Hey ya'll. I'm so thankful for this forum! A few months ago I was diagnosed with a grade 4 AVM in my right occipital lobe. I have never had any noticable symptoms, but I failed a peripheral vision test at the eye doctor while trying to get some new contacts, which led to this life changing discovery. I have gone through 3 successful embolizations at Stanford. I have been informed by Dr. Steinburg (my primary neurosurgeon) and Dr. Lawton (my second opinion, at UCSF) that a craniotomy will be necessary to remove the AVM completely, and that I will likely suffer a more substantial visual field cut on my left side. I have come to terms with this, but I would really love to speak with- or email with someone else that has this deficit so I can understand it better. If anyone is willing to reach out, please do!!
Hi RWT,
Head over to the Occipital group. Most of us there suffer from Hemianopia, my visual field loss is on the right side, the AVM was on the left and was 8cm in size. I had two craniotomies to remove it. My AVM bled and that's how I found out.
It is scary but you have the advantage of knowing what is going on and therefore able to access information before your operations.
Have a look at the stories in the Occipital Lobe Group. Ask questions. Use the support on offer.
Stay strong.
Cheers,
Zak
Ruptured can in Right Temporal = 20 o/o Left Field cut Clip cut blood supply to Occipital No driving ( lots of Uber... but a girl doesn't mind a chauffeur ) 6 years post, vision is improving loss of freedom is Not
Regards,
Hi runs. I have had a total left homonymous hemianopia for 56 years. I had an AVM rupture whwn I was 8 in 1959. Ask me anything, and if I doon’tknow, I will try to find out. I have done a lot of reaearch on hemianopia and AVMs.
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Hey Runs, My avm was in my occipital lobe and yes after surgery I had a vision field cut in my left eye. I bled second time in surgery and that did more damage than the first bled, but alot of that has cleared up. I have no headaches or seizures and should be able to start driving again. We do continue to heal and it’s a slow recovery!! Good luck!! Pat
Hi Run,
My daughter had two embolization and then a craniotomy done in August 2015. She did have a little set back after the craniotomy and had another embolization done. Her AVM was on her right occipital lobe. She did have some peripheral loss on the left. Slowly she started to gain back some of her peripheral. Today she went to get an angiogram and her AVM is totally gone. My daughter is currently training as a dancer.
Good luck and stay strong.
Hi
I never meant to be a downer because I did not get vision back. mine was in the right occipital lobe, but it was 1959, and I am so lucky to be alive and be able to see a little. I even became a paralegal for a state attorney general's office.
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