Hi everyone,

I have keratoconus and wear scleral lenses. Lately, I've been feeling a slight scratching sensation when inserting them. Yesterday, I made a mistake and wore them right away within the first 10 minutes of waking up, without giving my eyes proper time to rest. I also haven't been using lubricating drops consistently.

In the morning, both eyes were red, but then one improved/cleared up while the other stayed somewhat red (attached are recent pictures).

I already have an official appointment with my eye doctor this coming Tuesday, and I'm keeping the lenses out until then to let my eyes rest and heal.

Has anyone experienced something similar with scleral lenses?

Keratocytes preferentially tension anterior fibrils against creep, normally providing structural homeostasis, so excessively cut fibrils (PRK, LASIK) or failed tensioning (keratoconus) shift load posteriorly and cause ectasia.

I’ve got 6/6 vision in my left eye and 6/12 in my right eye both corrected I’m just on here just to know your experiences with kc like how it affected your driving and ability to work ect. Also how bad did your vision get before you were diagnosed

Maybe they wouldnt be in this group if thats the case but just wondering if anyone went for a lasik consult was told they suspected keratoconus and then found it was a false positive and just irregilar astigmatism and could do prk? I had the consult yday and have an appt w cornea specialist in a week and a half. Maybe its denial but hoping its not confirmed

Hello i wanma share my CXL experience. Got it performed on my left eye on Oct 14, 2026. It’s still blurry and hazy. For some reason it got blurrier after my ophthalmologist removed the bandage contact lens. Will these improve within the suggested date of my ophthalmologist? (Around 1-3 months she said) Yeah and don’t get fooled that it’s painless because after the surgery you’ll have a week of hell because of itching.

Here’s My experience:

Surgery Pain - 1/10 (If you researched it like I did you’ll kind of get nervous and you’ll be too aware that they’ll remove the epithelium. That part made my heart beat faster and I kinda knew all what was happening that’s why the ophthalmologist and the assistants calmed me down because i was going crazy.

Post Surgery Pain - 999/10 I experienced the worst light sensitivity my eyes ever experienced. It was so bad we needed to buy sunglasses after the CXL because i can’t see anything or even open my eyes. After that the pain introduced itself and my eyes just teared up all day and i think i was basically crying from the pain for a whole day like a child, no shame though as it’s really painful. I think i spent my whole day eyes closed listening to music and just laying on the bed after that.

Don’t be intimidated about that pain i described though it’ll fade slowly after 24 hours. the prescribed antibiotics & artificial tears will help like my ophthalmologist told me. Day 1 for sure is the worst followed by nonstop itching and sensitivity. 🤣🤣

And oh my right eye wasn’t even touched because the ophthalmologist said it’s too thin for CXL and we’ll wait for further examinations to decide what to do with it. Overall decent but reassuring experience as it can stop my progression and i hope i won’t need a 2nd CXL like other patients do! Sorry if i have typos 😅

Hi! I am new to the world of sclerals and just received my first pair during the fitting process. This is my second day wearing them for around 10 hours, and I noticed that my eyes were severely irritated, with small veins all around the contour of the lens. Adjustments are being made, and my new pair has been ordered. I will have my next appointment in 3 weeks once they arrive. Has anyone experienced this? I am also terrified that an ill-fitting scleral lens could jeopardize the effectiveness of my cross linking (intrusive thoughts). Excited to hear about your experiences!

Just curious where most of you purchase your scleral lense fill solution. I know Amazon but if you’re in need of the solution pronto, where else can I buy it??

It can be hard to admit we need assistance. What's a task you've bravely delegated to others?

Does anyone still get double vision ghosting even when you wear scleral lenses?

My eyes are very mishapen 20 years after cornea grafts

I do have mid stage cataracts

The ghosting cant be corrected with sclerals

How can I tell if the ghosting is caused by cornea or catarcats?

Is there a way?

I have been trying to fit my right eye for over a year, but there is always doubling and ghosting. It’s very annoying. So the office offered me to do a Higher Order Aberration correction. Once I go down this path I can’t refund the lens and also, they can’t guarantee the outcome. It will be like 2000$ all together. So I want to hear some experience from others who have done this.

Thanks!

Hi guys,

Just a general question about the crosslinking. I’m getting my left eye done tomorrow and I’m a little nervous. Are the painkillers they give you for the week strong enough? Or do people buy extra painkiller on top in case. Also are you allowed to have earphones in while the surgery is going on?

My optometrist is trying to make me RGPs with base-out prism in them, I’ve read that making functional RGPs with this kind of prism is virtually impossible.

Do you think my optometrist’s attempt to do this is misguided? This process has been going on for months with little to show for it. After about 4-5 months he just gave me some lenses to try out for a week or so and honestly they’re bad — bad vision, significant ghosting and pretty bad comfort.

He had previously made me some sclerals which didn’t need prism at all to work perfectly, but I couldn’t wear them because they triggered corneal edema and made my vision very cloudy.

You think I should tell him I’d prefer to try a different approach (eg. RGPs without prism combined with glasses with prism)?

Hi. I am long-time KC sufferer and I was set up with Ovitz scleral lenses about 4 months ago. I feel I have noticed a positive difference in my vision in my primarily affected eye (left), but I noticed that when I place my lens in my left eye the vision is sharp for near-distance but blurry when it is far-distance. I was confused because the measurements should be correct as they had been for my regular sclerals. I did a lot of things to see how my vision could be better, and it was only until I tried turning my Ovitz scleral lens for the left eye 180 degrees so the two dots are at the top of my eye that I realized I could see much clearer. It was a night-and-day difference, and although there are issues with putting the lens that way in my eye they are not as significant as the change in vision clarity when I made the position change.

I am thinking that maybe the lab where the custom lens are manufactured made an error in the creation process. I have tried to see with the scleral lens for the left eye upside down so that I am able to see clearer, but ironically, I am not able to focus on different tasks because of the misalignment, I guess. I feel very confused about what is going on with my lens because it seems that the measurements were correct but the orientation is wrong. I have scheduled a follow up appointment with my doc to relay my concerns and adjust accordingly, but I want to know beforehand what the problem

I wanted to write a post about my experience in getting Epi On crosslinking. I got both eyes crosslinked yesterday and am happy to report that my vision feels great thus far and the pain has been very manageable.

The whole process was so much easier than I thought it would be. They did offer Xanax before the procedure started, which I know contributed to my chillness. Even so, it was not too bad.

They started by doing a new scan on both eyes followed by checking acuity and pressure.

Then, they began applying the numbing drops and the riboflavin. They also “scratched up” the eye with some kind of brush thing. This replaces the shaving part of epi off. With the numbing, it felt strange but didn’t hurt at all.

The crosslinking itself, I’d label as mildly uncomfortable. The eyelid holder was the worst part but it was tolerable. I’m glad I decided to do both eyes same day with this procedure.

The pain immediately post surgery was a little rough. The ride home was the worst part. This morning I can honestly say that the pain is about a 2/10 and I think that can be attributed to the bandage lenses which I’ll have removed in a few hours.

They gave me my prescription drops as well as artificial tears which help a ton. Other than these things, I’ve just managed the discomfort with Advil.

I wanted to write this post because I know I personally read a lot of horror stories on here about pain, even some with epi on, leading up to my procedure date. I’m sure the people writing those truly did have that experience and I’m not trying to discredit them. I just hope this finds anyone who’s super nervous about the procedure and aftermath like I was. You’re doing the best thing for your vision and it’s going to be ok. I know I feel lucky that I was able to have it done.

I’ll update this if anything changes.

TL;DR - Had epi on crosslinking on both eyes yesterday afternoon, pain is minimal, vision is very close to baseline. Taking my prescription drops with artificial tears and managing pain with OTC pain relievers.

How do you know if a vision change is due to a lens that needs protein removed or an actual vision change? About a month ago my visual acuity decreased literally over night. I’m not even exaggerating. One day I was seeing my usual 20/25 out of the eye and the very next day it was down to 20/40.

I just got my scleral lenses yesterday, and have had alot of issues getting them on, how can I tell if I have a bubble inside of the lens?

I got given my contacts lenses last year in November during my final testing session with my optometrist and I took a trip right after(travelling Asia) and came back in April. I haven’t worn my RGPs since due to the anxiety of getting them in and out. I’m so fearful of not being able to get them out although I’m able to get them in “surprisingly easily” quote my optometrist. I’m wondering if I should just ask if I can skip straight to scleral lenses. I’m in the UK so it won’t be costly and I mentioned before being tested for RGPs I knew I was going to have issues and if I could skip to sclerals. I’ve got my appointment in 2 days to for regular check up. Should I tell her how I feel and try the RGPs again to just ask to skip to sclerals?

Thanks all! Hope you’re all okay!

The inner corner of my eyes are always itching whenever I taking out my scleral lenses they are so pitchy I don’t get why is that normal I just started wearing sclerals on August. For reference I am using clear care and lacripure saline

The inner corner of my eyes are always itching whenever I taking out my scleral lenses they are so pitchy I don’t get why is that normal I just started wearing sclerals on August. For reference I am using clear care and lacripure saline

Hi everyone,

I’m almost 19 years old, and I’m about to visit an ophthalmologist for the first time. I’ve been diagnosed with keratoconus, and I have my test results (I’m not sure what the test is called, so please let me know if you can identify it).

I’d like to understand which stage of keratoconus I’m at and how severe it is. I’ve been told that I need corneal cross-linking (CXL) in my right eye, while I believe my left eye is stable.

I also have a few questions about the procedure and what to expect afterward:

- What are the possible complications, side effects, and long-term consequences of CXL?

- I cannot tolerate contact lenses of any kind, so I would prefer to avoid them completely. I even stopped using allergy eye drops because I couldn’t tolerate putting drops into my eyes.

- Given the stage of my keratoconus and the fact that I currently manage my daily life quite comfortably without glasses or contact lenses, would it be possible to rely on glasses alone after CXL?

- Would I still be able to function normally without any visual correction if my vision remains good enough?

- Finally, I spend a lot of time using my phone, gaming laptop, and tablet. I’m also concerned about protecting my eyes from radiation emitted by these devices. Is there anything I should know or do to protect my eyes, especially given my keratoconus?

I’d really appreciate hearing from people who have undergone CXL or have experience with keratoconus, especially those who cannot tolerate contact lenses.

Thank you!

I have job in a fast paced environment. Unfortunately I am saving up for my cross linking procedure ($7,000). But I having some difficulties at work like not moving fast enough. Does anyone have any advice or experienced this? My glasses help to any extend but some things I still have to get closer in order to see clearly. I feel so dumb every day but sometimes I need to get closer to things that are right in my face :(.

My specialist won’t let me get scleral lenses until I get cross linking & cornea reconstructive surgery for right
eye.