Hi Will, I too had an AVM on my left side. I went to an eye doctor and was given a pair of eyeglasses for my left eye. When I finally found out I had an AVM there, my new doctor (Dr. Kupersmith, who is an Orthopedic Surgeon) told me to throw them away. He is also a Neurologist with my AVM doctor, so he has seen this a lot. I was surprised as well, that they were suggested to me. Grace
No one here should feel badly about not knowing what the eye deal you were dealt with is all about. Doctors do not even know.
I felt like an alien for the greater part of 53 years. NO ONE WAS LIKE ME, but I did not know it.
I thought my vision was the same as anyone else.
I thought I saw the whole world.
I drove?????
I searched for someone to help me when I finally figured out what went on. I knew more than most doctors. I even knew how to spell hh.
You need to know about the following. It helped me in just knowing about it. I don't know if I have it,
There is a brain condition called Anasognosia, It may be a mental disorder, but it is also due to brain changes from bleeds, surgeries, etc.
âȘThere are two types of denial. The first type of denial is an emotional one. Something has happened that is so terrible, or so frightening that a patient just don't want to deal with it.
The second type of denial comes from changes to the brain. The brain literally refuses to process certain types of information.
beans
Hi, Will
Sorry about your no peripheral vision in your right eye. I also experience the same effect. I found out about my Brain AVM due to my Facial AVM in the lip. Before then I thought it was normal to have headache because I was tired later it was more than a headache. I had an AVM in the left intraventricular area near the posterior temporal region, which was diagnosed in 2006. I had status post stereotactic radiosurgery on o1/2008, and had a hemorrhage in 01/2010 from the brain. But before then I was having increase vision problem on the right side of my peripheral vision due to the radiosurgery in 2008. Not to scare you but in 2009 before the bleed I WAS suffering with double vision and black out. I survive the hemorrhage in the brain so right now my eye sight has improve but I'm so use to it that the no peripheral vision in the right eye is normal to me now. To tell you the true once you lose one of your senses the other 4 increases. Hope for the best! Ever person is different.
Mike
mine was found when they did a cat scan becuse of a concussion when i was 19, mines on the lower left side of brain, Its makes alot of weird vision probs that come and go, it gets worse older i get, Had gamma knife sugery year ago and so far it hasnt worked any for me, good luck hope u live a long and good life.
@Leslye it's located in my left temporal lobe, too deep for open surgery.
@Grace is that Dr. Kupersmith at INN/St.Luke's in NYC? If so he's the neuro opt who told me about the vision.
I was diagnosed with unruptured AVM, left temporal love. 2 weeks ago, also have been diagnosed with Glaucoma. My neurologist is young, he admits he doesnât know much about AVM. I think AVM amd glaucoma are related, he doesnât know. What kind of specialist r u seeing for eye issues. Iâm seeing a regular opthalmologist.
Hi govanjoo ,sorry to here the news ,
I have also ruptured left cerebral occipito parietal AVM , almost three months back with visual field defect
I think you may consider discussing with your neurologist the possibility of a consultation with a neuro ophthalmologist and an intervention neuro radiologist and neurosurgeon .
Thank you, I have a CT scheduled next week and I see neurologist 2 weeks later, so I will definitely ask for a consult. I try to talk with other people about it, but they donât seem to grasp the concept. I have friends in the medical community, and they are a bit easier to discuss things with. Everyoneâs advice is priceless.
My doctor is young. Donât think he knows much except what is in textbooks. Have a CT scheduled next week, then see him 2 weeks later. I got the MRI report, but it doesnât show size. I asked the doctor about it and he said we will know more after CT. He did mention embolization. Not sure how he knew that. My vision has been really changing over last 6 months. I feel something is off. He will refer me after CT
My AVM is left temporal, ruptured in May 2016 and had gamma knife in November 2016. I did not suffer any visual effects, however it was one of the deciding factors in going gamma vs. craniotomy. My neurosurgeon felt there was a fairly high risk of vision issues, particularly right peripheral if he did the craniotomy. I see you are in LA, Iâve had heard amazing things about the neuro unit at UCLA, might be worth a consult if you havenât been. Take Care, John
I thought it best to follow up here. After I posted back a few years about my peripheral coming and going, now its gone for good. I quit driving and had both an ophthalmologist and a neuro-ophthalmologist confirm that the peripheral vision loss I am experiencing is likely permanent. Ah well, the Lord is good and weâll move right along as it is!