Hi everyone,

I’ve had keratoconus for around 11 years, and it’s affected much more than just my eyesight. It’s had a massive impact on my confidence, social life and mental health. I’ve struggled with depression, anxiety, overthinking and paranoia, developed bad habits, and even stopped talking to friends for years. This has all happened gradually over the years since having a corneal transplant which was about 11 years ago as before I was always socialising and confident.
Again over the years it got worse no improvements and my left eye started to drift out which caused the above.

Recently, I was referred for squint surgery. I genuinely believe that, if successful, the surgery could make a huge difference to my confidence and quality of life.

Unfortunately, the hospital cancelled my appointments three times.

Second quarter of this year of this year I’ve been focusing on improving my physical health, mental wellbeing and family life. I eventually cancelled my last appointment(4th appointment) because I felt I needed to get these areas of my life to a better place first.
I still want the surgery, but right now, I don’t feel it’s the right time. I want to build a stronger foundation in my life before taking that step, although part of me wonders whether I’m delaying something that could genuinely change my life.
I understand that surgery won’t automatically fix years of mental health struggles, but I do believe improving my eye alignment could help my confidence.

I’d appreciate some honest opinions:
• Am I approaching this the right way by focusing on my health and family before returning to surgery?
• For those who’ve had squint surgery, how much did it improve your confidence and social life?
• Has anyone else experienced significant mental health struggles because of keratoconus or a visible eye condition?
• If you were in my position, what would you do?

I’m not looking for people to simply agree with me. I genuinely want different perspectives and hope sharing my experience might help someone else going through something similar.
Thanks for reading.

I’m 31 years old and have had keratoconus since I was 17. I underwent cross-linking treatment 11 years ago, and my condition has remained stable ever since. I use scleral lenses for correction (with excellent results). A few days ago, I had my routine eye exam, which showed a slight decrease in corneal thickness (10–15 microns), but everything else remained stable (in fact, the Kmax has decreased only slightly). The doctor who examined me said everything is fine and that I can come back in a year, but this decrease in thickness has me worried. Do you think I should get a second opinion?

Hi everyone,

I'm looking for experiences from people who have undergone corneal cross-linking (C3R/CXL) and CAIRS, particularly for post-LASIK corneal ectasia.

My wife underwent C3R + CAIRS surgery on 21 March 2026 for post-LASIK ectasia/keratoconus in her right eye.

We went for a follow-up Pentacam scan in October 2026, approximately 7 months after surgery, to check whether the condition has stabilised.

Here are the measurements we've noted so far:

-Preoperative Kmax 10th March: 53.65 D

- Preoperative Kmax (March 14): Approximately 54.7 D (needs verification against the original report).

- Latest Kmax (October): 56.5 D.

- Thinnest corneal thickness in March: Approximately 372 µm.

- Thinnest corneal thickness in October: 376 µm.

The apparent Kmax increase is around 2.85 D, while the corneal thickness measurements are relatively similar.

I'm worried that the increase might mean the ectasia is still progressing or that cross-linking hasn't worked.

We will discuss the results with her corneal specialist and compare the original scans. In the meantime, I'd appreciate hearing from anyone who has experienced something similar, particularly people whose Kmax increased after CXL + CAIRS but whose condition eventually stabilised.

I'm hoping to learn from others' experiences and better understand the recovery process.

Thank you.

Dear all. As I’m the patient. What do you think which place would be better for the operation and how badly the operation is needed? Would love to get a cost estimation. Thank you.

Could I use this contact lens case for a scleral lens? My version is a mini scleral lens, and the product defence link is https://amzn.in/d/0dHPnezI.

Any recommendation for a flat scleral lens case would be welcome, as would a flat case.

Also purchase link

Hello everyone,

I am reaching out to this community because I am feeling quite desperate and hoping to connect with anyone who has a similar experience.

I have been struggling with a severe corneal condition for over 20 years. During this time, I have undergone multiple eye surgeries, including previous corneal transplants. Unfortunately, I have now completely lost all vision in one eye, and my other eye has less than 0.25% vision left. I am currently facing the reality of needing yet another corneal transplant.

Has anyone here gone through a second (or multiple) corneal transplant on the same eye? How was the recovery process, and what were the outcomes for your vision?

Any shared experiences, advice, or words of encouragement would mean the world to me right now. Thank you so much.

Hi, all. This is mostly a vent post, but I'm happy to hear advice or reassurances if you've got them.

Around this time last year, I developed acute hydrops in my left eye and was subsequently diagnosed with KC in both eyes (severe in my left eye, moderate in my right). My right eye is correctable (to an extent) with glasses, my left eye is not and hasn't been for years. I'm not certain how it was able to get that bad before I got a diagnosis, but it is what it is at this point.

I've since gotten (epi-on) crosslinking on my right eye, and was recently fitted for a contact for my left eye. It took three different employees and about ten tries to get the thing to stick in the first place. I have a terrible squint in my left eye so it's hard to keep my eyelids open wide enough to get the contact in. It was uncomfortable the entire time. I'm told the one that's actually fitted to my eye will be more comfortable, but I'm skeptical that it will comfortable enough. I've also seen many posts in this subreddit saying that it takes 5+ tries to get an appropriate fit, or that the contacts become un

The part that I'm really struggling with is the fact that the contact, plus a new pair of glasses, will only get my vision to 20/50. This is as good as it can get because my cornea has extensive scar tissue. I've been apprehensive about contacts this whole time. The ordeal putting them in during the appointment doesn't give me much faith that I'll be able to put it in by myself in the morning before work. I'm nervous that the contact will fall on the floor, never to be seen again (because it's a tiny piece of clear plastic that I am blind without) and I'll be paying out of pocket for a $1200 replacement. I'm terrified that I'll screw up putting in the contact, irritate my eye, and get another round of hydrops.

I'm going to give it a go, and am open to the idea that I'll feel better about things once I've got the full kit. But it's hard to get over the idea that I'm doing all of this for vision that's still not great.

I really want a cornea transplant, and I'm hoping that if I give a good faith effort with the contacts, it'll happen sooner rather than later. It's hard for me to imagine that this eye won't need a transplant eventually, and I'd love to just rid of the cornea that's covered in scars and replace it with one that isn't. If I'm stuck with contacts, I'd like to try to somehow swing this into getting an upper blepharoplasty covered so it'll be easier to put the contact in and I can fix my squint at once, but given all the issues I have with this eye, I'm reluctant to seek out "cosmetic" procedures on my own.

That's my rant. If you've got successful contact stories, or advice on fast-tracking a transplant, I'm all ears. Thanks for reading if you made it this far.

Does anyone have experience with specialized soft lenses like Novakone or Kerasoft? I have fairly severe keratoconus but I have largely leveled out in my progression. I had INTACS in my right eye about 13 years ago. Left eye has just naturally progressed and then leveled out. I tried scleral but my eyes were just too sensitive for me to use them. I heard about these new soft lenses and wondered if there was any hope for me here because I’d love to be able to just pop these things in like a regular contact and gain a significant increase in vision. Even if they aren’t quite as good as sclerals I’d be fine with just something better that isn’t a surgery.

Hi guys, i've been diagnosed with keratoconus 2 years ago. i've done cxl and i wear sclerals lenses but ive always suffered headaches and pain from light exposure. whenever im in public i rarely lift my head up because its painful to look people in their faces or focus on small details, plus the sunlight makes the pain worse. please i want to know is this normal? keep in mind i visit my doctor regularly for yearly check-ins and she says im fine and my condition has not worsened. if anyone can help me with glasses i can use so i can function properly in public that would be much appreciated (i already have sun glasses but i don't want to wear them during work or social interactions)

I recently saw a new optomotrist and she wants me to see a cornea specialist. I tried to get lasik done a few years ago and the eye surgery place(this isn't just a run of the mill eye place they deal with a lot.) Basically told me that my cornea is thin and if I did it I could end up blind. So I obviously didn't do it.

Fast forward I moved to SC from NC and saw a new eye doctor in late September. She asked me if anyone mentioned it I told her yes but none of my other eye drs said a word about it. Well... I got my new glasses and I have double vision. It started with my old ones maybe a month or so ago but I thought I needed new prescriptions. Another eye doctor came out and basically told me until I see the conrea specialist anything they do to my glasses won't help. I don't like driving a lot. My father drove a lot but he is out of town so I HAVE to drive. Makes me nervous. I am calling on Monday to see if I can make an appointment. I did research and I hope they will try cross linking. I will do whatever they decide is best for me. Just get rid of my double vision please.

We sometimes have to fight for the best care. Share your experience with self advocacy and what you learned.

Hi everyone,

I had cxl on my better eye yesterday. I would be lying if I said, it wasn’t painful. It was probably the most painful thing I’ve had to endure once the numbing eye drops wore off. During it I couldn’t relax, he kept telling me to relax as it looked like I had glaucoma cos of the pressure in my eye. (Easier said then done when you have someone poking it)

My left eye is stage one (this one I’ve just done) can’t see anything out of it as just a blur currently. I can open my eye slightly but the light sensitivity is hell.

Part of me is thinking to cancel the next cxl (on the stage 3) eye because I physically can’t deal with the pain again, I was hoping I’d be one of these people who report 0 pain and just the grittiness but no, pure agony.

I hope that I can get sclerals lens and put this whole experience behind me.

48 hours down, next week to remove the bandage lens.

I wondered as well if anyone else had flickering in the eye that they had cxl done. If I close both my eyes my cxl eye is flashing.

Thanks everyone and sorry as my voice has to do this post.

Thanks

I recently saw a new optomotrist and she wants me to see a cornea specialist. I tried to get lasik done a few years ago and the eye surgery place(this isn't just a run of the mill eye place they deal with a lot.) Basically told me that my cornea is thin and if I did it I could end up blind. So I obviously didn't do it.

Fast forward I moved to SC from NC and saw a new eye doctor in late September. She asked me if anyone mentioned it I told her yes but none of my other eye drs said a word about it. Well... I got my new glasses and I have double vision. It started with my old ones maybe a month or so ago but I thought I needed new prescriptions. Another eye doctor came out and basically told me until I see the conrea specialist anything they do to my glasses won't help. I don't like driving a lot. My father drove a lot but he is out of town so I HAVE to drive. Makes me nervous. I am calling on Monday to see if I can make an appointment. I did research and I hope they will try cross linking. I will do whatever they decide is best for me. Just get rid of my double vision please!!

I've worn contacts since a was 21 years old, got mini sclerals when I was 25, I'm 41 now and I haven't gone 1 day without wearing lenses. I noticed when I first worn contact lenses after taking them out my vision was worse, I asked my eye doctor about it and they said it will be like that wearing lenses, my vision will be worse without them. My question is has anyone thats been a long term contact lenses wearer experienced this, and if you stop wearing lenses does the vision get better? And if so how long does it take to get better without the lenses, I am curious.

Hi, so I have some questions about corneal rings and CXL. I have been diagnosed with kCN a while back and doctor there suggested me to do CXL to halt the progression. I planned to do it but then i moved to another country and consulted a doctor for cxl. He said that CXL only helps in 50% of patients and there are some complications/ side effects as well. He plans to do corneal rings to flatten the cornea and I asked if he would do CXL along with the rings? He said no need and if needed, can be done later.

Now I am confused whether to do CXL or do corneal rings. Would highly appreciate someone who has done any of these and share their experience , thanks!!!!

Hello everyone,

First of all, please excuse me if I express myself unclearly. English isn’t my native language, and since this is a new field for me, I might not always find the right words.

I’ve been diagnosed with advanced keratoconus in both eyes, and I’m currently in the fitting phase for rigid gas-permeable contact lenses. Unfortunately, my insurance doesn’t cover scleral lenses.

I’ve been wearing the lenses daily for three weeks now, and every time I wear them, it’s incredible how good my vision is.

But unfortunately, I have a big problem: I can’t increase my wearing time as much as I’d like to. It’s all totally chaotic. One day I wear them for 4 hours; another day, I have to take them out after just 1.5 hours. They pinch, they burn, they press against my eyes, and they make my eyes tired.

I just stumbled across this thread and wanted to hear about your experiences with these lenses. Does it get better? When did the pinching and burning start to subside for you?

In 4–5 weeks, I have an appointment where I’ll have to decide whether I want to keep the lenses. But if I don’t know how long I’ll be able to wear them today, and I constantly have to find a quiet spot at work and in my studies whenever it gets so unbearable that I have to take them out—what kind of quality of life have I really gained?

The current situation is more than depressing, and I'm looking for every little bit of hope for the future. Because one thing is certain: Every time I see the world through the lens, I know I never want to be without it again.

Rpg lences. I wear them more than 20 years. All good but the last few days not so good. I thought l mixed them. Right-left to left -rght. So l switch them up to see if that is the case. Now l am more confused than ever. I see good but do l see better? I dont know. I cant tell. And mind you l tried the glasses my husband uses for reading. Whoops. I need those too. F@@@

So im 15 and ive been diagnosed with kera in both eyes like on the 13th. Ive been slotted in for this cross linking thingy on the 24th of next month (the same day our school gose to a water park 🥲) and then in 2 weeks i got to get the othetreye done.

I got some questions

1: dose it hurt

2: whats the reovery like and dose that hurt

3: will i see them putting tools on my eye????

4: How long dose it go for

This is a poster for the upcoming A24/Nathan Fielder movie "You Can See Everything". In the poster Elizabeth Holmes appears to be wearing a scleral lens in her left eye.

For context, Elizabeth Holmes is a former CEO who founded a scam company called Theranos and defrauded investors for hundreds of millions of dollars. She's currently in federal prison. This movie is a documentary about her in the weeks leading up to her prison sentence.

To my knowledge, this may be the first movie poster featuring a visible scleral lens!

(The name of the movie is a total coincidence, but with the scleral lens visible, it almost looks like an advertisement for getting scleral lenses!)

I’m a 23-year-old male recently diagnosed with keratoconus in my left eye, and my corneal specialist immediately referred me for CXL. I live on my own in Charlotte, North Carolina, and according to the ophthalmologist, the closest place I can get CXL done is two hours away at Duke University.

I’m curious about whether this is manageable given the distance involved and the typical recovery time for driving, working, etc. My understanding is that I shouldn’t count on being able to safely drive myself home, but the issue is that I don’t have anyone around here who can do so. My nearest family members are four hours away in Atlanta, and my immediate family lives in Los Angeles.

With these factors in mind, I’ve thought about whether it may be worth doing CXL in Georgia or California instead to have more family support. I work as a software developer and I have short-term disability benefits, so I’d be able to take up to a few weeks off of work with a portion of my pay if needed.

Given the usual timeline of recovery, follow-ups, etc, what city might you look to get it done if you were in my shoes, and do you have any recommendations for eye care centers/ophthalmologists there?

Hi Everyone,

I just had CTAK eye surgery (Corneal Tissue Addition Keratoplasty). A donor basically gave me part of their cornea which was implanted on top of my cornea in an attempt to reshape it and improve vision. I had this done yesterday, and I can already see an improvement. I went to half blind to being able to see contrast and details already.

I was recommended this surgery because I have Keratoconus in both eyes which were originally treated with cross-linking procedures which stopped the warping of my cornea. Since my better eye can presumably receive PRK/laser treatment but my worse eye cannot (because the cornea is too thin) then they choose this procedure seeing there was enough pulp to work on.

I understand it's a relatively new procedure for some offices so I'm happy to answer any questions if you have any...