I was also born with a cataract, but the doctors told my parents to wait till the eye developed before surgery (18 years old)

Queue 18th birthday, scored a 98/99 on the ASVAB, military says to get the eye fixed, and the doctors tell us:

"Oh, they should have removed this at birth, the catarct has caused a blind spot to develop behind it due to lack of stimulation in the eye. Its not correctable"

Needless to say, the "paperwork" proving us right was "lost" when they "transitioned to electronic records"

Did the doctors ever suggest you wait for the surgery?

If they had known it was a blood clot, do you know if would they have done anything differently?

Did your family receive any reparations from this?

For me, I am aware of my "blind spot" but my brain sort of "melds" it together like its not there at all. I cannot "see" a "black spot" in my vision, focusing on letters with that eye causes them to sort of jumble up, my guess is my brain is trying to fill in the gap, but otherwise everything looks normal. Do you experience anything similar? Did the blood clot/surgery damage your vision in a noticeable way?

It sincerely bothers that since OP posted this two hours ago and has not responded to anyone.

sorry :(

Also had a congenital cataract. I had surgery on my first birthday and I'm blind as fuck in my left eye. It sorta kinda works , like I can see shapes and colours the whole "How many fingers?" thing is just a mess. I assume everyone is flipping me off since I can't tell. :)

For what it's worth, I have no lens in my left eye so I can't focus on shit anyways. Now it just tries to have a staring contest with my ear. I think.

Sorry to hear about your eye. This was my mom's biggest fear when my optometrist gave her the option to do surgery. He didn't fully recommend it so she chose not to because the negatives are what you've apparently experienced.

Shits pretty great now. I just had both my eyes done within the last year. Cataracts from prednisone here. The only regret I have is that now I need reading glasses, but really only NEED them for fine print and sadly my cell phone.

They have some great lenses and I actually got one modern lens and one that was fully covered by insurance. The more modern one is better at most distances (except within 2 feet), the insurance covered one is good at most distances and optimal at a very small range (8-30 ft).

My eyes don't focus like they used to, but my vision is definitely loads better, and with the glasses I ordered vision is the best I have had since 10 years old.

Thats great to hear that its better :D My doctor last time i visited said that due to lazy eye complications, the one eye might not even get better if a lens transplant occurred. They dont know for sure, and more visits are coming up, so i'm still hopeful!

my 19 y/o will be going in for this soon - his cataracts are also due to prednisone as well as cranial radiation - your story has made me feel so much better about the future for him. he already has so many struggles in life left over from cancer, i was hoping that his vision wasn't going to be a struggle anymore. thanks for sharing.

best of luck!

Generally lenses are not placed in pediatric patients which is why it is a difficult decision if only one eye is affected as yo when to do surgery - Also depends on type of cataract. The risk of amblyopia are high with both options unless the parents are really committed to placing contact lenses on the infant's eye after surgery - Also kids tend to have an extreme inflammatory reaction after eye surgery that adults do not and it's harder to get post op drops in and do follow up exams. Also the general anesthesia needed for pediatric eye surgery is not harmless with many studies showing kids who had to have general anesthesia have lower IQs compared to kids with similar med history and background who didnt.

Sounds like you had surgery as a young adult, which means your eyes were their adult size and your visual system was developed allowing the placement of an intraocular lens.

The surgery to remove the cataracts occurred as an infant. Had to patch one eye as a kid to prevent lazy eye. The laziness in me wanted more laziness added to the mix as i actively avoided patching :(

At what ages is it particularly bad to be put under? Just as a baby?

Edits:I was actually asking about anesthesia but that was an interesting answer nonetheless.

The problem with cataract surgery for a baby, as it was explained to us, was that the eyeball continues to grow, so a permanent lens transplant is not an option. The other poster pointed out that parents would be left with the task of changing a baby's contact lens; I can't imagine that would be easy.

Our daughter had cataracts at birth but they weren't causing major visual problems, so we and her surgeon opted to wait until her eyeball growth was nearly complete. We would have liked to wait until she was 12 , but they became a visual impairment and the surgery was done when she was eight.

So, to answer your question for our child, it was never the anesthesia that was the problem; it was the mechanics of placing a permanent lens on a growing eye.

My niece had the surgery in both eyes and yes, she now gets contacts put in regularly. The doctor does it at least.

How old is your niece if you dont mind me asking?

the "how many fingers" thing is so annoying holy fuck. So long as it isnt more than like 5 feet away i can see it but after that yeah, just one big finger

I wonder why they didn't have you use a contact lens until you were old enough to have the implant surgery, as they did with me.

I do use a contact lens in my left eye.

Same here, but rather i can see fingers as long as they arent pretty far.

Why didn't they put in a lens?

(Also had a cateract as an infant). You don't put a lens in someone who isn't fully grown yet, because the eye develops and grows as you do. If you put a lens in, it can't change along with your eye, and will cause problems, or at the very least not work like it should. I used a contact lens in that eye through my whole life until I had a lens implant in my 20s and have 20/50ish vision in that eye, which the doctors said was pretty good. As wanna_be_doc said in a comment below though, it can't be fixed beyond that, because the problem isn't my eye, it's my brain.

spot on :)

I too was born with a cataract , told to wait till it " ripened" then tech advances would fix it. Now am told I should have worn a patch on my good eye to strengthen bad eye. I have no muscle tone in catarat eye , nothing can be done to help vision even if cataract was removed. Pretty much blind in said eye. Kicker is my stepsister had to wear a patch and vision is fine.

ahhh I was told to patch but I was too stubborn as a kid and kept pushing it aside to see "normal" resulting in still being able to see, but not all too great.

ahh i'm actually turning 18 on the 18th and havent really asked about anything in regards to the blood clot. I believe they did not suggest to wait for surgery (other than a lens transplant)

Oh wow. Happy early Golden Birthday (a golden bday is when you turn the age of the day you were born on). Mine was when I turned 18 too (4-18-91)

Didn't know that was a thing! Happy early birthday :)

Hey, interesting story. I posted mine here as well. Interesting that they delayed surgery. I've been under the impression that with my pediatric (or congenital) cataracts, my vision as likely to get worse if they weren't operated on. Though the operation = removing the lens so I was left with pretty bad vision. (To be clear when they remove your lenses as a baby they tend not to put fake ones in their place til adulthood... or at least when i was a baby this was the case.

Anyway, is the blind spot the only way your vision is affected?

I'm also affected by my brain not really being able to stitch the images brought by each of my eyes together perfectly. I'm always favoring one or the other, though this is mostly done subconsciously like controlling which nostril you breath out of. Anyway, it kind of feels like your blind spot and effects my ability to focus on one thing sometimes, especially in darker environments where I'll get some double vision type stuff going on. It's not really debilitating but can be kind of obnoxious. Any experience with that?

My left eye as of late (dont remember how it was growing up as i didnt really think about it) seems to only aid my peripheral vision whereas i cant really focus on anything unless i close my other eye to do so. For the double images, i haven't really had any issues with that (prolly because of lazy eye) but i have noticed that if i try too hard to have both eyes focus on the same image my left eye will quickly tire out and sporadically blink.

Is the black part all your pupil?

Edit: I'm just trying to understand the picture. So it's like half of your iris is gone?

Yep, you're correct

Wow. So it's not able to constrict and adjust?

Yeah, doesnt dilate so I have to wear glasses with transition lenses.

/u/whitestguyuknow, I hope you're learning today that one's pupil isn't an object but the hole in the center where our iris doesn't cover the lens.

EDIT: whitestguy...I had one job!

Why is the pupil black? Is it because the stuff inside the eye behind the hole/iris is black? Or is it because no light is bouncing back from beyond the hole for us to see a color other than black...as in the area behind the hole is all in complete shadow.

it's because no light is bouncing back

Fuck them OP. Who just sits around on an AMA waiting for answers to pour in? Ask your question and if it gets a response reddit will notify you, you can Check back later on how the thread went. No need to attack OP for not answering right away.

thanks for the defense but I do think I should have answered quicker :)

How often do you get questions about your eyes? From strangers? And is it usually how new people open conversations with you?

Most of the time it's only friends that ask after a long period of time where they feel it wont be awkward to ask anymore. People think it's too sensitive of a topic to open up with i guess.

From the get go is better because it gets anything awkward out of the way.

when I was a kid of anyone would have opened with it I definitely would have been super awkward and think they're insensitive whereas now it's a part of who I am :)

Do you know what IAmA stands for?

It's Ask me Anything! So, IAmA I guess.

where is OP?

sorry :(

How often do people notice?

Also, I'm pretty sure most people have two different eyes /s

First friend I ever had (kindergarten-9th) was because he noticed my eye instantly. He said I was like David Bowie for having two different eye colors haha

However, now that I have glasses with transitional lenses, no one notices other than the obvious lazy eye.

Can you see out of both eyes? How many fingers am I holding up?

smh too many times

The way OP is describing his condition, like his history, is a mess. It doesnt look like an accurate account. How could a clot cause a cataract? My guess is, OP had a congenital cataract. He was examined, and due to the very opaque lens, the doctors were not able to examine the retina. They probably performed an ultrasound and found that the retina was attached, so that they could perform the surgery. Only post op did they find that the eye had actually more issues than first observable, with some kind of vein or artery occlusion. The other scenario is they saw some kind of suspicious swelling on ultrasound in the retina, which may have been caused by some kind of vessel occlusion, and decided to operate in order to gain insight in the eye and be able to perform accurate diagnosis and see what they could do in terms of treatment. From the photos, it seems like OP underwent a complicated extracapsular cataract extraction through a temporal incision that was complicated with an Iris injury, leaving him with an Iris defect. Or the Iris defect is congenital, in which case it's called a coloboma. As far as visual potential is concerned, very difficult to say anything without seeing the status of the retina. In any case OP probably has a deep amblyopia to start with. At least he doesn't have aesthetically annoying exotropia in the affected eye.

Sorry, all i've heard about my condition are through bits and pieces of overhearing conversations, I've only recently became interested in my condition myself. This sounds spot on, thanks for informing me on myself :)

No problem, glad I could help. If you want to improve on your condition, there's probably a few things you should figure out, which an ophthalmologist should be able to tell you after examining you: 1) Do you have amblyopia? If yes, to which degree? What amblyopia means, is that the connection between your eye and brain is incomplete, due to your eye basically being dysfunctional in early childhood, meaning your brain didn't invest the energy building a strong connection with your eye. This is important in figuring out if you want to do something about your eye. If you have deep amblyopia in that eye, and are not aesthetically bothered by the appearance, it's probably best to leave it alone. 2) you will need your retina to be properly evaluated. Again, i can't say anything just by looking at your picture. Many congenital cataracts also have associated conditions with them, you may have some kind of glaucoma, you may have some kind of retina pathology. This should be evaluated because it plays a major role on the prognosis, should a procedure be untertaken. 3) If you do not have a deep amblyopia, and the retina, optic nerve and other important structures look more or less ok, so that some kind of functional improvement could be expected from a procedure, the next step would be to figure out what to do. 4) It looks like your aphakic, which means you do not have a lens. This means any image coming onto your retina is unfocused, and you want to correct that if the eye still has some potential. This would mean figuring out what kind of lens you'd need. They have some great intraocular lenses available nowadays. Your best bet is probably a monofocal lens, which means it focuses images at only a particular distance, say for far away (more than a few meters) objects, in which case you will need some correction to see near objects like the prints and images on a book (this is only relevant if you have a decent visual acuity potential out of the eye). All the other fancy lenses, like multifocal lenses and stuff, are probably a bad idea, because their physical attributes mean they have to split the light and cause a loss of contrast, which wouldn't be a good thing, especially if the signal sent to your brain is dampened through retina pathology or amblyopia. A toric lens, which could correct astigmatism in your cornea could be meaningful if you have a significant degree of astigmatism, say starting 2 Diopters. Monofocal toric lenses are available. 4) The choice of the lens will be dictated to some degree by the anatomy of your eye. When you implant an intraocular lens, it needs to be fixated somewhere. If you have some kind of remnant of the capsule of your lens, it could be used as an anchor point. This can be figured out by your ophthalmologist. From the picture, it doesn't look like your iris can be a good anchor point, as too much of it is missing. Another option is a sclera fixated intraocular lens, but these require relatively technically difficult surgery that is best left to someone with extensive experience with these kind of lenses. 5) As far as your iris is concerned, even with an appropriate lens, it's possible you won't achieve the best results if your pupil remains this big. This creates a lot of artifacts, like halos and light sensitivity. You may need some kind of artificial diaphragm to filter in the amount of light hitting your retina.

These are just a few tips, if you DO want to try and do something about it. Even after examination, it may be so that no significant gain is to be expected, in which case i would leave the eye in peace if i were you. Even if some vision improvement is to be expected after surgery, i would still keep in mind that every surgery carries some kind of risk, from infection to retinal detachment, intraocular pressure increase/glaucoma, or bleeding. All these factors need to be weighted in before you make a decision.

Hope this helped a bit breaking down the conditions, and what to ask next time you see an ophthalmologist. Cheers!

Just if your curious i have a few of these answers from over the years of going to optometrists (i'm still pretty clueless as this is just me overhearing things and selective memory and all, never really liked going to the optometrist) 1) due to me neglecting patching, they believe the connection is rather weak, going in mid july for a follow-up to see. 2) Recently got eye pressure checked, in early may it was around 35, whereas about a week ago it was at 21. This is before being prescribed eye drops, as the first place i got it screened was a clinic and the latter was a glaucoma specialist. After the specialist i was prescribed eye drops (latanoprost ophthalmic solution) but they still aren't sure whether glaucoma is present or not. Thanks so much again!

Thx for the info. Well it does look like you have glaucoma, although more tests may be necessary. Glaucoma is defined as any two of the following 3 criteria: 1) ocular hypertension, 2) optic nerve damage, 3) visual field defect. It looks like you definitively have criterium #1: Normal eye pressure is between 10 and 21 mmHg. 21 is the upper limit, may even be too much for your eye, depending on the level of damage that has already occured on your optic nerve from the chronically elevated eye pressure. Latanoprost is a good drug, and they can complete it with other drugs if they find this one agent doesnt do the trick in bringin the eye pressure to a level they find acceptable.

2 and #3 need to be assessed by your ophthalmologist. #3 may be difficult to assess, if the visual acuity in your eye is too low.

In any case, what I mentioned before in terms of lens surgery, it only applies in a select number of cases really, where potential gains are to be expected. Like I said before, make sure it would be worth it to undergo some kind of procedure, before you embark on anything. Your ophthalmologist may tell you him/herself it's not worth it, although sometimes it may be difficult to really make an accurate assessment, when many factors come into play.

Do you have any kind of report that says anything about the status of your retina, specifically if it's attached and the status of your macula/fovea?

I don't have any reports/info handy sorry :( Parents have been in control of appointments and information since I've been pretty embarrassed by my eye until recently. My old doctor probably has that info but has passed away since.(Arthur Rosenbaum, Out of curiosity any chance you are familiar with his work? I was told he was pretty well known in his field) Anyways do you know if I can still request copies of reports if it's been 10 years+, doctor is deceased and no longer going to the institution?

Do you wear contacts now? I was youngest person in my country to get laser surgery (1980) and wore an eye patch for years to strengthen my weak eye and reduce double vision. It worked, I'm lucky. I'm half blind in my eye but I still kinda use it (though other eye is super dominant) and when I'm tired my surgery eye kinda floats to the side without me realising. That stuff happen to you?

i wear one contact in my left eye, nothing in my left.

He's all left since the surgery

left eye is the one messed up (Snapchat flips image) so I'm all right now :)

Why all the negativity towards OP? :/ Calm down a bit, it's not the end of the world.

Also that eye looks like what I imagine an eclipse looks like, kinda neat

None of the negativity is taken to heart so don't worry! Im just new, didn't answer anything within like 6 hours of posting, and provided sketchy information. It's completely understandable :)

Why is this a screenshot from Snapchat?

That's what I was thinking too. He couldn't take a picture of himself?? I smell bamboozlement.

I guess i've gotten into the habit of only using snapchat for pictures as they somehow turn out always to be much higher quality (or at least i feel more confident in them i guess) sorry this seemed so sketch.

Nah it's cool! I don't use Snapchat so I wouldn't know about that. Otherwise, I'm entirely curious to hear about your situation and I'm happy you're here!

Thanks for being so welcoming <3

op r u ded?

Went out earlier sorry, honestly wasnt expecting anyone to respond.

How is it being the son of Hiesenburg?

funny enough my dog is named heisenberg :p

Have you thought about wearing brown colored contacts so your irises match?

Nope! No one notices the iris but it's one of the cooler aspects of it all in my opinion. When I got my eye drops to lower pressure it states it could potentially change iris color, sounded super neat. I was actually hoping it would change, until i read the container which states it may only dye it more brown, which is super lame.

Hey, I had cataracts in both eyes as a baby and had two cataract surgeries (lenses removed) when i was about 18 months old. I'm 28 now and just in the last year have gotten lens implant surgery in both eyes, which has corrected for most of my vision problems. I've gone from really terrible vision (roughly 10+ Rx in both eyes) to ~20/30 vision in both eyes... not great in low light and stuff but I get around fine. I wear reading glasses now most of the time I'm at my computer or reading and otherwise don't really need glasses. It's been really life changing. And reading this post and seeing other people's experiences has been cool too.

My eyes look more or less normal to others, though the pupil in my left eye was a little high of center on my iris. And I also had some strabismus, which is like being a bit cross eyed as well. Though through these recent surgeries and one other in college most of those issues are taken care of.

I'm curious what your vision is like. How do you see? Glasses or contacts help? Are you considering any treatments, or are there any possible?

I've spent a decent amount of my life being stressed out about my eyes for a bunch of reasons. How do you feel?

My left eye is around 20/300 and cant really see at all other than objects/colors. The problem with this is that since it was ever since birth, i have relied on my right eye causing my left to develop a lazy eye. Because of this, (still in the process of going to optometrists and checking on everything) they don't know whether a lens implant will actually do anything to help. When i first heard this i was pretty sad not gonna lie. However, after a few days i guess i figured that it's a large part of who i am.

Which eye is your favorite?

not the wrong one... so the right one?

Are you going to answer a single fucking question??

sorry, trying to answer all of them now to make up for it :(

Blood clot can't cause cataract (congenital cataract is a malformation) and it has nothing to do with tumor. Anyway, it seems you are speaking of your left eye but it is clearly the right eye that is affected. Are you sure this is your photo? A real patient would never do this kind of error. Nice try 😏

picture taken through snapchat (so its reversed), can provide a custom image if you're still wary. Growing up I went to USC every few months to get checked up, and would have around 10 people in the room watching the doctor at almost all times. Don't know too much about my eye and partially made this to learn more about it.