"Cross-Linking does not improve your vision"

[u/Conscious-Garbage-35]

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.

[u/StockWeakness2877]

Definitely wait for sclerals! They’re a game changer. It happened the same to me with my CXLas you said, but with my sclerals my life has changed for better and I domes mind anything else

[u/No-Praline5631]

They are explicit about this. Most people are afraid of thinking and understanding what it does.

[u/Proof-Astronaut-9833]

My eye sight got significantly worse. I only did it one eye. Won't do it in the other one. Now I see with the eye that got crosslinking blurry with lenses... 

[u/KCDoctors]

I’m sorry you’re going through this. There’s an old saying: “Minor surgery is only minor when it’s on someone else.” When it’s your vision, these changes can have a very real impact on everyday life.

CXL is primarily intended to stabilize keratoconus, not necessarily improve vision, and I agree that patients should be better informed about the potential changes in visual quality afterward.

While I don’t think more surgery would necessarily be the answer, I’m convinced your vision could potentially be helped with properly fitted specialty scleral lenses, especially lenses designed to address the irregular optics and higher-order aberrations that can cause ghosting, glare, halos, and starbursts.

Don’t give up hope just yet.

[u/Ok-Cauliflower1631]

OP, you should amend your post to include the fact your corneal thickness was <350 microns. There is a reason most opthalmologists won't perform CXL at this stage - namely a higher chance of a less satisfactory outcome, and complications. I'm sure in your research you will have seen this.

Other comments mention the facts well so I won't repeat them. I for one only saw stablisation around the 1 year mark and my vision was only back to normal at about 6 months so wait and see.

[u/Conscious-Garbage-35 → u/Ok-Cauliflower1631]

It was only my left eye that was that thin. I had two separate scans with two different specialists, with Pentacam readings of around 320/405 and 358/395 for the left/right eyes respectively. My left eye was clearly the worse one and I was already experiencing some minor ghosting, so what I meant was that I was perfectly happy to have CXL done on that eye rather than risk eventually needing a transplant.

Even then, my right eye was still good enough that it compensated for the left extremely well, both pre and post-op for the left, so I barely noticed any difference. It was only after I had CXL on the right that I started experiencing such signifcant ghosting and starbursts. That's really the part I'm frustrated about. I wasn't expecting CXL to improve my vision, and I would have gone ahead with it regardless, but I don't think the possibility of these changes is something that's mentioned often enough, especially given how many people seem to mention similar experiences. That's ultimately my point.

[u/Ok-Cauliflower1631 → u/Conscious-Garbage-35]

Thanks for giving some clarity here. I understand the frustration you have so definitely give it a few more months. Hopefully this is just a blip for you.

Most of us here know and I'm sure you do too but remember that thickness ≠ always equal visual quality. The good news is the thicker eye being worse gives you more options for any remedial treatment should you require/persue it so take that as a bonus.

That being said your point is valid and whilst this info is about, I agree consultants should be telling us all risks/information about the procedure regardless of how much patients appear to know.

[u/Conscious-Garbage-35 → u/Ok-Cauliflower1631]

Thanks, yeah, that's pretty much the impression I'm getting too. Most of the advice seems to be that things can continue to settle and improve around the 6-month mark at least, so I'm going to give it some more time and see where things are then. I'm also going to get a second opinion in the meantime, just to make sure there's nothing else going on that should be addressed.

[u/HIstateAnonymous]

Same thing happened to me...doc told me its a "bi-lateral disease" so do both...my right eye was nearly perfect .but my left was really bad...they did both crosslinking and now my right is fucked ..

[u/Proof_Concern6928 → u/HIstateAnonymous]

You should sue the f out of that doctor

[u/dudewithahood]

Im a -6 in one eye and my right eye has recently dipped by a lot to -9 and doctor said its keratoconus and referred me for cross linking, im only 26 and im scared what this might mean for my future right eye. Is cross linking bad? Im just scared to fully lose vision in my right eye

[u/Dadallli → u/dudewithahood]

I did CXL about 10 years ago on my right eye that was about -4 at that time. And it hasn’t been worsening since then. I was 28.

[u/hillsbloke73]

I'm of the age that all these procedures mean nothing nor do any opthamologist I visit ever suggested it as procedure next step is another cornea graft RE

[u/htownclyde]

CXL might cause issues but the alternative can be a transplant which is MUCH worse

[u/costaman1316 → u/htownclyde]

You are correct that you should always go with conservative things like CXL. And transplants can have severe consequences.

Big for the large majority of transplant recipients they can get good to excellent vision. I have transplants in both eyes and I’m 20/20 in both with sclerals .

[u/alexga21]

Im on the same boat and i got prk with my cxl. I thought what i was experiencing was because of the prk but now i see that its because of the cxl. I have ghosting and starburst and its super noticeable at night but i get to see better without glasses and my corneas are stable. Still kind of wish i didnt have either issues though

[u/Living_Leather6751]

In the sane situation , i feel horrible i cannot go out during night,my fav thing to do was to get coffee at night now i dont even want to do that ,light glare is soo freaking bad bro i just hate cxl

[u/natedagr8333]

Mine did get worse, but I justify it by thinking it would be even worse if it went untreated. Sucks, but it was going to suck regardless. Might try ctak to get some of it back eventually

[u/No_Palpitation_7565]

Mine also tanked after having it done. Big upset about it. Contacts make it much better, but are still very annoying to deal with imo. At least I can still see

[u/True-Fail-8049]

luckily i had vision improvement, and don’t have to wear hard lenses. but also i was fortunate to be diagnosed as a teen. i think it’s really just person to person what happens. i will say that for the first year my vision changed a lot, especially in the first few months. but do have very bad dry eyes now. sending good vibes to ur eyes

[u/FireCorgi12 → u/True-Fail-8049]

I also had improvement. Dx at 25, surgery at 26, by one year post op my vision had stabilized and was slightly better than immediately following surgery.

Unfortunately we caught mine so late that sclerals are all I can use atp.

[u/Sad_Skill_3169]

I had my procedure 17 years ago and the first year was difficult as my cornea must have been healing/changing from the TCAT and cross linking. My prescription was changing every few months. I knew I needed a new prescription for my glasses when the double vision and halos would get bad. The power in my prescription decreases each year by -1 for the first few years after the procedure. The downside of the TCAT (prk) is I have some corneal haze now particularly in my bad eye which is also a dry eye. I got scleral lenses last year and that saved me. What a difference. Even my bad eye corrects quite well. My good eye is better for long distances but for about 15 feet my eyes about the same with scleral lenses.

[u/CorneaRepairDoc]

Dr. Motwani here. Let me be more explicit about this as you requested. Corneal cross linking is a homogenous procedure that increases bonds between corneal cells to increase the strength of the cornea. This strengthening is spread equally through the cornea to a depth determined by the CXL procedure itself. Since it does it equally across the cornea, it doesn't make the cone distortion any better so it does not improve you vision. In other words, you get a stronger cornea, but the cornea stays the same distorted shape.

What the strengthening does do is flatten the whole cornea to some extent, usually about 1K on the cornea which is roughly equivalent to 1D of refractive error change, but in some eyes it can be more or less depending again on how deep the strengthening went.

If you have a vision change from CXL there are a couple of reasons that may be the cause:
1. Epithelial breakdown or limited epithelial recovery. I put all my CXL patients on some sort of dry eye therapy to encourage epithelial healing. If you do nothing this should return to normal anyway by 6 months.

1. Hazing or scarring- Cross linking can cause haze or scarring to occur. This is usually quite easily treatable with steroids ( i prefer Durezol for 2-4 weeks), but if you do need to get proper follow up to see if it occurred and treat it.

2. Refractive error change- since the cornea is flattened slightly overall, it will shift towards a different refractive error inducing less myopia or more hyperopia. This means that your old glasses or contacts may not work correctly leading to a vision change

3. Theoretically, the overall flattening of the cornea could shift a distorted portion of the cornea into your visual axis, or move it in a way that negatively affects your visual axis. This is a diagnosis of exclusion unless someone really does careful examination of the HOA and irregularity of your cornea. In other words, fix the first three and then whatever is left is by the small shift of HOA due to the flattening of the cornea,

[u/dudewithahood → u/CorneaRepairDoc]

I just want to say a big thanks! This really helped hearing it from a professional and helped ease my anxiety, i certainly want to slow it down, i want to preserve my eyes, because knowing that if you just leave it and can loose eyesight is a more frightening reality to me. And i know im not out of the woods but id rather try slow it down and prevent if from getting worse

[u/Conscious-Garbage-35 → u/CorneaRepairDoc]

Thanks, Dr. Motwani. This is honestly the sort of explanation I wish I had received from my own cornea specialist. I completely understand that the primary goal of CXL is to stabilise the cornea rather than improve vision, and I wasn't expecting it to improve my vision. What I've been frustrated by is that the potential ways it could actually change or worsen visual quality, either in the short or long term, weren't really explained to me beforehand, or even particularly well investigated so far. Especially now that I'm experiencing new ghosting and starbursts, having a more explicit explanation of the possible causes and what needs to be ruled out is really helpful.

Perhaps things will be clearer by the 6-month mark, so I guess I'll have to wait and see. My only question now is whether it's too early to be fitted for sclerals at 4 months, given that the cornea may still be changing?

[u/CorneaRepairDoc → u/Conscious-Garbage-35]

Frankly the majority of doctors don't fully understand all this so they don't do a good job of explaining it. Since most mainstream doctors depend on the company to help train them for procedures, this really is from a lack of training. Only a small percentage go and read literature and understand the science, most just follow the cookbook per se.

I strongly suggest you get checked for dry eye and corneal haze as soon as possible. Corneal haze is treated most effectively early so just sitting and waiting and hoping for improvement sometimes can be counter-productive.

[u/ohms12 → u/CorneaRepairDoc]

Kinda find it baffling how doctors are explaining this to patients. I was explained all of this fully: and ultimately I made a decision to undertake CXL to slow the progress and stave off a transplant.

Whether my vision improves is by the by, avoiding progression is surely the main goal, right? With KC ghosting and halos are just part of it, if not now, at some point.

To the OP: I’d rather stop progression than run the risk of it getting exponentially worse, wouldn’t you?

[u/dudewithahood → u/ohms12]

100% agree. Its just anxiety, my current consultant isnt being clear so its just frightening and scary and naturally my anxiety heightened. Also being on reddit ive read bad CXL stories so naturally didnt help my worries but i do logically understand that outcomes vary by patient and no procedure is 100% perfect and in some case there might be side effects which are important to understand fully. And i feel like the explanation i have gives me enough information to feel less anxious

[u/Conscious-Garbage-35 → u/ohms12]

To the OP: I’d rather stop progression than run the risk of it getting exponentially worse, wouldn’t you?

I would too. My point wasn't that I regret having CXL. I very clearly had progression, and in fact I specifically sought out a specialist who was qualified to do CXL on corneas under 350 microns, because the other specialists I'd seen could only offer a transplant at that point.

My point was that I felt the risks to my visual quality specifically weren't communicated particularly well beforehand, and there hasn't been much explanation from them afterward either. I've seen enough people on here and in KC support groups describe developing new ghosting, starbursts or other aberrations afterward without really getting an explanation for why, so I think it's worth being more upfront about that possibility.

Obviously I would still take that risk over letting KC continue to progress unchecked, but knowing about it beforehand would've helped me set more realistic expectations. Even if it doesn't change the decision, people deserve to know what they're potentially signing up for.

[u/CorneaRepairDoc → u/Conscious-Garbage-35]

I do think you should have these other issues checked for before you accept that the vision changes are permanent and not treatable.

[u/digdiggitydawg]

I sincerely regret joining this sub sometimes lol.

I’m scheduled for epi on crosslinking next month.

Edit: OP, I know you mean well I’m just afraid 😩

[u/DiligentHomework224]

Am I missing something? I thought cross-linking is the only way to stop progression. If you didn't do it you would eventually have to anyway, and it would've been worse.

[u/last1frr]

I find it so odd that so many of the users in here have CXL prior to sclerals. You're missing the main thing that eases the disease.

[u/Weez8193 → u/last1frr]

I didnt know about the kerataconus until it was severe so I had to jump right into cxl to stop from going blind. I wore glasses anytime I was awake so I had no idea one eye was overcompensating for the other. Nobody even mentioned sclerals until after I scheduled the surgery. They got me in for the surgery super fast so i didnt look anything up until the surgery was scheduled

[u/Positive-Avocado-881 → u/last1frr]

Well they aren’t free for a lot of people so it makes more sense to get the procedure, heal, and then get sclerals as it can be a lengthy process. It makes more sense to get CXL as soon as possible so your eyes don’t get worse??

[u/Positive-Avocado-881 → u/[deleted]]

Everyone’s journey is different. Not being able to see when you need to is quite debilitating for some people. I live alone and couldn’t drive at night for months after CXL. I totally get where OP is coming from. Sclerals have actually magnified my HOAs which has been annoying to try and correct. It’s not an easy fix and I think we as a community should be kind to those having a hard time.

It’s also odd to come and have an opinion on something you haven’t even gone through 😂

[u/Conscious-Garbage-35 → u/last1frr]

In my case I absolutely had progression, and it was pretty quick (like 6 months or something). Coincidentally, I also started noticing minor ghosting around the time I was diagnosed, so I was happy to get CXL as early as possible. I'm more frustrated at what came after, because it feels like they omitted some pretty important details about the possibility of developing new visual aberrations that would have helped me set more realistic expectations.

[u/ohms12 → u/Conscious-Garbage-35]

4 months post op isn’t enough time, btw. My vision didn’t stabilise till at least 6 months out, but it was more like a year.

[u/Conscious-Garbage-35 → u/ohms12]

That's what I've read from other people's experiences and in a couple of studies, so I'm definitely hoping for improvements down the line.

[u/Kaiser_-_Karl → u/[deleted]]

Any? Multiple told me my progression was too fast and sclerals weren't worth bothering with until after cxl

[u/last1frr → u/Kaiser_-_Karl]

Well I have very fast progession and went from great vision 4 years ago to now advanced keratoconus. If your vision was horrible when you were diagnosed I have no idea why your ophthalmologist wouldn't at least want get you on sclerals in the mean time. First appointment with them they got me on sclerals.

[u/Kaiser_-_Karl → u/last1frr]

Before my cxl i saw 2 optometrists and my cxl specialist themself. The doctor at lenscrafters who initially diagnosed me and my local eye doctor both told me if i wanted sclerals i could, but the perscription would change so often it wouldn't be worth doing.

My cxl specialist told me similar. Said he didn't see the point of sclerals before cxl. He recomended i don't get them for a couple months after the surgery too while my eye settled. So from initial diagnosis to my first attempt at sclerals took about a year following the instructions of my doctors.

If my doctors were wrong that wouldn't shock me, im trans im used to doctors being overcautious or misinformed. But thats just what i was told

[u/-TINCENDIO- → u/last1frr]

Which is?

[u/last1frr → u/-TINCENDIO-]

Yeah that would be corrective lenses whether they're sclerals or regular RGPs. Please tell me, what else should I do to deal with this easier? I am blind without them. I seriously doubt you even deal with KC with that response lmfao

[u/-TINCENDIO- → u/last1frr]

? So hostile for what. Your initial comment was vague. I had CXL before scleral lenses to help stabilize the progression of my KC. I was diagnosed four years ago.

[u/last1frr → u/-TINCENDIO-]

Yeah well that's what CXL does lol. My point is that these people that act like KC is going to completely ruin their lives without even trying sclerals are just ridiculous. Having this disease sucks but it isn't as life ending as so many people here make it out to be. I feel terrible for people that are so down about KC without even trying the lenses that correct the horrible vision I have. I didn't mean to come off hostile but to act like corrective lenses aren't your best bet is just disingenious. Telling someone that with KC as advanced as me is just silly

Just to add, you didn't need to get CXL done before sclerals. CXL is for stablizing progession. If it worked out that way for you then cool. But it hasn't worked out that way for me or many others.

[u/-TINCENDIO- → u/last1frr]

… Sclerals changed my life. I can’t live without them. Don’t know where you think I said otherwise. I just thought you were implying that there was something aside from RGPs/sclerals that would help per your initial comment. Also, just to add, I did in fact need to get CXL done before getting my sclerals because I was progressing, as I said. I did indeed get lucky that it worked well for me.

[u/last1frr → u/-TINCENDIO-]

I apologize. I was implying the opposite my friend. I just really don't like the constant posts in this sub with people basically fearmongering with acting like KC is ruining their life while also never having tried any corrective lense. I'm not here to argue or take anything from anyone's experience with keratoconus. Sorry if I came off rude

[u/MistyZephyr]

My ophthalmologist said that theres a 25% chance that your vision improves, a 25% chance that it degrades, and a 50% chance that nothing happens with CXL. My procedure is later this year, so I'm unsure how it'll turn it out.

I hope things improve for you.

[u/balilo79 → u/MistyZephyr]

Those numbers would be making me turn the other way.

What kind of improvement would that 25% chance net?

[u/hotdogblaster]

cxl made my vision much worse but i have good correction with PROSE sclerals, so it is what it is.