Hello everyone! I am happy to report that I had my occipital AVM removed by craniotomy last Tuesday at UCSF. Everything went well and the doctors were pleased with the results. However I do feel like thy just dropped a pile of complicated information on me about rehab that I don't totally understand. I suffered a visual field cut on my right side and a little bit on the left. I know it's very early and there is still swelling. But I was given a referral for occupational therapy with very little info about what I need for rehab. (Will call next week when everyone's back from the holiday.) The first couple of providers I called were not equipped to deal with this or even understood what I need. Neither do I, really. I remember someone on this board talking about the need to request a neuro-opthalmologist to see me. I can't find any such providers, even in the San Francisco Bay Area.
Any guidance on service services for trying to restore my vision and/or learn modification techniques is most appreciated!
First of all, congratulations, Julie, on your successful surgery -- I am so glad you are doing well. It looks like UCSF itself has a neurophthalmology clinic:
Hello and YES, Congrat's on the success of the removal. I lost vision in both eyes to the left. This was called a Left Homonymous hemianopsia. this all happened 25 years ago after undergoing emergency brain surgrty for the ruptured AVM. Pre-op Diagnosis and Post-op diagnosis were the same. Large right Temporoparietal intracerebral hematoma. Due to rupture of AVM. There was herniation to the point the occipital lobe was damaged, that caused the loss of vision. I don't remember alot of the therapy but was told over the years what they did to help with the transision to less vision. they moved everything to the left that could be moved from the right in the home. things I would normally go for alot in the home, this way I would have to learn to turn my head if I wanted to see something but most importantly it got me used to moving my eyes around to makeup for the loss in visual feild. We are never aware it seems of how lucky or dependent we are on something untill we lose it. I wish you all the best of luck in your recovery. If all or some of the vision comes back thats great but if not just remember to ask people around you to take special care in closing cupboard doors or things they will take for granted in seeing. It's a long process to figure out. Keep in mind when you run into something and it frustrates you.... Your not alone. Good luck and have a safe Christmas holiday
Congrats on being AVM free! I also have left homonymous hemianopia. It was a result of my bleed, not the resection. It’s been almost 7 years and while my vision has not improved it hasn’t gotten worse. A good occupational therapist can help teach you to scan to the right so that you’ll get used to doing it. I was prescribed a pair of prism glasses that I use when I read. Those are fantastic but I can’t wear them all the time. They make me dizzy when walking but so helpful for reading! You’ll probably get a few bruises from bumping in to things but you’ll get better at it over time. Just be overtly cautious as you learn to compensate. The potential for injury is great! Best wishes.
Hi Trish. Very interesting about the glasses. I have never heard about them nor has any DR. / specialist told me about them.
I shy away from reading due to the frustration level I can get to because of the lack of vision. I'll be asking about them soon. Great point about being cautious while in the learning stage. Has been so long now for me that I just accept the bruised legs, even the odd face bruise because I didn't slow down to see if the fridge door was closing a little to quickly and ....Bamm !!! gets me right in the face.
Oh well things could always be worse. so happy is what I try to obtain in the moment
Thanks everyone for your suggestions and help! It is already frustrating and scary for me, too -- I am a writer, so things like reading, writing and making sure I don't drop letters or words off the page I'm working on are kind of important! Hopefully I will be able to find a neuro-opthalmologist closer than UCSCF as that is 1.5 hours away. I will go there if it's the only one I can find, of course. I really appreciate all of your comments, suggestions, etc. When I was reading this site before I had the surgery I empathized with peoples' comments about how hard it was to cope with having something wrong with you but still appearing totally normal on the outside, but I didn't really GET it. Now I GET it. It is really frustrating! I even had a friend come to visit who said how lucky I was to have 2 whole months off to "hang out." Uh yeah.