Cross-linking procedures: What are your experiences?

I am scheduled to undergo a procedure called corneal cross-linking very soon. The goal is supposedly to halt the progression of a condition known as keratoconus,
which essentially involves a bulging cornea. From what I understand about the process, they remove the corneal epithelium—which I believe is a thin surface layer—and then treat the eye using UV light.
Since this particular procedure isn't commonly performed here in the States yet, I was hoping someone might be willing to share their experiences, whether they've gone through it themselves or heard stories from others. Are there any specific risks or complications I should be mindful of?

Hey, you can actually find a full breakdown of how the procedure works on the Mayo Clinic website—it’s listed under UV B2 cross-linking.
I hope that helps point you in the right direction!
If you have trouble finding it, just let me know and I'll try to walk you through the details.

Charles Cox60 said:I’ve got an eye procedure coming up soon called cross-linking. Apparently, it's meant to stop the progression of keratoconus,
which is when the cornea bulges out. From what I understand, they remove the corneal epithelium (I think it's like a thin layer) and then expose the eye to UV light.
I don't think this has been done here in the States much yet, so if anyone has any experience with it—whether it was your own surgery or someone you know—could you please share? Are there any specific risks I should be worried about?

I fully grasp all the details provided in the documentation, yet I find myself wondering if you might be willing to share any personal experiences regarding this specific procedure. It would be wonderful to hear about potential risks or the overall success rates from a first-hand perspective. In fact, I was curious—have you perhaps undergone the surgery yourself?

Hey, I haven't been through this myself, but my friend's brother was actually in Switzerland for treatment... He’s doing amazing now. He went there a few years back and they managed to get the illness completely under control. I'm not sure what else to tell you right now, but a close friend of mine is heading in for their procedure next week, so I can check back in later and let you know how everything goes. It might feel a bit discouraging that this isn't a standard, routine thing here in the States yet, but if it helps at all, knowing it's still specialized means you should definitely stay vigilant. Honestly, I don't think you need to be afraid.

I would be so grateful if you could share some details regarding his experience. I'm curious to know which facility he chooses for the procedure, as I am personally preparing to undergo mine next month.

It feels like forever since I last checked in here—it’s been quite a while, hasn't it?—so I was just wondering if there have been any updates lately. Has anyone actually gone through with the procedure recently? I'd love to hear about your experiences—the good, the bad, all of it. Also, what's the general consensus from your eye doctors? Are they telling you to go for it or play it safe?

I’ve actually had procedures on both eyes, and I am heading in for my follow-up appointment later today since it’s been about six months since my last surgery. I will be sure to check back in with all the details once I have them.

So, did you make it to your checkup? What’s the word from the doctor?

It’s been forever! Did you just fall off the face of the earth or something? 😬

I wanted to let you all know that I am back on my feet and doing quite well. I just finished up my follow-up appointment, and everything looks perfectly fine according to the doctors, though naturally, we will continue to monitor things closely moving forward.

Charles Cox60, it feels like an eternity since you went through your procedure. My spouse was just diagnosed with keratoconus yesterday, and we are honestly feeling a bit lost, though this cross-linking option seems promising—at least regarding halting the progression. Could you please share some more detail about where you had the surgery performed, what your prescription looked like, and how your vision actually feels now that the cross-linking is behind you?
Any guidance would be appreciated.

I was wondering if this kind of procedure is handled routinely within the US healthcare system, or if it's something you typically only find at private clinics? Also, does anyone happen to have an idea of what the typical cost for a procedure like this might look like? I would be so incredibly grateful if someone could share some insight!

I gave a clinic a call today, and they're quoting me about $700 per eye. That's assuming I pass the mandatory initial consultation first, which is basically to see if I'm even a candidate for the CL procedure—that part runs me $133. Has anyone here actually gone through with this method? I'd love to hear some real feedback on the results.

Hey guys, quick question—how many cylinders were you dealing with when you started looking into cross-linking? I really need some advice here. I’m only 18 and just got diagnosed with advanced keratoconus. Any info at all would be a huge help 🙂 thanks

I’ve been hearing quite a bit of feedback lately suggesting that most people aren't particularly thrilled with the results of this procedure, so if anyone here has gone through it and actually ended up satisfied, I would truly appreciate it if you could share your experience..
All perspectives, whether they are positive or negative, would be incredibly helpful to me as I weigh my options..

Thank you 👍

Carol Scott98 said:I’ve heard that most people aren't actually satisfied with this procedure. If anyone here has gone through it and had a positive outcome, please let me know..
I'm looking for all kinds of feedback—good or bad..

Thanks 👍

My brother went to see Dr. Šarica vinogradski about four years ago. He saw him privately at Visumed, since you can't really get this done through the standard US healthcare system.
Everything is fine so far; he had the procedure performed on both eyes. The underlying condition persists, but he goes in for regular checkups every six months. He hasn't voiced any complaints.

So, how much did the procedure end up costing him?

I was wondering if anyone here might have some personal experience with the cross-linking procedure, or perhaps you know someone who has undergone it recently?
👍If you could share any insights or details you might have, I think we would all truly appreciate the help.

Carol Scott98 said:so, does anyone actually have experience with cross-linking?? or maybe you know someone who’s been through it?
please share what you know, we could all use the insight👍

Hey everyone🙂
Just another guy dealing with keratoconus. I went in for cross-linking on my left eye at an Eye Care Center the day before yesterday... the procedure itself went fine. It takes about an hour and a half total, including showing up, the drops, waiting around, the actual thing, and then a quick check-up and some rest afterward. As soon as I walked out to the car, my vision started narrowing and I couldn't even keep my eye open... once I got home, things got worse, to say the least. A burning, aching sensation starts setting in, almost like a heavy weight is pressing against the eye... I'd suggest taking a strong dose of sleeping pills and just leaning into it. The longer you sleep, the better... I didn't drift off until about two in the morning. Woke up around 9:30 feeling like a brand new man, though it felt like all those horrors from the night before had finally retreated. Then there was the follow-up, which lasts maybe two minutes, more drops, everything seemed okay until evening... then the stinging and dull ache returned, but it subsided enough for me to sleep like a log. Woke up today and managed to get behind the wheel again, just for a short drive, a few miles, but it was doable. No major issues now. I'm using Tobradex drops and some artificial tears every three or four hours ($30 the tears and about 30 bucks for the Tobradex)... nothing requires a prescription. Just standard US healthcare. Well ladies and gentlemen, I hope I managed to give you at least a little glimpse into what cross-linking is actually like... greetings from the countryside.🙂

Hey guys—I’m headed into 8th grade soon and was wondering how long the recovery takes after cross-linking? Like, how many days am I gonna be out of school?

P.S. Just a heads-up for anyone dealing with keratoconus: make sure you get a Pentacam done (to check those corneal thickness differences)—you usually have to go through private clinics for that.
I'd personally recommend Optical Express. I've been wearing lenses for two years now since my diagnosis, and honestly, nobody at the local clinic even suggested further testing. I'm heading to see Dr. Sarica at the main hospital for a second opinion—and it's cutting it pretty close, too—because my cornea is getting thin, right near the limit where they can't even do the cross-linking anymore. That cutoff is around 350-400. If I'd known this sooner, I would've just gone ahead with the procedure already! I'm going in about ten days, and I'm feeling pretty good about it—fingers crossed everything goes smooth. Peace!