Benny boy Posted October 21, 2005 Share Posted October 21, 2005 Once again I'm going to apologize for posting another question without having posted responses to other posts. I know it's selfish, but I'm also slow to the draw and my answers to posts would inevitably come after so many solid responses, but know that I read many and pray for everyone who writes to the board. Also everyone here has my gratitude for reading any post and praying for anyone they read about. One thing my signature does not state is that my mom's brain mets are partially located on the optic nerves. She went blind in her right eye a couple of months ago, in a rapid progression of sight-loss. In the past few days she's experienced the same type of progression and the onc just revealed to her that she has abberations on the nerve to her left eye, even though he's known for a month. (he didn't say anything as per my mom's request, as she does not want to know anything bad unless it was going to become obvious). She will probably be blind by the time I wake up tomorrow morning, and I was just wondering if anyone here has experience with this. I know that optic nerve mets are much less common, and therefore I'd think many of you would not have knowledge of this problem, but if you have, I was wondering what your story has been so far. What's it like to take care of a pre-hospice (she refuses doctors suggestions to quit treatment) blind, patient? I know the question is vague, but if the there is anyone here who knows what path my mother and our family will travel, the advice would be invaluable. Thank you so much everybody, for being who you are, reading, writing, praying, and consoling, friends. This is truly a wonderful place, Thanks again, Ben Quote Link to comment Share on other sites More sharing options...
bunny Posted October 21, 2005 Share Posted October 21, 2005 I hate it when I say this: but I have no real help for you. I just wanted to tell you that you can be as 'selfish' as you need to be here, there are plenty of us to go around and we'll give you whatever we can. just don't feel like you have to "give to get" because you don't. what a horrible set of circumstances you have to deal with right now. I wish to god I could offer some constructive help, but I have no experience with it. I can tell you that my father lost the sight in one eye overnight, after an optic neuropathy following open-heart surgery, and waiting for the other shoe to drop with something as massive as blindness was hard to learn to live with. it's a totally situation, though, as his underlying health issue was remedied completely. I admire your mother's fighting spirit. just make sure you get all the support you can for yourself, hon. prayers and warm thoughts are with you now, xoxo amie PS. tell her I am a die hard Yankee fan, too, rooting for the CWS also...but mainly because Clemens is a traitor Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 21, 2005 Share Posted October 21, 2005 Oh crap. this is not a very good thing! I cannot remember anyone who had mets to the optic nerve who is a member of the board here. No help from here. All I can say is thank God for sports radios and visual memories for your mom. Hope her Sox do well enough to brighten a few days for her. Cindi o'h Quote Link to comment Share on other sites More sharing options...
LynneH Posted October 21, 2005 Share Posted October 21, 2005 Hello Ben, I was hoping I could help too but although my husband Jim's experience was similar, it was not the same. His tumor was either pressing on the optic nerve or the swelling was impacting it (don't recall which). This resulted in double and triple vision in one eye and I think the other eye was also affected some. For the double vision, we started patching the bad eye so he could at least believe he only had one spoon and one bowl (he didn't believe me sometimes!). Something we did might help you. I always made sure I put his pills into his hands and made sure he had a good grip on them to get them into his mouth (then watched to make sure they went there because he wasn't used to having compromised vision). Really a crummy situation for you but I admire your Mom's spirit. Perhaps one of the Blind institutes can provide you with some basic info. Take care, Lynne Quote Link to comment Share on other sites More sharing options...
Ry Posted October 21, 2005 Share Posted October 21, 2005 You should have a Center for the Blind near you that could help with this. They can send someone out to go over things and how to help her get around, etc. Basic things such as telling her where each item is located on her plate (potatoes at two o'clock), not moving furniture, all those things those of us with sight don't think about. Good luck. Quote Link to comment Share on other sites More sharing options...
Benny boy Posted October 21, 2005 Author Share Posted October 21, 2005 Thanks a lot everyone, I just thought I'd take a shot in the dark, knowing that I couldn't find any info on this on the internet. But the tips on how to manage are really great, so thanks all. Ben Quote Link to comment Share on other sites More sharing options...
mitzu Posted October 21, 2005 Share Posted October 21, 2005 My dad also has numerous mets to the brain, and a few days ago, he stopped seeing out of his right eye. I think it's the tumors pressing on the optic nerve, I'm praying he won't go blind altogether. It sucks. Good luck with your mom, I hope she can cope with this. Quote Link to comment Share on other sites More sharing options...
karenl Posted October 22, 2005 Share Posted October 22, 2005 Ben Nothing useful to offer, just wanted to send my good wishes your way.....sorry this is happening. Karen Quote Link to comment Share on other sites More sharing options...
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