your AVM is in the parietal lobe, and this is a region that is known to be important for numbers and math.
I don't know what tests you have had. Additional tests might shed light on what is happening, but it is also possible that nothing definite would be found. If your troubles with numbers become worse, or you have new symptoms, I would recommend getting in touch with your doctor.
To cut down on mistakes with numbers such as phone numbers, you might try covering most of the number while you look at the digits one by one. For example, one person I've worked with used her two index fingers to let her see just one digit at a time between the fingers, and this cut down on mistakes like calling Alaska instead of Maryland.
That sounds very frustrating. Many people whose reading has been affected by a neurological condition say they can only read for a short time before becoming tired or getting a headache or having trouble focusing, and we don't always know why. These problems seem to be different from the kind I am studying, in which letters are blurred or distorted even at first.
I hope your upcoming surgery is a great success, and that it helps with your reading.
Hi, my son had a bleed in October in his left temporal and occipital lobes. He has heminopsia and Alexia without disgraphia. At first he could not read at all. He could identify some letters, but not all. He could identify numbers. He is recovering his ability to read slowly, but surely. It doesn't sound exactly like what you are looking for. He did say initially things looked like gibberish.
I'm sorry to learn of your son's bleed and difficulties with reading, but I'm glad to hear he is making progress in his recovery. Especially given that the bleed was recent, I think there is good reason to expect him to continue improving.
I would be interested to learn more about your son's reading difficulties, and would be happy to answer any questions you might have about the hemianopsia and alexia without dysgraphia diagnoses.
My AVM was first detected in 1986 as very small. By 1988, it had grown significantly. I had a AVM surgery in 1989. It was a long operation of about 26 hours. When I was young, I could read books at amazing speeds. The Odyssey was just a fun read for me one weekend. Textbooks on chemistry were fun to read. After the surgery, it has become very hard to read any books.
The words don’t actually blur, but I have to concentrate a lot more to read. It’s very easy to lose track of what’s going on in the book. I’ll be reading and suddenly realize I don’t know what’s going on in the book.
So, I’ve been trying to figure out why I’ve become so lazy that I don’t read like I used to read. But, no matter how hard I tried to read, it didn’t work like it used to work. That is why I was very interested in your work. Could this change in reading be a result of the AVM and the surgery?
Could this change in reading be connected to the AVM?
The difficulty you have with reading could well be a result of your AVM and surgery. Reading is a complex process that involves many mental processes and many parts of the brain. If any of these are disrupted, reading may be affected.
If you could tell the location of your AVM that might give me a better idea of how it could have affected your reading.
The operation was done by Dr. Robert Crowell and Dr. Gettleman at UIC (Univeristy of Illinois Hospital). It was in the left anteromedial temporal lobe next to brain stem. When they opened up my head, they also found old hemorrhages from the AVM. They closed connection from the AVM to the left distal posterior cerebral artery, some brain stem arteries, anterior artery, and middle cerebral artery.
There is also a comment about a Right frontal Richmond Bulb placement. But I don't understand this one at all.
I had a DAVF, not an AVM. I did not have a bleed but had swelling in the left temperal lobe (speech). My husband noticed speech issues, called my doctor who suspected a stroke. I was admitted to the hospital and remember vividly staring at a sign on the wall all night trying to read it without success. My doctor saw me the next morning and I was completely unable to speak to her. By noon, I had minor success with a speech therapist. The following morning, I was able to do the Sunday crossword puzzle. This happened 10 years ago. I still have problems related to the area where the swelling was......I will say left and mean right; I use a word that is on my mind rather than the one I want; I have trouble recalling words and will substitute a synonym; I sometimes transpose numbers but my deficits are mainly with words. For the most part, I am extremely lucky. My problems are relatively minor but I am aware of them and work around them every day. Hope this adds a little more to your study.
I'm very happy to see that you are taking the time to do this study. This helps me to put some faith in drs again. I was at John Hopkins 3 years ago and they couldn't help me. I'm very happy to hear that you could help this child. I want to thank you for caring so much for her well being. :)
To answer your question. This problem for me, comes and goes. Usually when words and such are blurry for me. I'm experience subtle vertigo (which I get quite often). When I'm well rested, my vision clears up again. Sometimes Ice- packs help too. One of my dr's believes this happens when there is some swelling in my brain at the time. It's been my experience that when my head/brain gets inflamed. That too takes a toll on my vision. Also - it's not just letters and numbers for me. It includes anything that's small and detailed. Even pictures with intricate details, I can't make them out.
I am curious to know what the girls cognitive abilities are. Many of us suffer with or get "brain fog". For me - this messes up my vision as well. Along with my short term memory.
We don't always know what causes problems like blurry vision or vertigo to come and go. One possibility is that if some brain areas are getting a barely-adequate blood supply (as might be the case for someone with an AVM) even an insignificant drop in blood pressure might mean that these brain areas aren't getting enough blood to function normally. Then, when blood pressure goes back up slightly, the functioning improves.
Regarding the girl I am working with, her cognitive abilities are normal, and now that she is reading again, I expect her to make up the ground she has lost in school.
Thanks for sharing your experience. I'm glad to hear you recovered almost completely. We often see in stroke survivors that minor difficulty coming up with words (called anomia) lingers even when everything else has recovered.
I couldn't say for certain without seeing your MRIs, but it sounds from the location of your AVM and the arteries involved, that the AVM very well might have affected brain areas important for reading. I'm curious whether you experience difficulty concentrating only when reading, or other times as well.
I don't understand the Richmond Bulb comment either.
Thank you Mike. I wasn't expecting you to comment about my vertigo. I like nice surprises... :)
Why do you think it is that the girl can read with a double strike through the words now? I find this very interesting. Do you think it encourages her to focus more? Or Is it tricking her visual field (so to say) drawing her focus inward?
Is she showing any sign of improvement, that some day her eye sight may return to normal? The poor girl is to young to have these kind of problems. At least in my book she is... :)