Blind and Visually Impaired Community
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Just want to say thanks to everyone here (self.Blind)
submitted by Neil_DeSpace_Cosmos
For most of my life I dealt with some visual impairment due to being functionally monocular. (20/400 OS due to juvenile glaucoma) but owing to the decent acuity and insignificant visual field loss in my good eye, I've enjoyed what I considered to be functionally normal vision (20/40 OD). I say this, having no frame of reference to what good binocular vision is like and having been able to do the vast majority of things the way regular sighted people do them.
So I was in no way prepared for the consequences of the sudden retinal detachment I suffered in my good eye 4 months ago. I had vitrectomy surgery to repair it but after 4 months of recovery I'm left with 20/200 acuity, and other severe defects, distortion, scotomas etc. Having no OS visual field to fall back on, this has been an unprecedented amount of vision loss for me, and given that it struck during the height of the pandemic I've been really struggling to adjust, mostly alone and with reduced access to supports.
It's been really hard. I've been feeling depressed and hopeless and have struggled to make peace with what's happened, owing to the fact the the surgeons suggested a better outcome at the start of this ordeal. Diiscovering this subreddit and reading through the posts you all have made about your experiences and the things you are able to do, even with less vision than I now have, has been the first thing to help me.
Through your posts here, you guys have shown me how to imagine a future where I adjust to this and still pursue the things I care about in life. I can't tell you how grateful I am that this community is here, accessible to people like me even during a time of unprecedent isolation. I finally feel like I can move forward and get back to living.
Thank you so much
So I was in no way prepared for the consequences of the sudden retinal detachment I suffered in my good eye 4 months ago. I had vitrectomy surgery to repair it but after 4 months of recovery I'm left with 20/200 acuity, and other severe defects, distortion, scotomas etc. Having no OS visual field to fall back on, this has been an unprecedented amount of vision loss for me, and given that it struck during the height of the pandemic I've been really struggling to adjust, mostly alone and with reduced access to supports.
It's been really hard. I've been feeling depressed and hopeless and have struggled to make peace with what's happened, owing to the fact the the surgeons suggested a better outcome at the start of this ordeal. Diiscovering this subreddit and reading through the posts you all have made about your experiences and the things you are able to do, even with less vision than I now have, has been the first thing to help me.
Through your posts here, you guys have shown me how to imagine a future where I adjust to this and still pursue the things I care about in life. I can't tell you how grateful I am that this community is here, accessible to people like me even during a time of unprecedent isolation. I finally feel like I can move forward and get back to living.
Thank you so much
obex_1_kenobex 6 points 2y ago
I'm sorry to hear about the retinal detachment in your good eye.
I am a retinal surgeon and have many patients who slowly regained more acuity over time (months to years) as photoreceptors recover and the brain adapts.
Retinal detachments are all unique and it's impossible to predict what's going to happen but I wanted to let you know that many people do note slow improvement over time.
I am a retinal surgeon and have many patients who slowly regained more acuity over time (months to years) as photoreceptors recover and the brain adapts.
Retinal detachments are all unique and it's impossible to predict what's going to happen but I wanted to let you know that many people do note slow improvement over time.
Neil_DeSpace_Cosmos [OP] 3 points 2y ago
Thanks for telling me that. I am looking forward to perhaps regaining some acuity over a long period of time. I know that my eye history really complicates things though.
Could you tell me, have you ever had a patient with a macula-off detachment that initially reported central vision metamorphopsia/micropsia, and faded/washed out colors? These two symptoms more than anything else are bumming me out and I understand they are known and common results of a macula-off detachment. I'm wondering is it realistic to hope these two symptoms in particular will ever resolve?
I asked my surgeon about edema or pucker, he says he doesn't see any.
Could you tell me, have you ever had a patient with a macula-off detachment that initially reported central vision metamorphopsia/micropsia, and faded/washed out colors? These two symptoms more than anything else are bumming me out and I understand they are known and common results of a macula-off detachment. I'm wondering is it realistic to hope these two symptoms in particular will ever resolve?
I asked my surgeon about edema or pucker, he says he doesn't see any.
obex_1_kenobex 2 points 2y ago
The metamorphopsia and color change is pretty common after a mac off detachment unfortunately. But i have had many patients tell me that it improved over time [time like 3 or 4 years] (and I saw no change in exam or images i took to try and figure out why). I think it must be photoreceptor recovery and neuroplasticity working together because I don't see any anatomical changes in these cases.
I haven't had many patients with juvenile glaucoma and mac off retinal detachment, but have had people with primary open angle glaucoma (who didn't have any nerve damage until they were older). The nerve damage and the retina damage are unfortunately a "double whammy" but I'd say most people with a mac off detachment notice continued improvement over time.
I haven't had many patients with juvenile glaucoma and mac off retinal detachment, but have had people with primary open angle glaucoma (who didn't have any nerve damage until they were older). The nerve damage and the retina damage are unfortunately a "double whammy" but I'd say most people with a mac off detachment notice continued improvement over time.
Neil_DeSpace_Cosmos [OP] 2 points 2y ago
I was really unlucky, I went to the optho when I saw early signs of PVD (floaters) because I was scared it would lead to a RD, thought I was being super proactive. Got an exam, was told the vitreous is detaching but not retinal tears. Within a day after being told that, retina started to tear and within an hour and a half or so the macula was off. I think the aggravating factors were cataract surgery on my newborn eyes, aphakia, myopia and elevated IOP making it kind of a perfect storm for an eventual detachment.Most doctors remark they don't have patients like me lol.
My surgeon said he observed nerve damage but I am hoping that because it wasn't advanced enough to affect my visual field much and still allowed for 20/40 vision before the detachment, that it won't hamper the potential for improvement too much.
My surgeon said he observed nerve damage but I am hoping that because it wasn't advanced enough to affect my visual field much and still allowed for 20/40 vision before the detachment, that it won't hamper the potential for improvement too much.
obex_1_kenobex 2 points 2y ago
Yeah aphakia from pediatric cataract surgery makes retinal detachment even more complex than it already is. :/. I'm sorry this is all happening to you, but I'm glad you got it fixed as soon as you could. I wish for you healing and happiness in the coming months and years.
siriuslylupin6 1 points 2y ago
Sorry to hear I’ve returned to this sub recently and just saw your post.
If you want any help and guidance I am happy to help I am a blind person who’s done a lot in her life, and has had a very full one. So just ask if you need help blindness even total blindness is not the end of the world. I’ve been very functional and have been blind nearly all of my life.
If you want any help and guidance I am happy to help I am a blind person who’s done a lot in her life, and has had a very full one. So just ask if you need help blindness even total blindness is not the end of the world. I’ve been very functional and have been blind nearly all of my life.
bradley22 1 points 2y ago
You’re welcome :)
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