Blind and Visually Impaired Community
↑
13
↓
Does anyone here know whether there are any treatments for scarring behind retinas which has been there since birth and caused almost total blindness? (self.Blind)
submitted by Unlucky-Water
Hello. I was bort blind due to scarring behind my retinas, which the doctors think was caused by my mother coming into contact with rubella while she was pregnant. I have just recently been diagnosed with keratoconus, and it may be severe enough to need surgery. Generally the surgery would be a cornea transplant, but I'm not sure if the risks and complications would be worth it since it wouldn't be giving me any vission. I would almost rather go with a full eye removal since there are less risks involved, which my doctor agreed with, but he says I should think about it first because medical science may eventually be advanced enough to fix the scarring behind my retinas and give me some vision. My parents were told when I was little that there was no way my vision could ever be fixed, but that was thirty years ago. I'm coming here to see if anyone on this subreddit has any info about scarring behind retinas and treatment options or lack thereof. I'm fine with having my eye removed, especially to get rid of this pain and discomfort, but I don't know if I should go with the cornea transplant instead in case there are or have been any break-throughs for my eye condition. Thank you for reading this, I hope you're having a good day.
macadamia_owl 5 points 2y ago
For now I haven't heard of a way to regenerate, regrow or repair retina. It's extremely complex part of the eye its multiple layery are thinner as one hair strain and they are all connected complexly to optic nerve. I too I'm waiting 15 yrs for a way to repaitment due to ROP scarring in one eye I can still see a little bit but other one went fully blind 15 yrs ago. I had horrible pain but found help and I'm glad I didn't removed it, its smaller and total mess inside but its hope for future that maybe they can use sclera and optic nerve as base to build a optic bionic eye? There are some trials with stem cells but they're still very unpredictable theres no way to control in what they will change to they can change into anything bone or cancer not good thing in this area. Seek way for pain control I tried 5 countries and found pain relief after such agony!
Unlucky-Water [OP] 1 points 2y ago
Thank you for your answer. I'm glad you were able to keep your eye, and I hope the future holds a way for you to regain vision. Yeah, I'm working on finding a way to manage the pain so that no surgery will be necessary.
DrillInstructorJan 3 points 2y ago
I'm blind due to retina damage and I would be horrified at the idea of losing my eyes, if only for cosmetic reasons. I was told that it was possible I'd get some sort of atrophy but that has never happened and I am very thankful for that. People say I have nice eyes!
In future if there ever was a fix, which I would still take in a heartbeat, it can only be a good idea to have as much of the natural structure still be there, from the eyeball which you can point in different directions right down to where the nerve endings are and all that stuff. I can't imagine ever having an eye removed unless there were incredibly powerful medical reasons to do that and there was absolutely no other option. God no.
In future if there ever was a fix, which I would still take in a heartbeat, it can only be a good idea to have as much of the natural structure still be there, from the eyeball which you can point in different directions right down to where the nerve endings are and all that stuff. I can't imagine ever having an eye removed unless there were incredibly powerful medical reasons to do that and there was absolutely no other option. God no.
Unlucky-Water [OP] 1 points 2y ago
I'm glad you haven't had to deal with any atrophy.
Your response is much more understandable than mine, I think I'm probably in the minority with how little I care about keeping it, although it would suck to lose it only for there to be a fix in the future. I do hope it won't come to any surgeries, but the expense and risks of a cornea transplant just don't seem worth it for me personally.
Your response is much more understandable than mine, I think I'm probably in the minority with how little I care about keeping it, although it would suck to lose it only for there to be a fix in the future. I do hope it won't come to any surgeries, but the expense and risks of a cornea transplant just don't seem worth it for me personally.
msimmons024 2 points 2y ago
I have a different eye condition, but due to it, I had excessive scar tissue build up on my retina. I had many eye surgeries, but I am still totally blind. I had to get most of the surgeries done in Michigan at Beaumont hospital with Dr. Capone. I have no idea what they would be able to do for your condition, but they were the best place for treating my disease, FEVR.
Unlucky-Water [OP] 1 points 2y ago
I'm sorry you had to go through multiple surgeries which didn't help your vision.
I'm not sure what my eye condition is, so I'm not sure where would be best for treating it, but I am going to look into dr. Capone.
I'm not sure what my eye condition is, so I'm not sure where would be best for treating it, but I am going to look into dr. Capone.
codeplaysleep 2 points 2y ago
My opinion is that there isn't going to be a treatment for this type of significant retina damage that's reasonably affective and available in my lifetime (I'm in my mid 40's). Some types of retina diseases may have more treatment options come available, but a retina that's significantly scarred is probably too far gone.
If there is a treatment one day, it seems like it will more likely come in the form of an implant, not repairs to the actual retina - so I don't think having a prosthetic at that point would be a prohibiting factor.
I started developing pain in my left eye when I was 16 and had it removed when I was 17. I've never regretted that decision.
Who knows what's going to happen in another 30 years, but in 30 years, you'll be 60 and will have lived with and adapted to your vision loss for decades at that point. Restoring your vision at that age just might not matter to you all that much, really. Personally, at that point, I'm not sure my brain would even be able to cope with the overload of new visual stimuli.
It's OK to have hope, but it's another entirely to suffer for years when that hope is slim. I'd rather be comfortable than live in pain because of "may eventually."
If there is a treatment one day, it seems like it will more likely come in the form of an implant, not repairs to the actual retina - so I don't think having a prosthetic at that point would be a prohibiting factor.
I started developing pain in my left eye when I was 16 and had it removed when I was 17. I've never regretted that decision.
Who knows what's going to happen in another 30 years, but in 30 years, you'll be 60 and will have lived with and adapted to your vision loss for decades at that point. Restoring your vision at that age just might not matter to you all that much, really. Personally, at that point, I'm not sure my brain would even be able to cope with the overload of new visual stimuli.
It's OK to have hope, but it's another entirely to suffer for years when that hope is slim. I'd rather be comfortable than live in pain because of "may eventually."
Unlucky-Water [OP] 2 points 2y ago
Thank you for your thoughts and info on this.
I'm glad that you've never regreted having your eye removed. That is also comforting, because I agree with you, I'd rather be comfortable than holding out for a slim possibility. There are a couple of things in life I would love to have vision for, but not having vision isn't keeping me from those things, just pushing me to find different methods and resources. I agree that the overload might be a bit much. I can't even fathom seeing, so I don't feel like I'm missing out.
I'm glad that you've never regreted having your eye removed. That is also comforting, because I agree with you, I'd rather be comfortable than holding out for a slim possibility. There are a couple of things in life I would love to have vision for, but not having vision isn't keeping me from those things, just pushing me to find different methods and resources. I agree that the overload might be a bit much. I can't even fathom seeing, so I don't feel like I'm missing out.
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc • HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.