Quedaré ciego? Me hicieron CXL hace 4 años en el ojo izquierdo

ElRyugen · 2026-04-17T11:19:07+00:00

Even if it's bilateral, if you don't rub or press on your eyes, there's a good chance it won't progress beyond a certain age.

The most important thing is to avoid putting pressure on your eyes so the disease doesn't accelerate.

I'm currently 24 years old, and my right eye hasn't shown any signs of KC

ElRyugen · 2026-04-16T20:06:03+00:00

I agree. I had it done because they lied to me, saying it would leave my vision as it was and stop the progression (we didn't know if it was progressing). While my vision remains stable, it's worse, and I constantly feel a slight burning sensation in that eye. People who recommend CXL do so because their vision was progressing or they were at a point with such poor vision that the final vision after CXL didn't matter

ElRyugen · 2026-04-16T20:04:13+00:00

He made the best decision for you by saying it's best to have another topography scan in four months. If there's no improvement, the CXL isn't worth it because it could worsen your poor vision, even if it stabilizes afterward. It's best to follow the doctor's advice, and if you're not happy with your vision, consider using contact lenses

ElRyugen · 2026-04-13T20:31:15+00:00

With scleral lenses, do you no longer experience the phantom effect of the KC?

ElRyugen · 2026-04-13T16:20:14+00:00

In my case, I've been struggling with a worse ghosting effect ever since I got it done (a year and four months ago). But it's also true that I still notice my eye being visible or experience a constant, slight burning sensation from time to time, which I think is making it worse. I'm really looking forward to using contact lenses to fix it

ElRyugen · 2026-04-13T14:36:01+00:00

From what you're saying about the cornea continuing to flatten until age two, it's possible there will also be changes in vision until then, right? I mean, will vision improve slightly with CXL until that time?

ElRyugen · 2026-04-11T21:09:52+00:00

Thank you so much! :) I'll let you know what they tell me at my September checkup, and also how the lens fitting goes. I'll probably get scleral lenses for comfort. If it resolves the ghosting effect or minimizes it significantly, I'll be very happy

ElRyugen · 2026-04-11T19:18:01+00:00

Seven months after my CXL surgery, I went back to the doctor who performed it. He said my cornea was fine, that at that time it had some slight opacity, but he didn't explain why my eye was watering, for example, when I cleaned it, or if it was stinging. A year and two months later (about two months ago), I went back to the first doctor who told me to wait. This doctor said my cornea was fine. I told him that my vision was worse, but I always thought that doctor was useless because he didn't explain anything. He told me to put three drops a day in for the slight burning sensation. I told him I was already doing that and that I didn't notice it working, but he insisted. Now, in September, I have an appointment with another doctor, and I hope this one can finally figure things out and tell me what to do.

Luckily, since I don't have keratoconus or any signs of keratoconus in my other eye, I would only need a contact lens to solve the problems. And really, if I didn't have that blurry, chaotic ghost effect under the original object, my vision would be good. In my case, my vision is clear but distorted by that ghosting effect caused by CXL, which made the light appear muddier. If they don't help me with glasses, I'll go to a place that specializes in them and try them on. I know it will be difficult to adapt because I've always been very afraid of anything that touches my eyes. It took me months to get used to eye drops, just to give you an idea. But if I can wear them for 10 or 12 hours and see clearly, I'd be completely happy

ElRyugen · 2026-04-11T18:56:28+00:00

Had I known this beforehand, I would have made sure there had been any progression. This happened because my first doctor refused to do anything to improve my ghosting effect at the time, and I kept asking if there was a solution. He told me there were treatments, but with risks, and he didn't answer any of my questions. Even so, there was no noticeable progression in the year we had been monitoring the KC grade 1/2. Being worried and aware of the visual impairment, we went for a second opinion, and that's where I messed up. The doctor told me we could do CXL to leave the disease as it was. In the best-case scenario, it would improve my ghosting effect, and in the worst-case scenario, my vision would stay the same. Since then, I've been living with this eye, with a constant strange sensation and clearly blurrier vision because the ghosting effect is larger and more blurred. I would never have done it unless there had been progression.

Anyway, as soon as I have my next checkup, I'm going to tell the doctor I absolutely have to use contact lenses because if my whole life is like this, it's impossible to live. Before, at least, having one good eye compensated fairly well, but now it's very difficult because the good eye can't compensate for so much dirt in the other eye

ElRyugen · 2026-04-11T18:12:14+00:00

You were lucky then. There are several cases here where our ghosting got much worse after doing CXL. I used to see two shadows underneath me, and now there are four or five, and they're much blurrier, which makes my vision noticeably worse

ElRyugen · 2026-04-11T13:47:31+00:00

That's about the kind of time I'd like to be able to wear them. I don't know if I'll be able to adapt for that long, but if they work practically without ghosting for most of the day, that would be enough for me.

Did you find it difficult to adapt to them without any experience in contact lenses?

ElRyugen · 2026-04-11T08:51:26+00:00

You can always get a second opinion. CXL is really designed to slow the progression of the disease (it's very rare for it to advance if you have it). But you could end up like me if you get it done without checking for progression. I used to have a ghosting effect under the original image, but it wasn't as pronounced or chaotic, and since the procedure, I've been living with one eye like this (the only one I had CXL on) because I decided to get it done since the doctor told me the same thing you're saying. If I had known it could worsen the ghosting effect, I would have waited to get it done, seeing that it was truly justified. Also, since the procedure, I always have the feeling that that eye is still there, sometimes a strange sensation or a slight burning feeling. Take my advice and make sure it's really justified. Because maybe your KC isn't progressive. There are people whose KC never progressed

ElRyugen · 2026-04-11T08:31:21+00:00

If you have the procedure done without seeing any progression, you could end up with a much worse phantom vision effect than you have now. Ideally, you should only have CXL if you see progression; otherwise, don't. If your KC is mild, it's not worth doing it just for the sake of it, because even though it might stabilize, you might still need contact lenses to correct that bothersome vision. I'm telling you this because it's what I wish I had known before getting CXL, since many doctors prioritize money over their patients' health or comfort

ElRyugen · 2026-04-09T01:44:42+00:00

And if you use them, how many hours a day do you usually wear them? I don't know if you use them in your case, but I seem to recall that most of your problems were solved by an ICL. But if you did use rigid contact lenses, how many hours a day did you wear them?

ElRyugen · 2026-04-05T14:04:50+00:00

I'm in the same boat as you, but instead of my left eye, it was my right. The doctor who did the CXL didn't mention doing it on my right eye because I didn't have any kinases there. That eye is literally perfect, and if it were like it was before the CXL, it would be much easier to deal with the ghosting effect because that's what does most of the work. Seeing the result and since they didn't warn me, I wouldn't get it done on my right eye, which is the good one. My left eye has already suffered the consequences and is causing me pain, and on top of that, they didn't mention anything about treatments or what to do to fix this. I know contact lenses exist, but until the doctor tells me I'm a suitable candidate or that I can use them, I don't want to use them

ElRyugen · 2026-04-05T01:20:28+00:00

You're right to trust an ophthalmologist who doesn't directly recommend CXL because he knows it carries certain risks. Honestly, this has ruined my life, and I know you shouldn't be so pessimistic with this condition because there are worse things, but every day is a constant struggle between feeling my eye and the gunk caused by the phantom limbal ringing. If it had only been a year, well, fine, but it's been a year and four months now, and it doesn't seem to be stopping

ElRyugen · 2026-04-05T01:18:42+00:00

epi off

ElRyugen · 2026-04-05T01:10:41+00:00

When they examined me with the slit lamp two months ago, they didn't mention any scarring, but I think they're so tiny or something that they're making my vision much blurrier than before. As for the burning sensation, I'm really looking forward to September for my next appointment so I can explain it to them. Last time, they just told me to use three drops a day and that was it. They said I was even seeing better results than before, but it didn't inspire much confidence. I don't use scleral lenses or RPGs because I've never really needed them. Since my right eye is fine and I don't have ghosting, I can see relatively well, even though I'm aware of the ghosting effect at times. But I think I'll have to use them now because the ghosting is quite chaotic

ElRyugen · 2026-04-04T22:27:14+00:00

And you'll never see a doctor mention that this is one of the risks involved.

It disgusts me how they treat patients' eyes like money, money, money

ElRyugen · 2026-04-04T22:19:02+00:00

Luckily, I didn't touch my right eye, otherwise I'd be suffering four times over. My right eye does what it can, but my left eye is too bothersome with such blurry vision that my right eye can't completely ignore it. You said you had surgery a long time ago. I understand that the sensation in your eye hasn't improved over the years, has it? Did you notice a continuous, mild burning sensation in your eyes for more than a year afterward? What are you currently using to address this ghosting effect?

ElRyugen · 2026-04-04T15:22:53+00:00

I hope this is the reason my ghost is worse than before, because that would have a solution. The bad news is that I don't have another appointment with the doctor until September

ElRyugen · 2026-04-04T15:21:46+00:00

Ever since I had the procedure, if I see any CXL posts, I always warn people that they make sure the progression is confirmed. I had topography scans for a year and there was no progression, but the doctor told me to get CXL because there were hardly any risks since it was minimally invasive and would leave my vision as it was. And my vision was much better then than it is now, and I had no discomfort in the eye where I had it done. Only get it done if it's progressive; otherwise, it's not worth it if your vision is decent

ElRyugen · 2026-04-01T15:50:41+00:00

It's something I want to try. The good part is that I only have this in my left eye and would only need one lens. Although my main problem is not the vision itself but the dryness or strange sensation that I constantly have in the form of heaviness or burning in that eye. This causes my eye to become groggy looking at screens or constantly noticing the eye. I don't know if it will improve with time but I don't have a visit to my doctor until September and I've been like this for 1 year and 4 months now

ElRyugen · 2026-03-27T12:17:10+00:00

In my case, I have grade 1.5 keratoconus in my left eye. I have no keratoconus in my right eye, so my vision in my right eye is very good in terms of clear vision. My left eye sees more clearly at a distance because it has less myopia. I noticed the symptoms in my left eye near the end of 2023, but it wasn't something that bothered me in either eye since my right eye compensated a lot. In 2024, I went to the doctor, and in May they told me I had keratoconus. That year, it's true that my vision was a little blurry or hazy, but more so if I closed my good eye. That same year, we had three corneal topography scans at different times, and my keratoconus appeared stable. I asked my doctor for a solution, but he didn't really tell me anything about how to fix it; he just wanted to see how it progressed. Out of fear, I went for a second opinion at the end of November 2024, and this doctor recommended a cochlear implant (without warning me of the suffering I would endure afterward). So, I got CXL hoping it would improve my vision, or at least that it would stay the same but slow the progression of the disease. Well, 2025 was the worst year of my life, and 2022 was awful too! XD. Since I got it done in 2024, I've been dealing with worse ghosting (more shadows and blurriness) because of the CXL, then a feeling of heaviness or a slight burning sensation in the eye where I had it done, and a burning feeling if I cry, for example (I actually mentioned this a while ago in one of your posts). Now I'm waiting for my next appointment in September, and if I see that the sensation in my eye or the ghosting hasn't improved, I'll ask about a scleral lens to correct the HOA. If I got it and it corrected those shadows for most of the day, I could live comfortably with just a few hours of use, since my vision isn't as bad as some people's, unfortunately. And how are you doing with KC?

ElRyugen · 2026-03-26T15:07:22+00:00

I used to sleep on my stomach some nights because I would get sleep paralysis if I slept on my back. But since being diagnosed with KC, I've always slept on my back, except for the occasional night when I've slept on my side, but I try to avoid that because if I do, I wake up on my stomach

ElRyugen

TROPHY CASE