For my eyes only

OK, I need help if there's anyone out there who is having the same problem or went through the same problem. Where I had my AVM remove from the back of my brain, that part of the brain worked the vision. I lost 1/4 of my right field of vision in both eyes after surgery in 2001. Since 2001 I have struggle with my vision and can't do many things I use to do before surgery. I been in 11 car accidents since 2001 because I don't see park cars while driving or do I see the car who pull out in front of me. Since December 2009 I have notice my vision has gotten worst and my bad headaches have increase. In April 2010 I saw my doctor who put me through several vision test and said that my field of vision has gotten progressively worsen since the test was last done in 2001. The test show I'm 1/2 blind in each eye now. Anything in front of me and to my right I can not see. Two weeks ago 11-3-2010 I had the test done again and was told I'm more than half blind now. What's going on. They did a EGG and MRI and everything came back normal. They now want me to get a second doctor from U of Wisconsin to look at me, but no one is returning my calls and making dates for me to be seen. So I called my doctor and told her this so she said will try other places. It's been two weeks now and I havn't heard from no one. I think no one has a clue whats going on and no one wants to see me. What am I suppose to do. I can't work anymore, trying for ssdi, I quit driving. Starting to lose hope. Anyone else going through this, please help.Delete Comment

I’m sorry for all you are going through, i also feel like the docs just sometimes don’t want to deal with it as it’s easier to ignore a patient than to investigate, like CSI, what’s going on. After my AVM was removed, my vision seemed to get worse but my glasses still worked. Weird. Take a deep breath and pray/meditate about everything. I hope your doc comes through for you!!

My son had a bleed in his occipital lobe, and lost a quarter of vision, the bottom right quadrant. An occupational therapist and a physical therapist are helping him learn to how to compensate. A developmental optometrist diagnosed his tracking issues, and a neuro-opthamologist is tracking his vision loss and looking for changes. Make sure that you are seeing the right kind of doctor/specialist because they all have different knowledge. We got the referal to the developmental optometrist through the OT. We had never heard of one before! Just keep trying, because the squeaky wheel does get the attention. We are in Canada, and had a lot of help from the CNIB (Canadian National Institute for the Blind). Is there a similar organization in your area? Strangley, one of the things that helps my son is using different coloured filters over reading material. It seems that his brain responds differently to green light than it does to white.

Hope that this helps! It is so frustrating when the doctors 1) have no answers and 2)when they are rude.

UPDATE, I went to U of Wisconsin on 11-18-2010 and saw Dr. Levin. DO NOT SEE THIS GUY!!! Very bad people skills. My wife and I drove two hours in hope I would answers in why my vision is getting worst in both eyes. This doctor came into my room without even interducing himself to us throwing his hands in the air saying this doesn’t make sence. He said he has never seen anyone go from 20/20 vision to 20/60 vision and started asking how the heck did I ever pass a drivers test or see small things. Then he turned around and started yelling at my wife saying things like, do you know you husband can’t see small things, do you know he use to drive and he even asked her if she was my wife. OMG. What just happen we thought. We thought this doctor had the wrong room. Then he came back in and started making fun of the small town clinic and hospital who did my MRI and said I needed to come back to Madison to have the MRI done over again and done the RIGHT way was what he said.
I went to this appointment to find out why I’m now more than 1/2 blind in each eye, not because my vision change to 20/60 or 20/20. We were hoping for answers and we came home with more questions. This Dr. Levin wants to do another MRI because he feels I have another AVM tumor that is causing my vision lost. I’m lost now and I’m worried. Please anyone reading this, if I can stop anyone from any pain and suffering, don’t see this DR. LEVIN at U of Wisconsin. I simple I’m sorry from the doctor or from U of Wisconsin would have been helpful. But thanks to everyone who has left a post and offered kind words. Thanks