My AVM was in the left parietal lobe, and when I had my initial stroke, my right peripheral vision was affected. The vision has gotten better over time, I am now almost at one year post-cranio and the excission of the AVM, and I still have intermittent issues with the peripheral vision in my right eye. Quite often, it seems like I can see things moving out of this eye, almost as if someone's chest is rising and falling?? Other times, I see "shadows", and it seems like I have over-sensitive peripheral vision in this eye, like I can see every little thing going on to my right side. Some days this isn't an issue, and sometimes I will notice it for days and days. I constantly compare what I can see in my right peripheral field to what I can see in my left, and its a huge source of worry for me. I worry I am having another bleed that is causingit, or that something in general is wrong. Has anyone else experienced this?
My AVM was in the partiel optical part of my left lobe as well. I lost my eyesight in my right eye for 2 weeks. I still have issues with my sight sadly. I see shadows at times, sometimes spots which was a symptom when I started to go blind before surgery a month before. Your not alone.
Kat
Rachel, my AVM was in my right occipital/parietal lobe. I have a left visual field cut in both eyes. You mostl likely also have some vision loss on the right side of your left eye also but you don't notice it as much. That was the case with me. I had no idea it was in both eyes until I saw the neuroopthalmologist who tested both of my eyes. Anyway...I'm four years post bleed/crani and it hasn't improved at all, probably never will. I too experience the shadow issue you describe. For me it's actually worse if I close my eyes. My brain thinks it's still seeing what I was seeing beofre I closed my eyes (if that makes any sense?) I would recommend seeing a neuro-opthalmolgist or at least an eye doctor that knows something about visual issues as a result of a brain injury. They can do tests to make check for a cause but my guess (but i'm no doctor) is that it's just the way it is now and we just have to try to live with it.
Hello Rachel. My AVM Bleed was located in the right parietal/occipital lobe of my brain. My left peripheral vision is gong because of this. Every now and then, I see shadows and spots. You are definitely not along in this.
All the best to you.
My AVM was in my right frontal lobe. I think I have peripheral vision issues but every time I tell the Dr and he does that finger test ("tell me when you see my finger") I pass it every time! Have never failed it but sometimes I don't see someone coming in from my left side until they are walking in front of me or (what feels like) right on top of me. It freaks me out and it makes me jumpy in public because I am just so unaware. I also see figures, a lot of times it looks like a short shadowed figure standing just outside of the reach of my peripheral vision. My husband thinks I'm seeing strands of hair and thinking they are something bigger, like a person. I did a bit of research. I'm not sure of where exactly my AVM was, no one ever really gave me more than a generalized description. Something about it being between two flaps of sections [?] Idk. But I know where my migraines used to be and that's what I used for my research. I found a "brain map" and according to the bit of info I remember being told and where I "feel" my AVM used to be, my AVM was located somewhere between my frontal and parietal lobes. Possibly affecting my "spatial sense" which includes 3D awareness and dimensions. But, I'm not real sure because the map confuses me LOL. http://hiddentalents.org/brain/113-left.html
^^Here is a link to the left side of the "brain map"
My son had some peripheral vision loss after they removed his avm. He runs into things quite often. He has only been home from the hospital for about 3 weeks, they say that it might get better with time. As of right now we do not know exactly how much of his vision he has lost, we are waiting to see the eye dr later this month. He is only 14 years old, and he doesn't seem to let it bother him that much, but I think at his age, that is normal, and he hasn't had much time to get used to it. We were told before they did the surgery that it was a possibility that he could lose half vision in each eye, so I think with where the avm is located in your situation is probably about the same as my son's, just on the opposite side, as my son's operation was on the right and he lost vision in the left eye.
Hi Kristi - oddly enough, I thought that I was the only one who didn't see someone coming from my left side, and not seeing them until they were right in front of me! I would always get jumpy, and the people that I'm around seems to find that odd. I'm glad that I'm not the only one. How are you feeling?
It happens to me all the time LOL. What I hate the most, and I'm not sure of the level of normalcy on this, I can't hear people walking behind me for whatever reason, I can only "sense" them back there and it makes me even more jumpy and anxious because I still don't know how to trust this "sense." I still think it's weird so I don't blame anyone for thinking the same LOL
My AVM is in my right parietal lobe. My surgeon said that Gamma Knife was a better option than surgery because I would have a greater risk of losing my left field of vision in surgery than the risk of a rupture while waiting for GK to shrink the AVM.
Does anyone experience the in and out movement, like someone's chest is moving? That's what bothers me the most.
Trish,
My son's avm was very similar to yours, in the same area, right parietal lobe in the vision field. We were told he would loose half the vision in each eye. The dr's did vision screening (with their fingers) at the hospital after my son's surgery last month. They seem to think he only lost some vision in his left eye. I am not so sure. He cannot see anything out of his left eye until it is in front of him, if there is anything to his left, he runs into it, he walked out in front of a car today, didnt even see it bec. it was on his left side. I am so worried about this. I was just wondering, since you said you lost half the vision in your eyes, if this sounds similar to what you see? We cannot get into the eye dr. until later this month, so just wanted to see your opinion since you are going through the same thing. Thank you.
I haven't lost as much vision as most people on this site but from what I've learned through experience and one of the constants all the many therapists I've worked with agree on is training your brain not to neglect the affected side. I am constantly reminding myself to be aware of my left side (as I'm hemiparetic) and I assume it would be the same advice recommended for your son....don't let your son's brain forget about his left field, just because he can't see it, doesn't mean it doesn't exist...point proven with the car.
You and I are twins but opposite sides. I’m getting my eye checked on a week…pretty excited. Wait till a year and a half to see improvement, it’ll come outta no where!
I'm wondering if it could be a migraine aura, which is usually 10-20 minutes before a full migraine. It's common with a migraine aura to see blinking lights, zigzags(i hate that type), cloudy vision.
I always get one BEFORE a migraine. I take butterbur supplements for my migraines, and so I have't had the zig-zag type in a while. Butterbur (75MG 2X day)tends to reduce the frequency and the intensity of migraines.
mayo clinic has a good description of it. http://www.mayoclinic.com/health/migraine-with-aura/ds00908/dsection=symptoms
my migraine auro symptoms are scary, but for me now I know they're my warning, so I'll take an aspirin and can avoid a full-blown migraine. I hate them, but I'm glad for the warning too.
only a neuro can tell you for sure..
My daughter suffered an AVM rupture on the right side temporal lobe. She lost all peripheral vision on the left side (each eye). She can’t see anything on the left side until it’s directly in front of her. She too ran out in front of a car recently, but I believed it was due to the lack of impulse control.
Doctors and therapists tell us the visual pathways have been destroyed. Her eye is perfectly healthy. Her occipital lobe is healthy. But her brain is unable to know how to handle images coming into the right side of her team portal lobe.
My daughter’s is permanent, but some people can retrain their brains’ visual pathways.
My daughter runs into things all the time – doors, people, store clothing racks, etc. we are just trying to teach her to use her other senses to help her adjust.
Hope that helps a bit.
Just read they can occur without headache, so I think you may be on to something.
It says people who have them are more likely to have a stroke. That scares the @*&%$% out of me.
Tina White,
This is what my son is going through right now. He cannot see anything on his left until it is right in front of him. He has only been out a few times since his surgery last month, and he is always running into things. He ran into a big beam at walmart that had a fire extinguisher on it, rammed it into his face and head, he knocked over a display, walked out in front of a car, ran into someone, etc. all in one day!! I am so worried about him if I am not right by his side. I go back to work on Monday and I am so terrified of what might happen to him if someone is not right by him at all times, and when school starts...will anyone help him get around? I am so worried about this. He is 14 and was suppose to start drivers ed this year, but there is no way Im letting him! His dr's and therapist keep telling him to survey his surroundings and learn to pay more attention to what is around him. We go to the eye dr. on the 25th to see exactly how much vision he has lost, but we were told before the surgery that it would most likely be the left half of each eye, and I really do think that is what he lost. We were told there could be some type of prizms they can put in his glasses to help with the vision loss, but we wont know until the apptmt. How do you deal with this?? I know this is not the worse deficit he could have, but vision is very important!
Steph,
My daughter receives therapy to help her better scan her environment. If she’s distracted and walking, she runs into things every time.
Your son’s situation may be very different, even temporary. The doctor will help you understand the next steps. In the mean time, he can play games that require him to scan to the left and right – word searches, some of the Wii Play games, even play games while driving (see who can find each letter of the alphabet), things like that.
Anyone who has suffered from an AVM likely needs to visit a neuro ophthalmologists. That doctor can help your son understand driving and school and how to help him with both. You could ask doctor to get on a cancel list, just in case doc can get you in earlier.
I hope it is temporary, but we were told even before the surgery it would more than likely be permenant, we are just holding out hope that it does get better. The dr he is scheduled to see is an opthalmologist, she saw him before his surgery and knows his story, she is very good at what she does, she is just so busy that we couldnt get into her until later this month.
Thank you for the information, and good luck with your daughter.
Hi Rachel. While all AVM experiences are so unique with each and every one of us, I will tell you that I also have Peripheral vision issues and lost ~10% of my peripheral vision in both eyes as a result of my bleed and also experienced some of the strange occurances of what you explained in your email. Certainly something I would bring up to your doctor if you are worried about it yet I still have these issues and was rendered an AVM-FREE report back in June and am sharing this with you in hopes to reduce your worry with some of this. Please don't hesitate to speak to your doctors about this if you continue to worry.