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Would you choose to improve your vision if it came at the expense of your appearance? (self.Blind)
submitted by KingWithoutClothes
Hello everyone,
TL;DR: Would you undergo a surgery if it could safe and significantly increase your vision but would make you look horrible, scary, unattractive and disfigured?
Two weeks ago I was at an eye doctor's appointment of which I have to attend many on a regular basis. At first, everything seemed like total routine but towards the end of the appointment, the doctor told me about this surgery.
Now, to understand my situation, you have to know that my condition is incurable and it's progressive. I've been dealing with this for my entire life and during the past 3-4 years I have gone almost completely blind. The vision on my left eye is gone and on my right eye I have about 3/100, or 3% vision. Unless a miracle happens, it is clear that I'm going to lose these last 3% too. Like, it's totally certain, there's no way to escape it. I've been going through a pretty deep depression for the past few years and though I'm starting to feel better, the idea of losing my tiny remaining vision terrifies me. It's so exhausting to live with this Sword of Damocles above my head every day. Every morning I wake up wondering how much time I have left... it drives me absolutely insane. Some days I wish it could just finally be over, so I don't have to deal with this constant terror anymore. On other days, I hate myself for even thinking such thoughts because my vision is so precious to me (even if it's just shapes and colors).
Now, something very unexpected has happened. This doctor told me about a surgery that could potentially give me back *more vision than I've ever had in my whole life*. There's a lot of risks involved and it would only be performed on one eye (the one that's already fully blind) but if successful, I might see even better with it than I did when I was a baby.
As you can imagine, I was totally floored. For YEARS I have been told by doctors "it's all over" and "sorry, there's nothing left we can do" and "just learn to accept this situation". And now there's this guy telling me about a last straw type of solution. WHAT??
Unfortunately, there's an enormous, gigantic catch. First of all, the surgery is very risky and I might have to deal with a lot of pain during the first year after it is performed. But that's not even the issue. The real problem is that this surgery would make me look like... uh, a monster. I'm sorry if this sounds insulting but if we're all honest for a second, I think that's an accurate description. Some of you may have heard of this surgery, it's called osteo-odonto-keratoprothesis. What it means, in simple terms, is that they take one of your teeth and surgically put it into your eye. The tooth works kind of like a bone or a socket for artificial corneas and lenses and the like. Now comes the scariest part. They take skin from the inside of your mouth and plaster it onto your eye. I won't link a photo here because it's quite graphic but you can google it if you're interested. So basically the eye is not white anymore, it's now red and fleshy. And in the middle of that red, fleshy part is a small black spot where the tooth is located. The entire thing is super impressive from a medical standpoint but it's the creepiest shit ever. I mean, this eye literally makes you look like one of the zombies from *The Walking Dead*. We're not talking about slightly odd looking eyes here, I have that too right now (as do many blind people). We're talking about making me look like those people who have a disfigured face from severe burn wounds.
I spent hours discussing the whole thing with my wife and we didn't come to a conclusion. She looked up the photos online and she was horrified. I asked her to be brutally honest and she told me that yes, if I got this surgery, she may not be able to feel attracted to me anymore. I totally get this, especially because she's a sighted person and for her the whole thing must look even more shocking than for me. She said that as much as she loves me, it would be unfair to make any blanket promises. This made me think about losing her and just the thought of it breaks my heart. She is the love of my life. Also, ever finding another woman again would be 100% impossible. My condition has already made my overall love life pretty shitty, at least before I met my wife. Looking like a monster won't exactly help. We also discussed how it will be super difficult to make any new friends. People on the street will stare at me. Not like now. Not like they stare at you when you walk with your cane. I mean STARE. When I showed the photo to my mom, her first comment was "oh jesus, eww, that is disgusting". So uh... yeah.
On the other hand, I might not only safe my vision but increase it significantly. I could ride my bicycle again, be more independent... heck, I might even be allowed to ride a small motorbike. A big dream of mine.
The whole thing seems like a Faustian bargain to me. The reward would be huge but the price I'd have to pay for it is equally huge.
So, what do you guys think? What would you do in my situation? I have this pondering this for days and I can't seem to find a solution to my dilemma.
I'm curious about all your thoughts and please forgive me for the long post.
TL;DR: Would you undergo a surgery if it could safe and significantly increase your vision but would make you look horrible, scary, unattractive and disfigured?
Two weeks ago I was at an eye doctor's appointment of which I have to attend many on a regular basis. At first, everything seemed like total routine but towards the end of the appointment, the doctor told me about this surgery.
Now, to understand my situation, you have to know that my condition is incurable and it's progressive. I've been dealing with this for my entire life and during the past 3-4 years I have gone almost completely blind. The vision on my left eye is gone and on my right eye I have about 3/100, or 3% vision. Unless a miracle happens, it is clear that I'm going to lose these last 3% too. Like, it's totally certain, there's no way to escape it. I've been going through a pretty deep depression for the past few years and though I'm starting to feel better, the idea of losing my tiny remaining vision terrifies me. It's so exhausting to live with this Sword of Damocles above my head every day. Every morning I wake up wondering how much time I have left... it drives me absolutely insane. Some days I wish it could just finally be over, so I don't have to deal with this constant terror anymore. On other days, I hate myself for even thinking such thoughts because my vision is so precious to me (even if it's just shapes and colors).
Now, something very unexpected has happened. This doctor told me about a surgery that could potentially give me back *more vision than I've ever had in my whole life*. There's a lot of risks involved and it would only be performed on one eye (the one that's already fully blind) but if successful, I might see even better with it than I did when I was a baby.
As you can imagine, I was totally floored. For YEARS I have been told by doctors "it's all over" and "sorry, there's nothing left we can do" and "just learn to accept this situation". And now there's this guy telling me about a last straw type of solution. WHAT??
Unfortunately, there's an enormous, gigantic catch. First of all, the surgery is very risky and I might have to deal with a lot of pain during the first year after it is performed. But that's not even the issue. The real problem is that this surgery would make me look like... uh, a monster. I'm sorry if this sounds insulting but if we're all honest for a second, I think that's an accurate description. Some of you may have heard of this surgery, it's called osteo-odonto-keratoprothesis. What it means, in simple terms, is that they take one of your teeth and surgically put it into your eye. The tooth works kind of like a bone or a socket for artificial corneas and lenses and the like. Now comes the scariest part. They take skin from the inside of your mouth and plaster it onto your eye. I won't link a photo here because it's quite graphic but you can google it if you're interested. So basically the eye is not white anymore, it's now red and fleshy. And in the middle of that red, fleshy part is a small black spot where the tooth is located. The entire thing is super impressive from a medical standpoint but it's the creepiest shit ever. I mean, this eye literally makes you look like one of the zombies from *The Walking Dead*. We're not talking about slightly odd looking eyes here, I have that too right now (as do many blind people). We're talking about making me look like those people who have a disfigured face from severe burn wounds.
I spent hours discussing the whole thing with my wife and we didn't come to a conclusion. She looked up the photos online and she was horrified. I asked her to be brutally honest and she told me that yes, if I got this surgery, she may not be able to feel attracted to me anymore. I totally get this, especially because she's a sighted person and for her the whole thing must look even more shocking than for me. She said that as much as she loves me, it would be unfair to make any blanket promises. This made me think about losing her and just the thought of it breaks my heart. She is the love of my life. Also, ever finding another woman again would be 100% impossible. My condition has already made my overall love life pretty shitty, at least before I met my wife. Looking like a monster won't exactly help. We also discussed how it will be super difficult to make any new friends. People on the street will stare at me. Not like now. Not like they stare at you when you walk with your cane. I mean STARE. When I showed the photo to my mom, her first comment was "oh jesus, eww, that is disgusting". So uh... yeah.
On the other hand, I might not only safe my vision but increase it significantly. I could ride my bicycle again, be more independent... heck, I might even be allowed to ride a small motorbike. A big dream of mine.
The whole thing seems like a Faustian bargain to me. The reward would be huge but the price I'd have to pay for it is equally huge.
So, what do you guys think? What would you do in my situation? I have this pondering this for days and I can't seem to find a solution to my dilemma.
I'm curious about all your thoughts and please forgive me for the long post.
cookieinaloop 8 points 4y ago
Dude, there's so much to unpack here. Let's go.
For one, I might be a weird person but I googled it and it looks... pretty damn metal. It's cool. I get why most people would frown at it but I love different eyes.
Your wife not being attracted to you is something that can be dealt with, I think. You could do couple therapy. You could make love to her with your eyes closed. There's so many things you'll be able to do as a couple if you have a better vision, I think none of you are considering that.
On the other hand, being blind isn't a death sentence. If you adapt well, it's a pretty fine thing. How well are you adapting to blindness?
For one, I might be a weird person but I googled it and it looks... pretty damn metal. It's cool. I get why most people would frown at it but I love different eyes.
Your wife not being attracted to you is something that can be dealt with, I think. You could do couple therapy. You could make love to her with your eyes closed. There's so many things you'll be able to do as a couple if you have a better vision, I think none of you are considering that.
On the other hand, being blind isn't a death sentence. If you adapt well, it's a pretty fine thing. How well are you adapting to blindness?
bscross32 8 points 4y ago
I wouldn't go near it. I don't like doctors or medical procedures though, so i'm biased, but even if I did... just nope. You'll be fine if you go blind. I mean, yes you'll have to go through some shit to get there, but that dark tunnel can be navigated, and there is light on the other side of it. It's not this death sentence that people think it is.
KingWithoutClothes [OP] 1 points 4y ago
May I ask... have you gone blind yourself? And if yes, at what age? The reason I ask this is because most people who say that "it's not that bad" are usually people who either have been born blind or have gone blind at a very young age. I'm an adult, so going blind is much tougher for me than for a child. Adults are not so flexible anymore, they struggle far more with change, especially if it's bad change. Adults are also much worse at learning new skills, like braille for example.
bscross32 1 points 4y ago
I've always been visually impaired to one extent or other. My vision is getting worse though. I had to mark up the microwave and now will have to do the same with the washer.
I wasn't trying to say it'll be easy. I don't have the experience of someone who had seminormal vision to none. What I am saying is that plenty of people have made this adjustment. My friend's ex had a friend who went through kidney failure and diabetes which caused her to go blind from fully sighted. Now she's an advocate and counselor for rehabilitation services.
SO I guess what I was trying to say is that while you definitely do have some struggles coming, you'll get through it.
I wasn't trying to say it'll be easy. I don't have the experience of someone who had seminormal vision to none. What I am saying is that plenty of people have made this adjustment. My friend's ex had a friend who went through kidney failure and diabetes which caused her to go blind from fully sighted. Now she's an advocate and counselor for rehabilitation services.
SO I guess what I was trying to say is that while you definitely do have some struggles coming, you'll get through it.
fbracing02 7 points 4y ago
I googled for some images... am I missing something because all I find are picture of people with crazy looking eyes. Nothing I'd even consider close to cause a trade off concern
cookieinaloop 5 points 4y ago
Right? I was expecting horror movie material and all I get is a cool metal looking eye.
fbracing02 2 points 4y ago
>ve
My first thought looking at it was "Thats sooo metal" lol
My first thought looking at it was "Thats sooo metal" lol
KingWithoutClothes [OP] 1 points 4y ago
I don't know man. The reactions I got from the sighted people around me were very negative and I must say I find the photos kind of shocking too. I mean, the fact that the eye gets covered up by normal skin from inside the mouth makes it look likes there's a giant tumor growing or something like that.
SpikeTheCookie 6 points 4y ago
Dear /u/KingWithoutClothes thank you so much for sharing this really personal question. I've looked up the procedure and it's just genius and strange and everything you said.
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Here's where I would be, if it were me. I truly believe medical science will leap further in the next 10 years than in the last 200. Because of that, I'd want to see what my options are down the line, options I might lose if I had this surgery.
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If you do want to consider it, please get counseling for yourself and for your marriage. As hard as it is to lose your vision (I know, personally!)... it can be made much worse if you lose your family.
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No matter what you decide, we're on your side!
​
Here's where I would be, if it were me. I truly believe medical science will leap further in the next 10 years than in the last 200. Because of that, I'd want to see what my options are down the line, options I might lose if I had this surgery.
​
If you do want to consider it, please get counseling for yourself and for your marriage. As hard as it is to lose your vision (I know, personally!)... it can be made much worse if you lose your family.
​
No matter what you decide, we're on your side!
FrankenGretchen 5 points 4y ago
First off, I've been called a monster all my life. I'm not the only one on this sub who has, either. That word is not taken lightly.
No, this procedure is not monster level.
Further, I can easily see a contact lens system fitting over that strata like prosthetic eyes fit over a subcu implant. It would remove the aesthetic detraction from the equation.
No, this procedure is not monster level.
Further, I can easily see a contact lens system fitting over that strata like prosthetic eyes fit over a subcu implant. It would remove the aesthetic detraction from the equation.
TK_Sleepytime 2 points 4y ago
Thank you for stating what I was thinking, fellow monster.
papillae 4 points 4y ago
No offense but it seems bizarre to be hung up on physical appearance, particularly as people who can not or can barely see. From pictures it seems like you get a red eye...I guess if that makes you a monster. I'd cut off one of my legs to have great vision again. A fleshy cyborg eye? maybe somewhere down the line
mutant_turtle 4 points 4y ago
I don't know what I would do in your situation. I know what procedure you're talking about and yes, it looks horrible. My bf is blind, and I can tell you, as much as I love him I'm don't think I would be too thrilled if his appearance changed in the way you described. I wouldn't stop loving him or anything, but I don't know about physical attraction. It would probably go south. At the same time, I understand that you may want to do some things you're not able to do now. I guess you have to ask yourself what is more important to you. Keep in mind, though, that you may regret acting on any of the choices currently presented to you. There's no right or wrong option.
Good luck and all the best for both of you.
Good luck and all the best for both of you.
KingWithoutClothes [OP] 3 points 4y ago
Thank you for your reply. And yes, my wife basically said the same thing that you said you would (hypothetically) feel about your boyfriend. She too told me that she wouldn't stop loving me but there was certainly a chance she wouldn't find me physically and sexually attractive anymore. What's particularly hard about all of this is the uncertainty. I really appreciate my wife's honesty but the truth is we both don't know how she would deal with it. Maybe she could learn to deal with my new appearance after a while but maybe she could not. I'm terrified of making this step and regretting it once I'm on the other side. On the other hand, there's also much I could potentially gain. So yeah... it's super difficult. Anyway, thank you again for your response!
Snessrek 3 points 4y ago
I would wait. That surgery sounds experimental as all hell, and I think in time they will find ways to improve the outcome while minimising the risk. I am a grad student (only masters but still) studying visual sciences, and going through a similar thing with losing the last of my vision myself. And honestly incredible things are being discovered every week, it won't be long before you'll be able to get some sort of stem cell-derived prosthesis, I think. So yeah, it will be harder for a while, but if you have this surgery now it will likely mean you aren't eligible or able to receive a better treatment in a few years' time.
Good luck either way dude ✌🏻
Good luck either way dude ✌🏻
highpointing 2 points 4y ago
It was pioneered in the 60's. I wouldn't say its experimental anymore.
Snessrek 1 points 3y ago
Maybe experimental isn't the right word but... arbitrary? Just because something is old doesn't mean it can't be improved on, and medicine has come a long way since the 60s. That does sound like an interesting story though!
KingWithoutClothes [OP] 1 points 4y ago
Thank you! I should read up on stem cell research (someone else in this thread also mentioned it to me) because this is bascially one of my big problems. I need a new cornea but they can't give me one because I don't have those stem cells at the edge, where the cornea could be attached to.
itsaname123456789 3 points 4y ago
I Googled the images but didn't read the details of the surgery. It looks bad, but I think I could adjust to seeing it fairly quickly. Strangers never will adjust, but most people in your life will. Staring isn't necessarily negative. People are curious about and sometimes fear the unknown. You can show them that there is nothing to fear. I wonder though, it seems like a prosthetic cover could be made? Maybe like those fashion contact lenses or something else like glass eye that fits over the socket and allows light through. I'm even be down with a pirate eyepatch with a one-way mirror coating or a monacle. It's 2019 and sci-fi and steampunk fashion is not shocking anymore. Point is, first things first, I'd do it and sort out how to make it more aesthetic. Maybe the doctors can help design the surgery so that a prosthetic eye or cover could be attached easily?
aloe_chaos_lamb 3 points 4y ago
Wow, what an intense dilemma. No wonder you are struggling with it.
I wouldn't do it. Getting back some vision would be wonderful, but it would never be worth risking my marriage. I think you're right that sadly, this could lead to broader social isolation as well. I don't think it's worth it. And what if you were to go through all this and the surgery didn't work, or didn't work as well as you hoped? Then you would be living with the fallout, without much improvement in your vision. It just sounds way too risky, with the downsides way too high.
I think what you really need is time and support to grieve the loss of your vision.
Best of luck to you.
I wouldn't do it. Getting back some vision would be wonderful, but it would never be worth risking my marriage. I think you're right that sadly, this could lead to broader social isolation as well. I don't think it's worth it. And what if you were to go through all this and the surgery didn't work, or didn't work as well as you hoped? Then you would be living with the fallout, without much improvement in your vision. It just sounds way too risky, with the downsides way too high.
I think what you really need is time and support to grieve the loss of your vision.
Best of luck to you.
Cre_13 -1 points 4y ago
It sounds way too risky? Downsides way too high?
Could you please explain what exactly is too risky?
His one eye will look bad, that's it, if he prefers hiding it, he can always wear an eye patch, or have a good prostheses eye if he changes his mind after, if prefer not to see afterall. He can have the best looking eye, or can leave that space completely empty if this is what gonna turn her on.
Could you please explain what exactly is too risky?
His one eye will look bad, that's it, if he prefers hiding it, he can always wear an eye patch, or have a good prostheses eye if he changes his mind after, if prefer not to see afterall. He can have the best looking eye, or can leave that space completely empty if this is what gonna turn her on.
Dharma_Mama 1 points 4y ago
Wearing an eye-patch would prevent him from seeing out of the eye after having it worked on and mean there was no point to the whole thing.
Cre_13 1 points 4y ago
What I meant is he will be able to see whenever he wants to, can hide whenever he feels uncomfortable about it.
Only because someone may not like how you look so giving up something can be game changer for you is the pointless thing.
Only because someone may not like how you look so giving up something can be game changer for you is the pointless thing.
aloe_chaos_lamb 1 points 4y ago
Reread the OP. He repeatedly says the surgery is very risky, i.e., there is no guarantee it will work and there may be serious complications.
Cre_13 -1 points 4y ago
Yes I read, it's only his perception. The only risk is his one eye will look bad. So if he would describe this as a disaster, I don't think it's wise to just write "oh, it's a disaster". No it's not.
ColonelKepler 3 points 4y ago
I'm so sorry. I wish I could say something that would help, but I don't feel that I can. I hope what I say next doesn't make you feel even more down; if it does, I sincerely apologize.
Firstly, I'm totally blind, so I cannot understand specifically what it feels like to lose your vision, or the hope of having it restored. As I've been blind basically from birth, my brain lacks the information to make sense of the visual input, so it's pretty much an impossibility. I do, however, have a progressive hearing loss, which is something that also comes with my condition. I understand completely the feeling that a vital sense is fading, and that it's eventually going to go away. Sometimes, the not knowing when is almost worse. I could, at some point, get cochlear implants, which would hopefully restore my hearing to a more "usable" level, meaning, basically, being able to hear speech more clearly. Sometimes it seems to me that that's all anyone cares about. One of my fears with getting implants is that it will severely ruin, or even destroy, my perception of music. It's one of the few things that can make me genuinely happy, and the thought of losing it (not to mention everything else involved, like several weeks without sound before switch-on, which is just terrifying) brings me to the point of total despair sometimes. I guess my point in saying all this is that I understand the feeling, and you're not alone in it, for what that's worth.
If some surgery existed that would allow me to restore my hearing (as said, vision isn't an option for me) and would have the same effect? I honestly can't say. I get having difficulty making friends; I think I come across as fairly odd and aloof in person, and I find social interaction exhausting, so I have few good ones. Reduce my chances even further? I think I'd lean toward no, honestly. I don't want to be lonely all my life, if I can help it. I think, if I had a loving relationship, I'd opt not to have the surgery. Losing my hearing is terrifying, but if I had someone by my side who I knew loved and would stick by me, I'd want to do everything I could to make them happy. If, as in your case, my hypothetical SO said she might not be able to find me attractive after it, then my answer would be clear. Of course, I'm not you, and the decision is yours. I guess I'm just sort of rambling at this point. I wish you all the best, and I hope you found something in here helpful. It's not easy what you're going through, and I think you're very strong for facing it. I'm sure you'll make the best decision, either way.
Firstly, I'm totally blind, so I cannot understand specifically what it feels like to lose your vision, or the hope of having it restored. As I've been blind basically from birth, my brain lacks the information to make sense of the visual input, so it's pretty much an impossibility. I do, however, have a progressive hearing loss, which is something that also comes with my condition. I understand completely the feeling that a vital sense is fading, and that it's eventually going to go away. Sometimes, the not knowing when is almost worse. I could, at some point, get cochlear implants, which would hopefully restore my hearing to a more "usable" level, meaning, basically, being able to hear speech more clearly. Sometimes it seems to me that that's all anyone cares about. One of my fears with getting implants is that it will severely ruin, or even destroy, my perception of music. It's one of the few things that can make me genuinely happy, and the thought of losing it (not to mention everything else involved, like several weeks without sound before switch-on, which is just terrifying) brings me to the point of total despair sometimes. I guess my point in saying all this is that I understand the feeling, and you're not alone in it, for what that's worth.
If some surgery existed that would allow me to restore my hearing (as said, vision isn't an option for me) and would have the same effect? I honestly can't say. I get having difficulty making friends; I think I come across as fairly odd and aloof in person, and I find social interaction exhausting, so I have few good ones. Reduce my chances even further? I think I'd lean toward no, honestly. I don't want to be lonely all my life, if I can help it. I think, if I had a loving relationship, I'd opt not to have the surgery. Losing my hearing is terrifying, but if I had someone by my side who I knew loved and would stick by me, I'd want to do everything I could to make them happy. If, as in your case, my hypothetical SO said she might not be able to find me attractive after it, then my answer would be clear. Of course, I'm not you, and the decision is yours. I guess I'm just sort of rambling at this point. I wish you all the best, and I hope you found something in here helpful. It's not easy what you're going through, and I think you're very strong for facing it. I'm sure you'll make the best decision, either way.
KingWithoutClothes [OP] 2 points 4y ago
Thank you very much. I really appreciate your detailed answer and reading about your progressive hearing loss. This is humbling to me because it makes me appreciate what I have (my functioning hearing) even more than I do already. However, I also think it puts you in a somewhat similar situation because you need to make a decision between music or voices, both of which is extremely important to you. I don't mind the rambling and I certainly didn't expect some kind of solution from anyone here. People have different opinions and this is a super difficult dilemma for me, so I wanted to know how other people would think and feel about it. So, again, thank you very much :)
Fatlazyceliac 2 points 4y ago
It sounds like you have a lot of concerns about your current level of vision that may or may not be true. I have many blind friends, my work is in the field as well, and I’m wondering if you’ve had any Orientation & Mobility training? Knowing that you can navigate the world being completely blind (and date, and everything else) might make you happier about your situation overall. And then you can think about surgery.
KingWithoutClothes [OP] 1 points 4y ago
Yes, I have had O&M training. But honestly, I still feel pretty lost in this new world. I mean, I've lost all of my friends during the past few years. I'm in therapy because I feel pretty depressed. I'm mostly sitting at home because going outside and doing stuff is exhausting to me. It's not that I can't do it; I've become very independent with my white cane, I just find it exhausting that I always have to search everything, ask strangers for help everywhere etc.
One of the problems I've noticed is that sighted people have very little patience with blind people. They will act nice and kind to you because they want to be polite but they don't actually want to be your friend because that's just too exhausting to them (or at least they imagine it to be very exhausting). This is all very troubling to me. So, while O&M is great, there are these emotional issues that it can't help me with. Like the fact that I'm so scared I may never be able to see my children (this has always been one of my biggest dreams). In the end, this is an issue I someone need to find a solution to myself.
But anyway, thank you, I still appreciate your input.
One of the problems I've noticed is that sighted people have very little patience with blind people. They will act nice and kind to you because they want to be polite but they don't actually want to be your friend because that's just too exhausting to them (or at least they imagine it to be very exhausting). This is all very troubling to me. So, while O&M is great, there are these emotional issues that it can't help me with. Like the fact that I'm so scared I may never be able to see my children (this has always been one of my biggest dreams). In the end, this is an issue I someone need to find a solution to myself.
But anyway, thank you, I still appreciate your input.
LucasConnor97 1 points 3y ago
Yes. I’m 20/200 in my left eye, 20/300 in my right. Only distance is affected, so as you might imagine it’s frustrating, because I know both what I’m missing visually, while simultaneously not having any frame of reference since it’s from birth
[deleted] 1 points 4y ago
[deleted]
OutWestTexas 1 points 4y ago
I have an autoimmune eye issue as well. Advances in autoimmune diseases have been slow compared to other diseases but things are still way better. For example, Lupus used to be a death sentence (until 1980’s). Now it is “manageable”. I am old enough to remember when there was no treatment for cataracts. I am no expert, but I think better treatment options eventually.
ravenshadow2013 1 points 4y ago
after googling the procedure I have to say that I've seen worse and this is going to help you see better? I dont see a serious trade off, besides if you are that self conscious about it then might I recommend a dark pair of sunglasses
KingWithoutClothes [OP] 1 points 4y ago
That's what my doctor said but I mean... I can't wear sunglasses at home all the time and also when I go to a restaurant with a friend for example, or say at work in an office, I can't just be wearing dark sunglasses. It would be weird.
ravenshadow2013 1 points 4y ago
I wear sunglasses everywhere I go during the day, at night not so much. I think that if you are given the opportunity to have better sight to hell with what other people think of you or what your eye might look like. you have a chance to see better, my only hope for better vision is either a cybernetic implant or they develop optic nerv transplants, so please if there is a chance for you take it
theWriteAmy 1 points 4y ago
I was very curious what this was and scared to look it up because I was afraid of what it would look like, based on your description. While researching it, I stumbled across a page with pictures of each stage. I peeked at the final picture like it was a horror movie.
It was not a horror movie.
In the end, it looks like a layer of skin had grown over your eyeball and they cut a hole into it and put in a cylindrical thing so you can see. I can imagine it scaring some children because they've never seen such a thing but it was *not* as bad as you described. Yeah, it looks different, it bulges out further than other eyes, but it's not monstrous.
That said, I wouldn't recommend anyone to do it. The 10-year anatomical survival rate is merely 66%. 10-year functional survival rate is 38% and 2-year functional survival is 63%!! I don't know what the risks are for this procedure but the results are not worth it.
It was not a horror movie.
In the end, it looks like a layer of skin had grown over your eyeball and they cut a hole into it and put in a cylindrical thing so you can see. I can imagine it scaring some children because they've never seen such a thing but it was *not* as bad as you described. Yeah, it looks different, it bulges out further than other eyes, but it's not monstrous.
That said, I wouldn't recommend anyone to do it. The 10-year anatomical survival rate is merely 66%. 10-year functional survival rate is 38% and 2-year functional survival is 63%!! I don't know what the risks are for this procedure but the results are not worth it.
KingWithoutClothes [OP] 1 points 4y ago
Thank you for the numbers. I didn't know about them. As for your impression... I can't decide what I should think of this. Like I said, I really appreciate all the replies here. But I'm also confused by how many people in this thread seem to say "it's not that bad" while all the sighted people I've shown it to were shocked and disgusted. I wonder if people in this sub are maybe just way more tolerant than the average person.
C1an0t 1 points 4y ago
I would do the surgery in a heart beat
oncenightvaler 1 points 4y ago
The one method I have heard talked about in improving my vision only comes short term and it is not known if remission was possible or how likely remission is. Therefore I chose to remain blind simply because I am used to it and I would have to relearn several things including basics like what are colours how to write, what everything looks like.
OutWestTexas 1 points 4y ago
There are much more realistic advances coming with stem cell therapy. I’d wait.
KingWithoutClothes [OP] 1 points 4y ago
Thank you for your input. I don't wanna bore you with the medical details but one big problem for me is that I don't have those stem cells at the edges of cornea (it's called limbal stem cell deficiency I think). When people need a new cornea, be it artificial or donor, which is the case for me, those corneas usually get attached to those limbal stem cells. Since I don't have those stem cells, there's no "hook" to attach an artificial cornea. About 20 years ago when I was a child, they tried to take stem cells from my dad and transplant them into my eye. The idea was that those stem cells would then grow and finally they could work as a hook. Sadly, my body rejected my dad's stem cells.
I'm not asking for medical advice or anything but do you know anything about the current stem cell research? Do you think this issue could be solved (especially the one related to the immune system overreacting and rejecting everything)? I'd be very interested to hear.
I'm not asking for medical advice or anything but do you know anything about the current stem cell research? Do you think this issue could be solved (especially the one related to the immune system overreacting and rejecting everything)? I'd be very interested to hear.
noeinan 1 points 4y ago
Is there a possibility of making a cosmetic "shell" that goes over the mouth skin, with a hole in the middle for the lense? It could be white and have a false iris around the "pupil"?
It might be uncomfortable to pop it in an out, depending on how sensitive the new skin is. But I can't imagine it would be worse than contacts? And maybe they could make it from a soft material like soft lenses?
It might be uncomfortable to pop it in an out, depending on how sensitive the new skin is. But I can't imagine it would be worse than contacts? And maybe they could make it from a soft material like soft lenses?
KingWithoutClothes [OP] 2 points 4y ago
Mmmh this is an interesting idea that I haven't thought of yet. The doctor that told me about this surgery referred me to a specialist who specializes on this particular surgery. I haven't had my appointment with that specialist yet but I'll definitely ask him about this. Thank you :).
munchhie 1 points 4y ago
I'm really sorry you're being faced with this dilemma.
I was born with my condition, so I've never known any better. I'm also never going to lose my vision completely, so take my perspective with a grain of salt, but I don't think you should do it. I am one of the most outgoing people I know, and even I don't think I could handle it. I've been made fun of for my appearance and especially my nystagmus, and I've been told that I'm scary looking, but I've never really let it bother me.
I don't know if I could have the same attitude if I got a procedure that made my own mother think I was disgusting and the love of my life admitted that maybe they wouldn't be attracted to me anymore, though.
I don't think you should do it. Technology is always improving, and maybe one day there will be something else for you.
I was born with my condition, so I've never known any better. I'm also never going to lose my vision completely, so take my perspective with a grain of salt, but I don't think you should do it. I am one of the most outgoing people I know, and even I don't think I could handle it. I've been made fun of for my appearance and especially my nystagmus, and I've been told that I'm scary looking, but I've never really let it bother me.
I don't know if I could have the same attitude if I got a procedure that made my own mother think I was disgusting and the love of my life admitted that maybe they wouldn't be attracted to me anymore, though.
I don't think you should do it. Technology is always improving, and maybe one day there will be something else for you.
JuiceZee 1 points 4y ago
I think you’re overstating how bad it looks. It’s different but gore is not the right word at all. It didn’t make me feel disgusted at all. It’s just different. I don’t see the problem. Doesn’t look like gore and even if you don’t want people to see it, wear an eyepatch in public. Then you can use your eye still by yourself to watch tv or read or whatever. Honestly an eyepatch would solve all your problems but I really don’t think it’s that big of a deal appearance wise. I would never leave a so over that.
[deleted] 1 points 4y ago
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PungentMushrooms 1 points 4y ago
What's the name of this procedure? How does this even work?
If the disfigurement is really as bad as you say it is, I would stay far away from it. Like others have said already, you can live a happy life blind. It's really not so bad once you get used to it
If the disfigurement is really as bad as you say it is, I would stay far away from it. Like others have said already, you can live a happy life blind. It's really not so bad once you get used to it
fairlyfairies 1 points 4y ago
I have an serioud eye disease but haven't lost vision yet with treatment. But tbh if I hypothetically had to pick between this surgery as my only treatment and loosing my vision, I would choose loosing my vision. And I'm currently fully sighted. I'm sorry you have to make this decision
Cre_13 -3 points 4y ago
I'm a sighted person, works in Advertising, so it's my job to decide what would visually impress people hence they would be happy spending their money for things they probably do not even need. Now I said this, I hated myself for a second, but bluntly speaking here and this is actually some sort of entertainment since everybody are aware tv commercials and such are fiction, we don't lie (at least in my particular role).
I also did volunteer work at a blind school for a few months, I would really love to keep doing it but found a good job in another country so unfortunately couldn't keep doing it. But kept thinking and researching as wanted to know more, being aware everybody can go blind or have other disabilities through diseases, accidents, genetics whatever. It's life is going on and we humans just adopt it, it's our no1 strength.
I'm also married, can relate your feelings and some of the people from blind school were flirting with people, getting married etc. Which is great.
The reason I've written this so long is because my answer is so short; you must do it. I witnessed the people in vulnerable situations like yours, naturally simply can not decide clearly. It's so natural I can't even think otherwise. Craving for approval from the people around them but because they're relatives, they feel the stress too so they can't decide or express themselves neither. Do it and don't even worry about your wife. You will either keep your wife or will find someone else better. It's your life, if you have a chance to fulfill your needs and she's worried about your one eye will look odd ans can't like you that way, trust me you will never ever ever regret if she leaves you because of this! You'll think it is a blessing to you.
I also did volunteer work at a blind school for a few months, I would really love to keep doing it but found a good job in another country so unfortunately couldn't keep doing it. But kept thinking and researching as wanted to know more, being aware everybody can go blind or have other disabilities through diseases, accidents, genetics whatever. It's life is going on and we humans just adopt it, it's our no1 strength.
I'm also married, can relate your feelings and some of the people from blind school were flirting with people, getting married etc. Which is great.
The reason I've written this so long is because my answer is so short; you must do it. I witnessed the people in vulnerable situations like yours, naturally simply can not decide clearly. It's so natural I can't even think otherwise. Craving for approval from the people around them but because they're relatives, they feel the stress too so they can't decide or express themselves neither. Do it and don't even worry about your wife. You will either keep your wife or will find someone else better. It's your life, if you have a chance to fulfill your needs and she's worried about your one eye will look odd ans can't like you that way, trust me you will never ever ever regret if she leaves you because of this! You'll think it is a blessing to you.
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