r/monocular

Hi All,

I apologise if this question has already been asked at all. I am a 24 year old female who has been blind in my right eye since age 7, total loss of vision in eye aged 10. I was born with an under developed optical nerve that overstretched and is no longer functioning after a skull fracture and TBI at 10. (I honestly don’t know the technical medical term anymore.)

Now, due to this, I am used to eye strain, pain and general irritation due to left eye working overtime etc. but recently my blind eye has been…annoying.

It feels like it is aching, twitching or pulsing in the socket… my eyelid and like eye socket cavity / behind my eye feel very painful, kind of like that part of my face in particular has a dull headache of its own. It waters when I go out in the sun, and I feel I need to squint it to block light even though it takes no light in.

i wear my glasses and prescription sunglasses diligently and use a basic sterile lubricating eye-drop once a day. I’ve never noticed this many issues with it, but I’m always having to be in and out of the doctors, and I honestly don’t feel like going again, so should I honestly go to the doctor for this or is this just a normal amount of eye strain that occurs as I age and things become more noticeable?

I also have small vessel vasculitis, so I am unsure if that is causing this or not either.

Thank you in advance for any advice or suggestions.

I will try to not make this too long, but could use some help. About a month ago I suddenly lost complete vision in my left eye. I spent 10 days in the hospital and have been to all the doctors I saw while in the hospital. It was a split decision on if I had NAION or GCA (Giant Cell). Well, now my right eye is doing the same thing. I have a really good doctor. He did testing etc., and we still can’t rule out either disease but he is leaning towards NAION. Back on steroids daily. My real question, has anyone else had this happen to them in both eyes and so quickly AND, what should I be doing to prepare for going blind in both eyes if it happens, which I am headed that way. I’ve been trying to find anyone to help me and all I get is sort of lip service or that they only service kids. I am an adult. Should I be trying to get a cane, and if so where and who trains you to use one? I’ve read to learn to use your phone with different settings, but I don’t even know what settings I’m looking for to improve my phone. I just feel like I need to hurry up and do something so when and if I do lose both eyes I’m not just so off guard and lost. I live in Austin and we have a school for the blind here but they only help children. I called the Lighthouse (I believe that’s right) and they didn’t have anything to say either. Is it supposed to be this difficult to find help? I’m starting to get really frustrated and I feel like I am running out of time. Please write nice comments and helpful information and thanks for listening. 🙏

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I have a birth defect that caused the back of my eye to be concaved and I've only got light perception in my left eye.

I've been experiencing weird symptoms recently. The most notable is discomfort/pain at the back of the eye, it seems to get irritated when I move it around. It's not agonising but it's uncomfortable/sore. I've also had issues with curtaining vision/vision fuzzing over in that eye, as well as what I can only describe as lighting through my eye sometimes. Not in a pain sense but a visual sense. It's almost like light travels through the veins in that eye really quickly.

I want to preface something before I get into the optometrist visit. I'm autistic and I find advocating for myself really difficult.

It's been checked by an optometrist who said it looks fine to her. She was very dismissive and not very helpful/informative. She basically said she's not sure and that maybe my brain is trying to fill in the blanks? She also implied that because that eye has never been very functional, it wasn't that important. As though to place worth on the remaining vision in that eye.

Yes the eye is almost useless but the key word is ALMOST. It has uses. For example it helps me detect motion on that side on sunny days because I can perceive shadow. On dull days or at night it is virtually useless but like I said it still has use.

She prescribed me two types of eye drops with no explanation as to why or what for and then sent me on my way. I tried to be firm/direct at the beginning and push for a better explanation or even some advice, maybe a referral or recommendation to someone or somewhere else, but I wasn't successful and now I'm just using the drops. One dilates the eye and the other is a steroid. She said they should help with the flashes but didn't say why or how and they haven't helped the flashes at all. They seemed to help at first with the pain but the eye is sore today. I'm thinking maybe that's because I was out and about outside with it dilated and too much sun hit it directly. I was told by my mom I should be wearing sunglasses when it's dilated. I wasn't told anything like that 😭

Don't get me wrong I'm not saying the doctor is lying - if she sees nothing I believe her - but I would like an answer or direction to go in regarding figuring out what it could be.

Has anyone experienced similar issues or been in a similar situation? Any advice on where to go from here would be really appreciated.

TLDR: Birth defect left me with light perception only in my left eye. Experiencing new symptoms - pain/discomfort at the back of the eye when moving it, curtaining vision, and a weird visual sensation that's hard to describe, almost like lightning or light shooting through the veins of my eye really fast. Optometrist said it looks fine but was dismissive, implied the eye wasn't important, and gave me two drops with very little explanation. She said they should help with the flashes but didn't say why or how and they haven't helped the flashes at all. I thought maybe they were helping with the pain but today it's sore again, though I was out and about in the sun while my eye was dilated so that might be why. I'm autistic and struggled to advocate for myself in the appointment. I believe her that nothing is physically visible but I know something is wrong, I just need help figuring out what.

Has anyone had similar experiences?

Hi everyone, I had my eye eviscerated in March, and I heard from the ocularist last week the cost for a new eye is over 5K. It's really 7K, but my Medicare covers some of it. This will include the temporary shell and then the final. I almost fell off my chair. I asked her, " What do poor people do? " She didn't answer. Informed me that I can pay her per visit as a payment plan. There will be seven visits.

I have a Medicare advantage ppo plan, with the same benefits both in and out of network. The occularist is A. Non-participating Medicare provider which means that they have the option to accept Medicare payment or not on a case-by-case basis. It was the first time I've heard of such a thing and my insurance confirmed it and of course, she is the only one in the area. The next one is about an hour and a half drive away each way.

My question is is this about what it cost for your prosthetic shell? And I don't even know if I ever need a new one, that every time it's going to cost me that. And how often do you need a new one?

Hi all,

I am looking to virtually connect with people who have experienced monocular enucleation and are open to learning about how their sensory perception may have changed over time. It's for a good cause that could help others with your condition. The goal is to better understand how people process what they see and hear, which could help improve knowledge and support for others with this condition.

If you are comfortable, feel free to DM me or comment and I can reach out privately with more info.

I have made a similar post about this and am re-posting in case anyone is still interested in this discussion.

Thanks!

Hey guys,

(30M) Around 20 days ago I had a severe eye injury while surfing. My board kicked back at me after I popped up making direct contact with my eye. It pretty much blew my eye to bits severing my globe and destroying all the important interior components of my eye. I am now completely blind in my right eye. I’ve had two surgeries with a third one on the way to fill my eye full of oil to try and keep my eye for as long as I can given it’s not causing me any discomfort.

Physically from the time of the injury to now I haven’t been in much pain at all. Just a bit of discomfort, soreness but very manageable.

It’s been a really hard adjustment just trying to come to terms that it’s not a fixable/treatable injury and that I’ll be like this for the rest of my life. With that being said I am pretty comfortable indoors, navigating rooms well, picking up dishes/glasses fine, getting better at catching a ball, and small tasks like that. I’ve been going on walks since I can’t really do much physical while my eye heals. Going outside is still a bit intimidating with my new view of the world but it does get slightly easier each time. I feel like I struggle to take in my surroundings when there’s a lot going on but I guess it’s all so fresh.

I was wondering if anyone had any advice, tips, or tricks on how to navigate this? Is there anything you’ve done that’s helped you adjust? Anything that I can get to help me? Anything I should get for my car when I’m allowed to drive again?Any future technology/procedures I should keep up with? Lastly how long did it take you to adjust and become more comfortable with monocular vision?

Thanks for your time and consideration

In 2023, I lost my vision in a horrific accident (pvc pipe cut my eyeball in half), and I am still rehabilitating (surgeries, retinal injections). In the accident, my retina detached completely, I had an open globe rupture, and a severe corneal laceration. Miraculously, I still have my eye, but I see nothing.

I often feel alone throughout all of this, I would love to hear from others willing to share their injury stories and how they are coping.

Hello everyone,

​About 24 days ago, i was in a garden, I was hit in the eye by a tree branch. For context, this tree had 1-inch thorns sharp enough to pierce through boots.

​I am actually confused whether a thorn directly hit my eye or if it was just the branch, as everything happened so fast i was totally numb not because of pain but fear .However, since the impact, my eye has not turned red, and I haven't experienced any blurred vision or severe sharp pain.

​Even now, 24 days later, I have a persistent dull pain and a little discomfort around and inside the eye area. It’s an intermittent sensation that’s hard to pinpoint. Since the eye looks physically clear (no redness or swelling) and my vision is fine, I’ve been hesitant to see a doctor.

​Could this dull pain be a sign of a minor injury from a thorn that I didn't notice, or just nerve irritation from the impact? Should I still get a professional exam despite the lack of redness?

​Any advice would be greatly appreciated.

Hi everyone,

I recently created a new subreddit called r/Exotropia for people dealing with alternating exotropia and related eye alignment conditions.

The goal is to create a focused space where people can:

share personal experiences ask questions about symptoms or diagnosis discuss treatments, surgery, and recovery support each other in day-to-day challenges

It’s still very new, so I’m slowly building up posts and structure, but I want it to become a helpful and supportive community over time.

If anyone has feedback or suggestions for improving it, I’d really appreciate it.

Thanks for reading. and please join my subreddit so i can get it to grow some and help more people.

Supposedly temporary, about three weeks ago I had a splitting headache which landed me in the emergency room. After CTs, MRIs and more stroke tests than I care to talk about they settled on Third Nerve Palsy...likely due to high blood pressure and hypertension the nerve controlling the motor functions of my left eye short-circuited. It's disorientating and I've been sporting an eye patch since my release.

Of the four I've purchased one has been pretty great and I sometimes go with the self-adhesive patches from Amazon, but can only handle those for a while before it gets irritated.

What other options are out there that I should consider? I also have to wear glasses if I want to see further than six feet away.

Thank you in advance!

Hi.

I am legally blind in my right eye but corrected my left eye is 20/20. I have depth perception issues, low peripheral vision, and severe light sensitivity. I was wondering if I would be allowed to get a cane.

In New York, United States if that changes anything

I was born with myelinated retinal nerve fibers (or as my doctor has always called it, myelinated optic nerve), and as such I don’t see out of my left eye. it’s not that there’s a black screen but all I see is a major blur. when focusing with my strong eye closed, I actually can see like a finger waving in my face for instance, or a fist about to punch me, it’s still a major blur and if you waved a hot dog in front of that eye I’d Probably guess that it’s a finger. i don’t know what other monocular people see, but my vision over there isn’t just a “black screen”like how good-visioned folks probably imagine it. I’m 21 years old.

ANYWHO..

i am wanting to pursue a career as a law enforcement officer. I’m located in Alabama but willing to relocate—

Is there anyone out there who’s familiar with this being possible or not? From what I found online, many agencies will reject people with monocular vision, but there might be a chance certain smaller or slower agencies will make an exception? are there states that dont have such strict vision standards?