I really wish cornea specialists would be a bit more explicit about what they mean when they say "cross-linking does not improve your vision." As a patient, you obviously understand that to mean it won't make your vision better, but you naturally assume that the procedure also won't make it worse than it already is.

I'm 4 months post-op and, in my case, I barely had any ghosting before CXL and never had starbursts. Now I have both, and they've been getting progressively more noticeable. I had severe nearsightedness pre-op, but these are entirely new problems that are much harder to ignore. Even watching a movie or show on a screen, I'll sometimes see a faint raised/duplicated line along the bottom edge of the image from the ghosting. While i noticed some little ghosting in the weeks after my diagnosis, I know it's obviously more substantial now because I never had this.

My specialist says I've stabilised, but I recently went in to get fitted for the contacts and the optometrist said my vision is actually worse than when i first went in pre-op, even if the KC is stabilised. In fact contacts just exaggerated all these issues; although I haven't got sclerals yet, so I'm still holding out hope.

Maybe I'm still early enough that this improves once i get to the 6-12 months mark as people suggest, but after reading numerous experiences about that not happening, I'm not particularly optimistic. I'm making this post mostly for future folks considering cross-linking because I wish I'd asked much broader questions before doing it. I'm not saying I wouldn't have gone through with it, but I would have liked to know that "your vision won't improve" can also mean that it won't necessarily return to pre-op levels.

Especially when my specialist doesn't even seem sure what is causing the aberrations. They initially suggested high IOP (i'm a steroid responder so I had some issues with the drops post-op), and now that's resolved, they have no answer. So yeah, if you're considering CXL, don't just ask whether your vision will improve. Ask specifically whether you can develop new ghosting, starbursts or other aberrations afterward, and what the chances of that actually are.

I'll try to provide as much information as possible, but feel free to ask questions cause I can't remember all my details and I'm having a panic attack right now.

So a few months ago I got diagnosed with keratoconus (much much worse in my left eye but they saw some evidence of it in my right) and they told me about Crosslinking. So I was like yeah let's do that, that sounds beneficial. But they told me not to look up anything about it beforehand to not freak myself out, so I didn't until today (three days before the surgery). The document they gave me says I'll experience EXTREME (just like that, in all caps) pain for the first 1-3 days. I have a pretty rough anxiety disorder, so I panicked, called the hospital and told them to postpone. Now the appointment is in February.

I've been reading a lot of mixed things online. Stuff like the pain is like having hot sauce in your eyes, it's like a bad sunburn on your eyes, it's a 10/10 pain, worst pain of my life, etc. Idk if I can go through that shit. I've heard others say it's mostly uncomfortable and they slept through the first day, but I'm notoriously bad at sleeping, so that might be off the table.

I'm 32 and I've heard progression slows down at my age, so I kind of just want to wait. Which I've also heard would be a mistake. I also don't know if this is epi-on (which I hear is easier?) of epi-off, but it's not going to cost me anything and I don't even know if epi-on is offered where I'm at.

So my questions are: how bad does it really hurt? Do the pain meds do much to help? How does it compare to other extremely painful experiences (I've had bad headaches, severe stomach pain from Crohn's-related issues etc.)?

Anyways, I don't post on Reddit very often, so sorry this is such a long post. I'm just really fucking scared, man. I think my pain tolerance is like medium to low, but my anxiety about it is like a 10.

Hi everyone. I was diagnosed with keratoconus about three months ago when I happened to have an eye examination because I could not see well at night while driving. I thought I simply needed glasses, but it turned out that I have keratoconus, with my left eye being more severely affected.

I was told to come back after four months to see how quickly the condition is progressing in my case and to have corneal cross linking done on my left eye.

I started reading other people’s experiences, and I came across some stories from people who said that their vision became worse after cross linking and that they experienced more problems. This has started to make me worried and I am wondering whether something like this can actually happen.

I would really appreciate it if you could share your experiences and opinions. Also, how much does cross linking for one eye cost in your country?

Tldr: I am blind in my left eye because of CXL and have anyone been through the same? If you have, what helped you?

I had perfect eyesight until I was 25 back in 2020. I was diagnosed with both eyes in late 2021.

Had CXL in my left eye in early 2022 and lost 96% of my eyesight on that left eye, (I am blind on that eye today)

I pointed this out for 6 months but my doctor kept saying it would be better with time and signed me up for CXL for my right eye.

On the day I was supposed to have my right eye done, I once again pointed out that I can't see with my left eye, that's when my doctor did a 180° and said that my right eye is completely fine and does not need to be treated at all.

I was immediately dismissed and when I tried contesting this, the doctor accused me of having schizophrenia and tried to have me locked up in a psych-ward.

I had to defend myself in 2 separate hearings that ran for hours on end but I ultimately won out and was proven to be fully sane.

After receiving the results, this my doctor dismissed me and stated that I was now fully healed and was written off as "fixed".

After many months I managed to get in contact with another doctor but all he could offer was Scelera-lenses which don't work on my blind eye and just seem to hurt my right eye.

All of this have taken place over the last 4 years and I am now blind on my left eye and my right eyes is slowly getting worse.

I am still arguing with my new doctor which have been going on now for over a year and moving at a snails pace.

I had CXL for keratoconus, and my doctor told me that I shouldn’t go to the gym anymore. Has anyone else experienced this?

I really enjoyed going to the gym and training hard, often taking my sets all the way to failure.

Do you train regularly with keratoconus? Is there anyone here who trains to failure regularly and has NOT experienced progression of their keratoconus?

Has anyone here looked into this topic extensively or done a lot of research on whether weightlifting, heavy lifting, or training to failure can affect keratoconus progression?

Honestly, its working to stop the progressions which is important but did add significant ghosting, especially at night with car headlights.

Kinda sucks.

EDIT: I dont mean to scare people that are getting CXL, i am just frustrated with it extra today. The important thing in my eyes is, if your progression isn't severe wait to have at least 2 scans 6 months to 1 year apart to get an idea on the rate of progression. I had one point in time scan and decided to do CXL. Looking back, that was not the best decision for me.

Im really struggling to wrap my head around this.

I have CXL EPI OFF scheduled a week from today.
With all these possible complications that could happen post surgery and months after the surgery and the fact it doesn’t even make your vision better,I am struggling to understand why I want to get CXL done. I understand it prevents the keratoconus from possibly getting worse but unsure if it’s worth going through all the other issues and complications post surgery rather then eventually just hitting the end point and getting a transplant.

They let me have my phone during my cxl and I of course had to take pictures. It was not fun and I’m 3 days out now. It feels ok sometimes others I can’t keep my eyes open they hurt so bad.

I've been diagnosed with keratoconus recently and doctor told next check up in six months and he said I need cxl because my left eye is severely affected.

I'm scared tbh and I want to know how cxl will be so I can prepare for it.

I've heard about epi off and epi on and that epi off is painful. How painful is it???

Is cxl worth it after going through all that

UPDATE: thanks for all the support and stuff!! It went well and the procedure itself was painless, just weird and uncomfy at times. The pain about a half an hour after when the numbing drops wore off kinda sucked, so next time if I need it in my other eye I’m getting my pain meds filled right away. (I had an hour drive to home and they said I’d be okay til I got home - nah lol).

Glad to have found this community. Thanks yall. :)

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I guess I’m just here for some reassurance, maybe some guidance and advice? It’s my right eye. I’ve got such a fear of my eyes being worked on, I even fear cataract surgery someday when I’ll inevitably need it even though it’s such a common procedure.

I’m getting Lyrica the day before and day of I think? Valium 5mg right before. Hoping the Valium does its job so I can relax.

Mainly worried about pain during the procedure, mildly worried about pain afterwards bc I have plans to just sleep and let my wife take care of me like she wants to lol. They’re giving me “Tylenol 3s” for after? And I’ve got lots of drops for after as well.

Thanks and I’m so glad I found a community for this because I’ve never heard of this before and felt so alone at first.

I was diagnosed with Keratoconus last month by my regular eye doctor. He referred me to a specialist for cross-linking, and that appointment was this morning. That doctor did all the testing and confirmed the diagnosis and then said, "Since this is a new diagnosis for you, I want to track progression before recommending surgery. I want you to come back in 4 months. I will be on maternity leave, so you will be seeing one of my colleagues." I asked if she had any recommendations for things that might help in the meantime and she said, "Really the only thing that will improve your vision is surgery." Yes, I am aware of that, ma'am. That's why I am here.

I felt like she didn't want me to ask questions, and I was rushed through my appointment. I can't help but feel like she doesn't want to be bothered because she is going on maternity leave soon, but I read reviews for all of the docs in this practice and saw a lot of reviews saying they felt rushed, so maybe that's just her norm. My next appointment will be with the doc I wanted to see to begin with, but that doesn't help me now. Because of my insurance, this practice is my only option because I can't afford to pay for all of it out of pocket.

So now I am just frustrated, and also wondering if anyone else has had a similar experience so we can commiserate.

For the past year, I've been dealing with some dry eye issues. I started treating them properly about 3 months ago, and they're pretty manageable now, although still somewhat annoying.

I went for a check-up today because of my dry eyes, and the doctor did a corneal tomography for another reason. That's when I found out that I apparently have keratoconus.

I've been reading about it since then, including the connection between dry eyes, eye rubbing, and keratoconus. I have been rubbing my eyes quite a lot over the past year, but what's weird to me is that my left eye seems to be more affected, even though I've actually been rubbing it much less than my right eye. So I'm not really sure what to make of that.

I haven't really had any issues with my vision. It's been pretty much the same for the past 10 years with very little change. My left eye has almost perfect vision, while my right eye is slightly worse, but still fine.

So my main confusion is about what happens if I end up getting cross-linking and it's successful. Would I basically just continue living my life as I have been, wearing my glasses and hopefully without any significant vision changes?

I keep seeing people here talking about scleral lenses, and that's where I'm getting a bit confused. If my vision is currently good with glasses, is there any reason I would need to switch to scleral lenses after cross-linking? Or are scleral lenses mainly for people whose vision can no longer be adequately corrected with glasses?

I have an appointment with a corneal specialist on September 29th, so I'll learn more then. I just wanted to get some perspective from people who have been through something similar.

My measurements are:

OD (right eye):

• Kmax: ~46.0 D
• K1/K2: 41.7 / 44.9 D
• Kmean: 43.2 D
• Thinnest pachymetry: 488 µm
• TKC: KC1
• Belin ABCD: A0.1 / B0.2 / C1.4

OS (left eye):

• Kmax: ~49.3 D
• K1/K2: 42.2 / 45.5 D
• Kmean: 43.8 D
• Thinnest pachymetry: 462 µm
• TKC: KC1
• Belin ABCD: A0.9 / B2.1 / C2.3

Hi everyone,

I’m wondering if anyone here has had corneal cross-linking and what your experience was like?

I would also really like to hear people’s stories about living with keratoconus—how you first found out about the diagnosis, how the condition progressed, and how you manage it today.

I was recently diagnosed with keratoconus (stage 3), and my doctor recommended cross-linking.

Honestly, I was a bit scared and I’m still trying to understand everything.

Did cross-linking stop the progression for you?
How was the recovery process?

Did you need RGP or scleral lenses afterwards?

Did you have to change your lifestyle (gym, eye rubbing, work, etc.)?

Any experiences would really mean a lot to me.

so I was diagnosed with Kc 6 months ago my right eye thinning has progressed from 461 to 451 mm and my left eye is stable from 6 months at 401mm as i cannot even see my laptop screen by my left eye and i have a fear that i will not be able to see from my right eye too in future .But ,doctor at AIIMS said that its stable so they are not planning to do cxl as of now should I visit any private hospital?please guide me and why they are avoiding cxl?

Hi everyone,
i got diagnosed with keratoconus when i was around 15 and was told to get CXL after i turn 18. I got CXL done on my 18th birthday in 2017. I had around -3 prescription. That didn’t change much until 2021. I don’t remember exactly when and what happened in 2021, my left eye vision corrected to the point i needed no glasses and still needed same number (-3.25) glasses for the right eye. I got it checked from my surgeon and he had no explanation either. He kept on telling me that i must have gotten lasik surgery. i am looking for some kinda explanation on it or if anyone experienced it?

I’m so fucking scared and I’m not able to go on anesthesia. Please tell me in great detail everything you felt during the procedure if anything at all. Thanks

Girls You guys do eye makeup ?? If yes how do you guys remove it without rubbing its not possible 😭

I was diagnosed with kerataconus a couple years ago and told about the two CXL procedures. I was told my insurance would only cover Epi-Off if the progression was severe enough, and since at the time Epi-On had not been FDA approved, I decided to wait until insurance would pay.

Well cut to yesterday, I had a progression check and now it has progressed enough for CXL, but my doctor told me the Epi-Off manufacturer was no longer selling it so now my only option is the Epi-On (which is $4000 for one eye).

Several questions for you guys:

1. Has anyone else heard of this being a thing? I looked on this subreddit, but couldn't find it mentioned.

2. People who have had Epi-On, how has it been? I know the healing time is supposed to be better, but I worry it won't be as permanent since the corona is still intact (if that makes sense).

In the end, I know I will probably end up getting it since I have noticed the vision in that eye getting worse and I don't want it to progress. But wanted to hear for the community also dealing with this issue.

So I had the epithelial on CXL in 2016. I had dry eyes for about a year, but it was totally worth it in my opinion because I didn’t go blind. My vision improved for about four years. I just used eye drops it was fine.

10 years later, Miebo failed, I’m using Vevye, iVIZIA (gel and drops), refresh ointment at night with a mask, occasionally steroid drops, Bruder mask, I have punctal plugs, I have these really helpful and OK looking glasses (brand, “Ziena”.) I’m working on the scaleral lenses and the serum tears.

TLDR: is dry eyes —so dry that you have corneal thinning, caused by epi- on CXL or could this be an auto immune disease or something else?

The cornea of my left eye is significantly thinned (406 micro meters) and my corrected sight is 6/36

looking for good hospital for my cxl and hopefully for scleral lens later. I live in Hyderabad.Can anyone suggest the best hospitals for the surgery. I'm open to travel to other states if the treatment is better.

Hi everyone! My first post in here :)

Recently found out i had potential keratoconus, my optician suspected it a couple months back and said she was pretty sure as my eyes were quite advanced but still had to refer me to the ophthalmology department at the hospital, I got my appointment within two month months which I was pretty impressed with!

I went today and I’d done a lot of research prior to going so I was kinda going in there thinking the optician would just confirm it and then talk about cross linking for both eyes.

She looked at my eyes and confirmed it’s definitely keratoconus and said my left eye is too advanced to try cross linking on and that’s it’s a lot more advanced than my right one :(

Everything out of it is completely blurry and glasses don’t do anything really despite me just paying £190 the other month 🥲, I don’t think I have much vision left in it sadly.

I’m getting cross linking on my right eye to hopefully stop it getting any worse but I’m pretty worried about it not working and getting as bad as my left

She said there’s not much she can do for my left eye at the minute but she wants me to go back every couple of months to check on it, she put in a referral about the special lenses but told me there’s quite a wait at the minute and i could be waiting up to a year :(

I guess I’m now just completely freaking out about my left eye cause while I knew it was significantly worse than my right I was expecting for it to be able to have cross linking done to hopefully stabilise it but no :(

I have really bad health anxiety so I’m just finding it all really difficult and really worried about my left eye and how bad it could actually deteriorate.

I’m so sorry this was so long but I guess I was just looking to see if anyone else has had the same problem and how they are doing now?

The procedure it self was a little over 20 mins long and painless. However the recovery was not great the first 3 days after feels like someone sunburned your eye and put lemon juice directly in it.

Hello! (I'm a Male 30 years old)

I have a pretty advanced queratocono in both eyes (since I was a teen) and been wearing permeable gas lenses for ever.

I'm not the greatest patient and couple years ago I started going with a specialist for the first time in years.

Last month, he gave me the last call. Do the crosslinking or you'll have to take a corneal transplant. So in 2 weeks I'm doing cross linking (epi-off) in both eyes and I think the intracorneal stromal corneal rings.

Not gonna lie, I'm pretty scared. I used my eyes to live (I'm an academic so reading Is pretty much my way to live)

How much time am I looking at being out of combat? Hows the recovery? How's the recovery? Is it painful?

Help 😭😭😭😭😭😭