Blind person here:

Be angry right now. Take time to feel that, because it’s valid. There’s going to be time for all the nice, fuzzy, well wishes and comments on your strength and resilience later. Right now, feel what you need to about it.

Take care.

I can completely understand your anger and it is valid. As an aside I currently have a student who has had surgery for and transplant for his cataract. And has had them fail twice. It may have been mentioned to your parents and they may have thought it better to not put you through that trauma. But it is your eye and it is your vision and I can totally understand and think you are justified in your anger. I just thought you should know the other parts of it too.

Let yourself be angry. You bloody deserve to be.

The unfortunate answer is that sometimes things are missed, especially if they are uncommon or masked by other conditions. In this case you already had an eye condition so issues were likely written off as an extension of that, where instead they should have been examining your "good" eye more closely to preserve your remaining sight.

Missed diagnoses are worryingly common, always see a specialist if you can, and if possible get a 2nd opinion. If you ask around you'll find that there will be more stories of mistakes than you would think. Just within my immediate family there are loads. Me: adhd - masked as I'm female and in school when it wasn't considered a girls condition. Eye condition - missed, very rare, discovered when they found it in my grandmother and realised it is inherited. Chronic pancreatitis- masked as gallstones as I'm fat and female. Husband: ehlers danlos syndrome - medical neglect by family resulted in a diagnosis of "clumsiness" and faking. Grandmother: eye condition - Missed, very rare. Grandfather- skin cancer, masked as dermatitis. Step father - cancer, incompetent doctor diagnosed him with gastroenteritis then diverticulitis, then rang him 2 years later to advise he go to an oncologist.

If you ask around you'll probably feel just as angry, and quite right too as we are supposed to trust these people with our lives, senses and wellbeing, but hopefully you might feel a little less alone. X

Blind since birth also, in both eyes. The anger is totally valid. My mother told me a long time ago that they did offer some kind of surgery but she decided not to go through with it because like someone below said, having it fail at some point would be worse than just living with the blindness. That was also in 2000, things have gotten a lot more advanced since then.
There may be hope for us in the near future.

I'm sorry. That is so frustrating. Your anger is valid.

I have an untreated lazy eye that today offers me at best "peripheral vision" that was actually diagnosed early but as a young child, I did not have the discipline to wear a patch and my parents did not care enough to force me to.

There are a few optometrists that practice "vision therapy" so if you were to proceed with any corrective surgery, know that you would then need to apply yourself to years of vision therapy to reteach your brain.

Hey! I happened to be EXACTLY in the same boat and it all turned out well for me so I hope my story can give you some measure of comfort. A bit of context: Posterior polar cataract in both eyes, the right one situated right in front of the pupil and the left being slightly out of the line of vision. Undiagnosed until my late 20s, of which my vision had deteriorated to 10% (20/200) on the left eye, and about 40% (80/200) on the right. Had two surgeries performed by a surgeon at an academic hospital specializing in complex and congenital cataracts. Started wearing glasses for myopia as a child.

I was diagnosed as a child with a cataract in my left eye, which my ophthalmologist at that time dismissed as a tiny, regular cataract caused by chronic steroid intake (I also had severe asthma). He told my mom that I could just leave it alone until it gets bigger as I age (of which it would start to affect my eyesight), and then have it removed via a 15 minute procedure. We took his advice laying down and proceeded to do nothing with it in the years that came. I also complained about a strange yellow tint in the left field of vision, but was also surreptitiously dismissed as natural physical asymmetry of color perception between both eyes.

However, as I got older the opticians who did my scheduled myopia checks noticed that my vision could no longer be corrected to 20/20 and concluded it had more to do with muscle weakness than the cataract, of which they could obviously discern using their equipment but noted it was fairly small.

In my 20s I moved to another country and realized my vision had begun to deteriorate rapidly to a point where I started to have problems reading, night vision and extreme glare. Wearing my glasses gave me headaches, and had been struggling with concentration issues for years. I was accident prone and at night I could barely tell the sidepath and the sewer apart. Eventually I had to resort to closing my right eye in order see anything up close so I was referred to an ophthalmologist by my general practitioner who thought that it might be time to remove the cataract.

Lo and behold -- I was told I had posterior polar cataract in the left eye, and that corticosteroid cataracts looked very different morphologically. I had only 10% (20/200) of my vision remaining in the right eye and the headaches were caused by severe anisometropia (-5.25 in the left eye, but the cataract gave the right eye an aberrant +26.00, yes, +.). Later I learned that the left has one but it was slightly towards the side of the pupil. She told me that the condition is extremely rare, congenital and easier to remove in infancy when the cataract tissue is more malleable. Surgical complications are high, with about 30-40% chance of something going awry which would consequently lead to more surgeries and possibly worse eyesight than before. She also could not guarantee that it will restore my eyesight because she had good reason to believe that I also had amblyopia. And because I've never known what good vision is really supposed look like, I normalized the constant fogginess. She told me it was my choice whether to go ahead with the surgeries but if she was me, she would because 20/200 meant there wasn't much to lose. She referred me to an academic hospital because the surgery was too complicated to be done in a regular setting.

Covid did unnecessarily lengthen the entire process and and during that time my vision had deteriorated even further but I was eventually looked at by one of their head surgeons who also happens to specialize in cataracts such as mine. The surgeon affirmed their rarity but was quick to add that his their team has significantly more experience with them than regular eye surgeons. They have special diagnostic and surgical equipment that regular eye institutes do not necessarily possesses. Technology has made significant strides, chances of things going down south during the operation are lower than they used to be, they have multiple backup plans and blindness as a prognosis in event of complications is very unlikely. Adult amblyopia is harder to treat than childhood amblyopia, but is treatable nonetheless. After two longer than average surgeries, both afflicted lens were removed safely and replaced with monofocal ones.

I was told that it would take a longer time for younger people to get used to lens implants but it did wonders for my eyesight. I still have to wear glasses due to mild myopia and hyperopia due to monofocal implants but the hospital tested my vision and it can now be corrected to 220/200. The amblyopia fears were unfounded, thankfully, and I did not have to undergo treatment for that. As of now I am constantly amazed by the profound amount of detailed in my surroundings that I have never been able to notice until now.

So if I were you, I would obviously take a bit of time to sit in my anger/grief just to mourn the years and quality of life lost to crappy vision because they are valid and need to be acknowledged. Then, I would see if there were any ophthalmologists specializing in pediatric opthamology and/or complex cataracts because they come across cases like much more frequently. Good luck!!!

I had the same thing. My posterior cataract was removed at age 28. I’m 58 now. I have Stickler Syndrome. I went blind in right eye at age 6. I was diagnosed with SS after large detached retina at age 14 (1977) ive been through quite a lot with my eye over the years but mostly 85% of time had driving vision. I had massive detachment in May and then again at 6 weeks post op, I haven’t had vision good enough to drive since May.
Last tested at 20/200 ( legally blind) 3 weeks ago but now trying Avastin injections to reduce swelling in retina a fluid under retina. I’m sure you’re quite angry. I’ve dealt with so many ignorant Orthopedic doctors over the years but have been pleased with the team of Retina specialists at Piedmont Hospital in Atlanta and then later Emory Eye Center in Atlanta. Please try to go to a retina specialist because their level of expertises outpaces other Eye surgeons.

Where do I go from here? ... Attorney's office.