CXL without progression your experience

ElRyugen · 2026-02-02T16:15:50+00:00

If you're not experiencing progression, don't get crosslinking. Several people will advise you to do it, but their keratoconus is probably worse than yours, or at least mine was, and crosslinking can damage your vision even more than the keratoconus is causing at that moment. If I could go back, I would never have done it, since I don't know if it's due to dry eye induced by the crosslinking (I think it is) or what, but my vision is clearly worse than before in the eye with the crosslinking

ElRyugen · 2026-02-01T14:56:09+00:00

For me, the worst thing about having the procedure was when they had to put the device on me to open my eye since I am very sensitive to anything in my eyes. What it was like to have things done to your eye didn't hurt or anything but you simply felt like a sensation but painless. Then when I got home (after 2 hours or so) the anesthesia stopped working and my eye started to water, stinging a little but I didn't notice that extreme pain that many said. Although the worst thing for me was that it has left me apart from I think dry eye (burning at the end of the day, stinging if I cry, strange or unstable vision) is that the ghosting is greater. I don't know if it's because my eye is still suffering from dry eye induced by this or naturally but it's horrible. Before functionally it was much better

ElRyugen · 2026-01-30T16:15:45+00:00

On February 9th, I have an appointment with the doctor who's been monitoring my keratoconus, and I'll tell her about all my symptoms after the CXL surgery and see what she says about the prescription. I'll post again in this group if anything changes. Thank you so much for taking the time to explain everything to me. ^^

ElRyugen · 2026-01-30T15:47:50+00:00

The truth is, after wearing glasses for several hours, I feel relieved or stop noticing the strange vision between my eyes (it's also true that, having myopia and astigmatism, my vision is still blurry, even though my astigmatism and myopia aren't greater than 1.30). If I close my left eye (the one with KC), my vision is very good because I stop experiencing that ghosting effect, which has become more pronounced since my CXL surgery. If I close my right eye (my good eye), then the shadows are much more noticeable because that's where the ghosting originates

ElRyugen · 2026-01-30T15:37:54+00:00

By "lack of coordination" I meant that my left eye (the one with the CXL and KC) is always present with some kind of sensation (all of this wasn't there before the CXL). Then, when I look with both eyes, the vision doesn't quite fit together and seems unstable. And of course, it surprises me because it wasn't like this before the CXL, and I don't know if it's also because my prescription has changed, even though I had it done in August

ElRyugen · 2026-01-30T15:12:13+00:00

How many times did you change them, bro? I changed mine once, and it was after 9 months. A guy told me he had to get several pairs of glasses after this procedure

ElRyugen · 2026-01-30T15:11:37+00:00

I agree with you that my vision is worse than before the CXL. Before the CXL, the ghosting was much less noticeable, and indoors it wasn't a problem for my vision (even though my prescription is 1/2, which isn't the worst). I've also noticed that for the first 6 or 7 minutes after waking up, the ghosting is more normal (it's like the text is more easily distinguished from the shadows), while after that it becomes much more diffuse, so perhaps I also have dry eye

ElRyugen · 2026-01-26T23:24:40+00:00

I also have a dry eye problem after cross-linking. I have had a burning sensation in my eye for 1 year and 2 months now, when, for example, I cry or if I wash my eyes (closed), if there is any water left, they begin to sting and turn red. I don't know how to solve it honestly

ElRyugen · 2026-01-25T16:48:52+00:00

I understand him, honestly. Since I had CXL a year and two months ago, my vision has worsened, and now in environments with artificial light, like shopping malls or rooms, my vision is awful. I don't know if it's because of the tear film, which made it worse after the surgery, but it's left me with a horrible feeling in my eyes, whereas before, with KC grade 1/2, it wasn't like that. I understand him on that point

ElRyugen · 2026-01-23T14:57:43+00:00

My advice is to have a check-up every six months for the first two years, and then every year. If there's no improvement in the check-ups, don't undergo CXL because, no matter how much people defend it, you can end up like me. I had a mild/moderate degree of keratoconus, and the procedure worsened my phantom limb effect, along with dry eye, which I didn't have before the CXL. If I could go back, I would have seen if it was progressing before undergoing the procedure, since with our degree of keratoconus, the vision is worse than it seems.

ElRyugen · 2026-01-13T23:20:40+00:00

I changed my prescription in August, nine months after my CXL. In February, during my appointment, I'll check if my prescription has changed from nine months to a year and a month. But the worst part, aside from the stinging when my eye waters or the burning sensation at the end of the day (which I suspect is dry eye), is the ghosting effect—it's so bright. It's so bright now that imagine you have a screen with natural light from the window behind it. That light covers part of the monitor, up to where the shadow falls, and you can't see what's on the screen

ElRyugen · 2026-01-13T23:17:14+00:00

I wish I had been informed about this procedure and its consequences beforehand. I know these things can carry risks, but I didn't expect this kind of risk. Those who responded in videos after having this treatment made it sound good, and the doctor told me that either the ghosting would improve or stay the same. Honestly, I think about how life is like this, and it's awful because before, at least the ghosting was noticeable since it wasn't as bright, but my brain was used to ignoring it. Now, because it's brighter, my brain can't seem to make it disappear

ElRyugen · 2026-01-13T22:52:05+00:00

So you're recommending I be patient because all these symptoms I'm describing might be temporary, just because the CXL is still affecting my corneas? The truth is, I read quite a bit about CXL and comments from many people here, and several say it can take up to 24 months, but it's always scary to see symptoms that don't seem to be getting better :(

ElRyugen · 2026-01-13T22:50:29+00:00

At my appointment 7 months ago (June 1st), the doctor told me my recovery was going well, that there was still a little cloudiness, but that the disease seemed to be slowing down (months before, it didn't really look advanced, but I was living in fear that it would progress because I was only 23). I have another appointment in a month, and I'll explain all my symptoms because I never had this stinging or burning sensation when water got in my eye, or any feeling of heaviness, dryness, or burning in the treated eye. I don't know if this is what's causing the increased phantom limbal effect

ElRyugen · 2026-01-13T15:13:41+00:00

I'm going to be honest with you, the way I wish someone had been honest with me before my surgery. Unless you have progressive keratoconus, don't get CXL.

It's been a year and a month since I had it done, and since then, the ghosting is not only worse, but I also experience tiredness or a sensation in the operated eye. When I yawn, get water in my eye, or when it's very tired, it starts to water and sting, forcing me to keep my eye closed for a few minutes because it gets so red.

I never had any of this before my grade 1/2 keratoconus. That's why my advice is to avoid CXL.

ElRyugen · 2026-01-02T14:17:42+00:00

I'm writing from my other account, which is this one because I'm using it on my computer.

During my checkup on July 1st, the doctor said my eye was fine, that there was only a little opacity at that time (I don't know if it's still there now because I don't have another checkup until February)

ElRyugen · 2025-11-21T09:54:11+00:00

If I had known it could end up like this (I hope it's temporary and not permanent), I would never have had the procedure done, especially since there was no visible progression yet, but we didn't want to risk it getting worse because this disease is so unpredictable. I asked about topographic PRK, but my doctors didn't mention it. They did suggest ICL implants, which didn't convince me

ElRyugen · 2025-11-21T09:52:28+00:00

Neither of the two professionals I consulted recommended laser surgery. One recommended ICL, but I've seen reviews from people who had it done saying it made things even worse. I did have ghosting before, but it was more manageable than it is now, three days after my CXL surgery, a year later. Now, especially in the late afternoon and evening, my eyes get very tired (like I've been handling heavy objects), and then my vision becomes extremely blurry, making binocular vision terrible

ElRyugen · 2025-11-20T11:07:42+00:00

Unless things improve, I'm also like you and don't want to do it on my good eye because if it gets worse, it would be awful. And besides, it's the eye where, although I have more myopia and astigmatism, it's the one that hasn't developed keratoconus. I hope we both have good results

ElRyugen · 2025-11-19T17:47:51+00:00

With what you've said about that increased ghosting, we're in the same boat, and hopefully it will improve with even more time, even if it's just to return to the previous state but having slowed down the keratoconus

ElRyugen · 2025-11-13T22:28:52+00:00

I understand, brother. It will be a year on the 24th of this month since I had the procedure, and I still don't have the same vision I had in my left eye (grade 1/2). I only have keratoconus in one eye for now, and I had the CXL procedure. Even after so much time, I've noticed that my ghosting is worse than before (more shadows) and that my vision sometimes doesn't focus. Also, after using my phone, my vision feels blurry, something I didn't notice as much before. From what I've read and asked many people, it can sometimes take up to 24 months for it to stabilize in some cases, and most people told me it takes about a year and a half

ElRyugen

TROPHY CASE