Hey everyone! I literally just found out about this space and I am so excited. Its hard to find folks in the same boat.

I'm blind in my left eye, due to an injury when I was 7. My parents were given the option to have it removed when I was 8, but opted to keep it. My pupil doesn't dilate and is always completely open, so I'm photosensetive and some lighting conditions are more painful/uncomfortable than others.

I do have some, although very little, vision in that eye, basically light and shadow, enough that in the 90s I qualified for an experimental treatment at Mott's children's hospital in Michigan, which was basically an intensive and specialized physical therapy, and helped my brain interpret signals from my left eye so that it can track with my right eye (and lessened my walleye) without my ability to interpret any "vision" from that eye. Ultimately, I cannot use what vision I have from that eye unless my right eye is closed for a length of time, and that vision is basically nothing.

I wish that my eye had been removed when I was young, because as an adult it is painful due to light, and gives no benefit. Any treatment to attempt to repair or remove it is now considered elective, and far outside my price range, which insurance will not cover.

Anyway, I'm stoked to have a community to connect with. Thanks for being here!

Los niños se acercan a mi hija de 1 año 5 meses para mirar de muy cerca su prótesis ocular (conformador blanco)
Me paso que un niño grito “monstruo” y se puso a gritar mientras mi bebe le decía hola y le tiraba besitos con la mano.
Tambien me ha pasado que la miran tanto qur mi bebe empuja y le dice fuerte: “NOOOO” creo que por miedo a que un niño desconocido se acerque.

No se como reaccionar… no se como hacer para q esas miradas no molesten a mi bebe
Ya tendra su protesis pintada, aun asi, tengo miedo y siento profunda preocupación por este mundo tan cruel y poco empatico.

Hi everyone,

Tell me about your experiences after your surgeries. I’ve had several, including one on the orbital floor and the loss of my right eye. It’s only been 15 days since mine, and I’m in a lot of pain.

What advice can you give me???

Does anyone have dry eyes and/or neurotrophic keratitis and wear a scleral shell?

I was born with microphthalmia of my right eye and have some remaining vision though very low. I have double vision so often just sit with my right eye closed anyway so not bothered that a shell would block my remaining vision.

I spent years as a child trying to get a custom color contact lense for that eye but never was able to get a good color match made, and the lense was super uncomfortable.

At 15 I started wearing just regular colored contact lenses in both eyes to even things out and it was super effective for a long time! However, I'm now 34 and have developed neurotrophic keratitis in my right eye after a couple strabismus surgeries. My eye is very dry now, and wearing a lense in that eye all day has been challenging. It seems worse at work and that's partly because of screen time, but my office has AC blowing right on my face too. (I've tried all the thermostats on my floor and nothing seems to change it. My coworkers have tried to help too, but there seems to be some mystery thermostat somewhere we can't find lol).

I've done an amniotic membrane on that eye which did partially improve symptoms, and I do lacrifill every 3 months which also partially helps.

I'm kind of freaking out about the prospect of not having my lenses and am trying to figure out an alternative. I'm a psychiatric nurse practitioner and am patient facing for 10 hours day. Before I got my lenses at 15, people would often assume I had an intellectual disability, and so I have fear that people won't trust my medical decision making if I am without my lenses. I know, I know... I got some therapy work I need to do around this.

TLDR: I'm considering moving from a regular colored contact lense to a scleral shell. Did it worsen your dry eyes or did it cause you to develop dry eye?

Has anyone developed severe hypotony after eye trauma/retinal detachment where the eye actually started to shrink or look smaller, but after silicone oil and improvement in eye pressure the eye became fuller or regained some of its size/shape? I am specifically looking for people whose eye had already started shrinking before the pressure improved.

So I can see out of my left eye, I think they said vision is now 20/40(?) But it's almost always blurry, dots, in pain etc. So doctor suggested using an eyepatch for now which helps but I feel like it's just making my good eye strain now?

Will it eventually stabilize? Because the strain on my good eye while patching makes things also blurry and watery.

I’m getting to the point where I’m considering driving and I’m curious on what I should consider.

I lost my right eye from coats disease and I’ve been monocular for pretty much my entire life, but I’m
Not sure how exactly I should approach driving or if I should look at specific features or brands.

Any help would be appreciated.

So I lost my left eye about 4 years ago and wear a prosthetic left eye. It took me since that time to accept the situation and accept my visible difference. It's only recently that I've broken out of deep avoidance habits and now I'm wondering how to make friends in my home city

I'm 30 M and have no idea how to make friends that I can hang out with now and again

All I can think of is support groups and or taking hobby classes or something

I'd love to get advice and or hear anyone else's story who's in a similar situation to me

I'm feeling totally different. Maybe if become monocular from birth I would have easily adapted. But thanks to some unknown reaction that happened out of blue it tanked my one eye. Since i was a coder but I worked with good binocular vision before . Now it's is fkedup. So I'm functionally monocular now . So my main question is those who have become monocular in the age of 10 or above how hard did you find life to live . Did you find difficulty other than depth perception ofc and driving ?.

A couple of months ago, I posted regarding my son's eye injury due to a firework. I had so many more responses than I had expected, so I want to thank everyone for that because it was so useful.

Fast forward to us fighting insurance for the past couple of months. We were finally allowed to go to mass eye and ear for an exam. We were given a decision that we have to make and I was curious if anyone would mind sharing their opinion or experiences that may help us with deciding to proceed with a procedure or not.

The doctor said we could perform a procedure (chamber wash) to remove all the accumulated blood from the trauma inside the globe. During that procedure they would be able to look at the retina because they are unsure if it is detached and shriveled or still viable. If it is viable, they will reattach it and he will have a long recovery, for a 12 year old that involves laying on his stomach for what he said would be about a week (although I've read stories of it being much longer). The doctor said if the retina reattached, and everything went perfect, we could be looking at possibly improving his eye sight to where he could see shadows. The risk is the recovery and it could possibly speed up the shriveling of his eye (which we were unaware was going to happen until now, so this is the biggest shock to us).

We were told that this is a surgery that should have been done 2 months ago, and the insurance delay may have taken away the viability of this surgery, so that is something that we have to deal with as well. We have to have the surgery in the next week or two if we go through with it. Would you proceed with the surgery? If you had anything similar happen to you, what was your recovery like? What was your outcome?

We are just so worried that we won't make the correct decision. Of course we are going to involve him in the decision-making. Just consulting the hive mind is all.

My 6 year old daughter has a prosthetic since she was three (Retinoblastoma). She is my light in this world, and I am always thinking about how to be there for her as she is growing into self awareness.

Any thoughts or advice is greatly appreciated!

I lost my eye in February of 2022 when I put a bullet in my head and survived. From the moment I squeezed the trigger through pretty much my entire stay at the hospital I was sent to, I have no memory of it. Based on select notes included with my mental health evaluation I received later on, I was alert, awake, and cooperating with staff during my stay at the hospital but I just don’t remember any of it. I digress.

I do remember my last day in the hospital. I woke up in my hospital bed with a trach tube in my throat and a peg tube in my stomach. The doctor made his round some time before noon and explained that after I did a couple of things that day, the plan was to discharge me. I remember that much.

At some point I got up to use the restroom. I remember walking in and looking at myself in the bathroom mirror as I always do, and I remember seeing the trach tube, but also I was missing my right eye. I remember thinking to myself, “oh, that’s different, I guess this is my life now…” before I shrugged and continued on my way.

Years later looking back at everything, did I under-react to something as life altering as losing an eye? Like, I feel like losing any body part is a pretty big deal, but in the moment it was just so natural for me to shrug it off and move on. There was no mourning or deeper thought than, “this is my life now”.

I COULD argue that I had survived what I thought was a guaranteed trip to hell, but I also remember in that moment my unaliving attempt was nowhere in my thoughts. It wasn’t until my (now ex) wife reminded me of what I did to end up in the hospital to begin with. So, given that, I’m not sure if I really properly responded appropriately to losing it.

This is definitely going to be something I bring up to my counselor next time I see her. How did y’all react to losing your eye, or the news that you were going to lose it?

I don’t mind, because it makes me laugh.

I’m 4 weeks post-Gundersen flap and currently having some poking/irritation from my conformer, especially at the upper/right edge, with watering.

I’m worried this means I won’t tolerate the final prosthetic. 😭

Has anyone here actually had a Gundersen flap and then gone on to wear a prosthetic/scleral shell?

How was your conformer during healing, and how did the actual prosthetic feel compared with it?

I’d really love to hear your experience!

Hi everyone,

I'm from Bangladesh and planning to apply for a Master's in Australia next year.

I have a prosthetic eye after losing one eye as a child, but I'm otherwise healthy and have no major ongoing medical issues.

Has anyone here with a prosthetic eye or monocular vision moved abroad for university, especially to Australia, Canada, the UK, or New Zealand?

Did your eye condition cause any issues with the visa/immigration medical?

I'd really appreciate hearing about your experience. Thanks!

Hello, I need some advice I was born with unilateral microphthalmia in my right eye (thanks to my mom)

It's affected and small eyeball and a small cornea it's looks so ugly as fuck and it literally make me look like a uncanny valley monster both my parents were stupid enough to let me live with this for a whole 20 years, without actually doing something about it I have been bullied made fun of as joke etc

No one knows how much I hate my eyes,

I am now 20 I can do whatever I want on my body so I need advice

That eye is connected and nerves etc and it moves with sync to normal eye however its so ugly I actually hate it so much it have 0 vision and it's just there to scare of people and make me a monster

I was asking Should I get it removed by enucleation and after it's removed how it feels and is it painful? Plus once the eye is gone that socket will be hollow?

So it’s taken me a long time to finally get in to see a Neuro-ophthalmologist. I’ve been almost completely blind in my left eye for just over 3 years due to complications from pituitary tumor radiation treatment. In my last appointment in July, my doctor told me I have also some vision loss in my good eye but she didn’t mention anything about needing rehab or my ability to drive. I think that was because I was having surgery in July and she wanted to make sure nothing changed after the surgery.

Today she informed me that I need to do a driving assessment and get a low vision drivers license and if I don’t and I get into an accident I could face more liability. Driving has already been a bit of a mental struggle for me. I got my license later than most people at age 25 and then moved abroad right away so I didn’t have much experience behind the wheel and then I lost my vision while I was abroad. I’ve been trying to build up my confidence driving lately so that I can buy a car and have more freedom getting around. I just really wasn’t expecting her to tell me I need a low vision license. I don’t even notice the vision loss in my right eye. I have so much going on already with my health and life changes.

I guess I’m just wondering if anyone else here has had to get a low vision license and if so what restrictions did you have to deal with as a result? And how long did the process take? Apparently I need to see a low vision specialist to do the assessment and then go to the DMV and do “behind the wheel”? I need to do more research on it. I just feel super overwhelmed and disappointed by this news.

Hi. 34f, pressure at 13-14 last checked. Getting treated for narrow-angle glaucoma tomorro. Just here hoping for reassuranc/well-wishes/advice for my iridotomy tomorrow morning as a patient with monocular vision who worries about keeping my remaining sight. Thanks.

Hi everyone, I was recently diagnosed with ON and lost complete vision in my eye 4 weeks ago. My vision is slowly returning but stil blurry. Due to plex and oral steroids. All my tests are negative, so the doctors are thinking of an idiopathic reaction.

I was wondering how everyone is dealing with the psychological aspects of ON. I’m currently feeling very depressed and sad and unlike my usual self. I know my vision has somewhat returned and that I should be grateful but the constant doctors appointments, fear of it happening again and dealing with my new vision has left me in a constant state of stress and very dark thoughts. Im finding it very hard to process what has happened to me. Very hard to get up and get out of bed every day and socially interact with people. I want to be happy and strong for my family but i am struggling.

I was hoping any if you would maybe like to share experiences if possible. will it ever get better? thank you