Blind and Visually Impaired Community
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I have to consider removing my eye. Looking for someone who can relate. (self.Blind)
submitted by supravita
My eye journey is long and complicated. I was born with one cataract and have had glaucoma, iris, lens, and cornea surgeries in the same eye. Due to my cornea disintegrating, I have cloudy vision and am painfully photosensitive. My first cornea transplant lasted six months and my most recent led to complications and was destroyed due to emergency surgery. I will need surgeries at least once every five years for the rest of my life. The pain and cloudiness make me dizzy and unable to focus on work. The photosensitivity keeps me in the dark all day wearing sunglasses until 9pm and causes a lot of the misery I’ve been enduring the last three years. I’ve had to put “normal” life on hold while I wait for my next surgeries to occur and heal.
My uncle went through a similar situation due to a traumatic accident and he endured ~20 surgeries before he chose to remove his eye. He wears an amazing prosthetic eye and can even ski black diamonds with one eye. At some point the quality of life is so diminished by constant eye pain and surgery that it’s worth it to remove the eye.
I am in my mid twenties and want children someday, but fear that I will not have a break from surgeries to live a life I’ve dreamed of and worked towards. I fear that I will have to make a decision to remove my eye sooner rather than later. I’m lucky that there is still some sight in the eye, but the constant cloudiness and pain makes it hard to enjoy that.
Has anyone been in a position to decide whether to keep or remove an eye?
My uncle went through a similar situation due to a traumatic accident and he endured ~20 surgeries before he chose to remove his eye. He wears an amazing prosthetic eye and can even ski black diamonds with one eye. At some point the quality of life is so diminished by constant eye pain and surgery that it’s worth it to remove the eye.
I am in my mid twenties and want children someday, but fear that I will not have a break from surgeries to live a life I’ve dreamed of and worked towards. I fear that I will have to make a decision to remove my eye sooner rather than later. I’m lucky that there is still some sight in the eye, but the constant cloudiness and pain makes it hard to enjoy that.
Has anyone been in a position to decide whether to keep or remove an eye?
gunfart 20 points 1y ago
Yes, I was in that same boat about a month and a half ago. All of the pain, headaches, and sleepless nights is totally not worth it. Getting my eye removed was probably the best decision I have made in terms of quality of life. Sadly, it was also the only eye that had vision left in it so we’re moving it left me completely blind, however I was somewhat mentally prepared.
supravita [OP] 5 points 1y ago
Wow, I cannot image the bravery it took to make that final decision. Thank you for talking about it. Did you have to “fight” the doctors on the decision?
gunfart 12 points 1y ago
Not at all. I had sort of made plans to have it removed because I had been experiencing pain since Christmas day, but due to the eyeball deteriorating much faster than expected, I went ahead and made the decision to have it pulled out. Much earlier than intended Also, from what I was told, my eyeball looked really really bad. Like, a small black tube protruding out of the white surface sort of bad. It also went through the process of looking all Zombiefied and bloodshot, as well as having the globe rupture twice which was incredibly painful. I would absolutely make the choice of having it removed again if I was ever in that situation again. Plus, I can totally rock a fucking sweet terminator eyeball now
supravita [OP] 1 points 1y ago
The globe ruptured twice? That must have felt excruciatingly painful. I’m so glad you’re stable now and rocking your new look!
yourmommaisaunicorn 8 points 1y ago
Know a person who had both eyes removed. At the end of the day the pain for them did not outweigh what minimal sight their eyes provided.
Glass eyes have come a long way and I did not know they had glass eyes until they told me.
Glass eyes have come a long way and I did not know they had glass eyes until they told me.
supravita [OP] 4 points 1y ago
It’s helpful to know that others have made this decision as well. Thank you! At this point a glass eye would look more normal than my actual eye. It’s incredible how beautiful they can look!
MolemanusRex 5 points 1y ago
I had much less severe symptoms than you and I still felt that getting my eye removed was worth it. What are you worried about? Losing your depth perception or another area of your vision?
supravita [OP] 4 points 1y ago
I’m worried about the risks that come with only having one eye: dependency on one good eye (increase risk of blindness if anything happened to the good eye), a bigger blind spot, depth perception and dizziness.
Jabez77 4 points 1y ago
I’m monocular and don’t have a huge amount of adjustment with these issues. Sounds like it’s worth it to go ahead with your plan. Monocularism is liveable, sounds like your uncle is managing!
kin211 2 points 1y ago
Currently I have one functional eye and I can tell you, life is 90% same as a sighted person. Took me 6 months to fully get used to my sight.
supravita [OP] 1 points 1y ago
Thank you! That’s nice to know about the timing too
pisces0387 2 points 1y ago
OP
A little late to the party here, but sure I'll weigh in anyway, why not?
I was born premature, retinas detached, had my own eyes till I was 9, there then followed a year of being on every drop known to man, eventually the decision to take the eyes out because of some fluid on them heading towards the brain, then after the eyes were removed, 14 surgeries in the space of a year, because apparently, my tissue thingies don't like to just co-operate and do what they're told, kinda like me I suppose... Anyway, eventually after a year of trying to make tissue stuff do things, the orbital implant was abandoned, I now wear 2 prosthetics which I picked their colour because of an icecream I loved when I was a kid, I wanted my eyes to look like chocolate!
No pain and if you have a good ocularist they will make you a fabulous prosthetic. Believe me, just for no pain and no other reason, it's worth it to get the eye out, if you can.
A little late to the party here, but sure I'll weigh in anyway, why not?
I was born premature, retinas detached, had my own eyes till I was 9, there then followed a year of being on every drop known to man, eventually the decision to take the eyes out because of some fluid on them heading towards the brain, then after the eyes were removed, 14 surgeries in the space of a year, because apparently, my tissue thingies don't like to just co-operate and do what they're told, kinda like me I suppose... Anyway, eventually after a year of trying to make tissue stuff do things, the orbital implant was abandoned, I now wear 2 prosthetics which I picked their colour because of an icecream I loved when I was a kid, I wanted my eyes to look like chocolate!
No pain and if you have a good ocularist they will make you a fabulous prosthetic. Believe me, just for no pain and no other reason, it's worth it to get the eye out, if you can.
supravita [OP] 1 points 1y ago
Thank you for coming to the party! That sounds like a heck of a journey, but I’m glad you are without pain now. Thank you for the encouragement.
ChipsAhoiMcCoy 2 points 1y ago
I’m super curious about your history with your eye would you be able to elaborate more? I’m unfamiliar with glaucoma and other such things you listed but due to my LCA I am susceptible to cataracts and such my condition is basically that the rods and cones on my right now deteriorating over time until eventual for blindness what exactly is the history of your eye? Thank you for posting this! I would say get rid of it you’ll have a great time without that pain in your life and I’m sure and they’re not super distant future there will be some way to create an artificial eye of some kind that could replace it in the future
supravita [OP] 1 points 1y ago
I was born with a cataract, have glaucoma from that, the artificial lens is pushing forward with the benign cells still leftover from the congenital cataract. I’ll have to replace the lens in the future. My cornea is disintegrating and two transplants haven’t lasted long enough for me to “enjoy” them. I had part of my iris taken out to let the eye pressure decrease and will need an artificial iris sometime in the future. The top priority is the pressures, but the miserable part is the cornea since I cannot see the majority of the time due to cloudiness. I’m sorry to hear that you are going through eye issues. Is that in one eye or both?
codeplaysleep 2 points 1y ago
I was never able to see out of my left eye, but I had it removed when I was 17 because it started hurting. I had less post-op pain the day after surgery than I'd had nerve pain the night before and the prosthetic looks much better than my real eye ever did.
supravita [OP] 1 points 1y ago
That’s an incredible instant change. I’m so glad it worked for you! Is your right eye reliable?
codeplaysleep 2 points 1y ago
Depends on your definition of reliable. It's stable, but I only have central vision at around 20/100.
TK_Sleepytime 2 points 1y ago
I had my right eye removed when I was an infant so I can't speak to making the decision. But one-eyed life ain't bad, even with low vision in my remaining eye. People don't notice unless I tell them and even then they forget and try to hand me something on my blind side lol.
supravita [OP] 1 points 1y ago
The blind side leaves a lot of room for humorous mishaps! Are you ever worried about your other eye getting injured?
TK_Sleepytime 2 points 1y ago
Not really. I wear glasses so that helps keep me from being worried about random things hitting my eye. I more worry about making sure I remember to stay hydrated and use eye drops. Dry eye has scarred my cornea so I am doing my best to make sure it doesn't get worse.
ravenshadow2013 2 points 1y ago
Havent lost it yet< have my prosthetic all picked out for when it finally happens
supravita [OP] 1 points 1y ago
Are you going for a look to match your other eye?
ravenshadow2013 2 points 1y ago
No I've chosen a solid black one and a solid white one, kinda gives people a heads up on my mood for the day
chitarralove 1 points 1y ago
I can relate. I had my eye removed back in 2016 after putting it off for 7 years. My issue started with a detached retina and snowballed from there. The pain was a lot. I’d had numerous surgeries before but nothing like this. Plus all the emotions I felt at the time.
supravita [OP] 1 points 1y ago
Do you ever regret removing your eye? I’m sorry you had to go through all of that.
NoClops 1 points 1y ago
Sort of.
bassforce3000 1 points 1y ago
I am in a similar position to you right now. I am 29 and was born with glaucoma. It is much more severe in my right eye. Over the past year there have been multiple complications in my right eye including eye infections, corneal abrasions, a failed shunt, and multiple laser surgeries to lower pressure.
Yesterday I found out the latest laser surgery was not successful in lowering pressures, and I was put back on diamox pills (terrible side effects). I’m at the point where I am wondering if it is worth keeping my right eye. I still have 20/20 central vision in my left eye with field loss. I’m going to speak to my doctor tomorrow about my options and prioritizing quality of life. I definitely have some of the same fears you mention though.
Yesterday I found out the latest laser surgery was not successful in lowering pressures, and I was put back on diamox pills (terrible side effects). I’m at the point where I am wondering if it is worth keeping my right eye. I still have 20/20 central vision in my left eye with field loss. I’m going to speak to my doctor tomorrow about my options and prioritizing quality of life. I definitely have some of the same fears you mention though.
supravita [OP] 2 points 1y ago
Going through procedures and realizing they didn’t work is very discouraging. I’m sorry you’re going through all of these issues. Have they tried you on drops? Those pills made me feel loopy and were diuretic for me, I hope you can find an alternative. I had a shunt put in when I was younger and need another now, maybe that can help you. I hope the doctor can give you a better option!
Amazing_Ad7386 1 points 1y ago
I have no experience with this and I'm sorry I can't give you any consolation, but if you forgive me for asking: have doctors considered an artificial cornea for you? Or is that not possible in your case?
supravita [OP] 1 points 1y ago
I’ve had a DSAEK and a DMEK procedure. The DMEK might have lasted longer but I had such high eye pressure that it destroyed the last donor transplant. I’ll have to ask about an artificial option!
Amazing_Ad7386 2 points 1y ago
Yeah, I really am no eye doctor and don't want to give medical advice, but it sounds like you are in the category those devices were designed for (continuous graft failures) and if you're considering to let the eye go because it's so bad it's worth asking your doctor whether they could try it or what they think since it may have become ethical to do it from a risk benefit perspective (these kinds of implants aren't magic, in some cases they can make things worse like glaucoma etc.) In any case, best luck to you and stay strong!
supravita [OP] 1 points 1y ago
It’s worth a shot to inquire about it. Thank you so much!
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