r/Keratoconus

I tried scleral lens for the first time today..
it felt uncomfortable for the first few minutes and then it better and almost like its not there after some time .. i could only feel it sometimes while blinking but I didn’t feel any pain when it was on .
But after removing it after sometime my eyes started watering and it was uncomfortable.. is it normal???

I have been having a hard hard time getting my eye in I have been trying everyday but most of what I can do is wasted saline and I sometimes get it in how do you guys get them in so easy (I’m new to this)

Hi everyone,
I’m looking for some advice or experiences regarding military service and Keratoconus.
I have Keratoconus in both eyes (Stage 3 in one eye, and progressing from Stage 3 to 4 in the other). I have already undergone Corneal Collagen Cross-linking (CXL) on both eyes and have had Intrastromal Corneal Ring Segments (ICRS) implanted.
My doctor has told me that due to the severity of the condition and the presence of the rings, I am medically unfit for military service. However, I wanted to know if anyone here has experience with this. Does having these procedures usually disqualify someone from military duty? Are there specific risks with ICRS and CXL that military boards generally look for?
thanks

Hello all,

So I have keratoconus since 17 years or so. I am 45. Collagen cross linking was done 13 years ago. Been on glasses ever since . Recent years I was introduced to scleral lens options.. went to three reputed clinics but the trials have gone unpleasant.. my eye gets inflamed and hurts and then we just let go off the process. I know it’s a trial and frustrating but my eyes just seem to not like it. I was asking doctor what are my other options . Apparently I am 20/40 in my right eye and even with glasses there can’t be much correction there. I am 20/60 on my left eye and with glasses they can get to 20/40. I am just thinking of living with glasses because lens is just not seeming to be an option for me .. thoughts?

When I first was fitted with this doc my vision in my right eye went to 20/20. However it turns out that my sclera lens needed an adjustment. Next lens brought my vision from 20/20 to 20/30. Doc didn't seem concerned and said that's the correct fitting but didn't do a good job explaining why it got worse and did not stay the same.

He recommended me for Cross linking. Told me my vision my change and I may need a new prescription on my lens after. I had the cross linking done with a different Doc. Upon the follow up after the procedure they recommended me for a new lens since my eye changed for the better after the procedure. I go into my sclera lens doc and he's says he's surprised they recommended me for a change in prescription. I said you also said I may need a change after the cross linking. He said that's not right bc the lens sits over the cornea an in essence makes a new artificial cornea so the underlying vision of the eye doesn't matter. I then asked why the lens has a prescription on if it is just there to bend the light correctly into the eye. He the proceeds to use the equipment they use for your prescription were they say what looks better. 1, 2 or 3. I'm sorry Idk what it's called. However I still have my already prescribed lens in when he does this instead of the lens they give you with no prescription in when you first get fitted for a lens. My vision did get noticeable better on 3. He prescribed me a new lens. It just came in and my vision is worse then the one I just had. BTW my vision went to 20/40 after the cross linking with the lens on instead of 20/30.

Mind you I've also been told my keratoconus hasn't gotten any worse.

This just doesn't seem correct to me. By prescription are they just referring to the fitting. Or do these lenses have a prescription on them. Idk something just seems off with this.

I apologize for any inconsistencies or spelling errors. I'm at work and do not have time to prood read and edit.

Hello everyone , i had a tcat ( similar to Tprk ) with cr3 surgery around 40 days ago before the surgery my vision is around 6/12 and right now it is around 6/24 with ghosting and tripple image my vision is clearer than before but ghosting is presistant , so my question is how much time dose it take for vision to return to baseline as same as prior to surgery i had no cornial haze after the operation but i think improvement of vision is halted idk what to do what if it never return like it was before the future scare me very much dose any one else gone through similar operation can anyone give me insight about yhe recovery timeline and any supliment recommendation

Has anyone got intacs after Cross linking? Did it improve your vision ? Or just a waste of money

I've been using Clear Care (sometimes the Walmart knock off) and have been reasonably happy with it.

Lately, I've had trouble with the solution boiling out (for lack of a better term) of the case. By the morning, half the solution is gone and the top half of my lenses are sitting high and dry - out of the solution.

Anyone had issues like this? I think this peroxide cleaning routine is pretty good otherwise.

Hey gang, I’ve got my cross linking surgery on Friday and I’m absolutely shitting myself. I’ve done the silly thing and been reading all the horror stories about how horrific it is afterwards. Can anyone share any tips or advice on how to make it somewhat bearable during/after the surgery? I’m already dreading the boredom I’ll have afterwards (I have adhd and visual stimulation is something I usually rely on all the time) but yeah any tips on coping through the pain would be amazing 🥹

Many of us spent years thinking we just had "bad eyes" or a stubborn astigmatism. Was there a specific moment, like failing a DMV test or realizing you couldn't read street signs, that made you realize your vision issues were something more than standard?

Over a decade ago, my ophthalmologist fitted me for RGP lenses, but they were incredibly painful. It honestly felt like shards of glass in my eyes. I later had CXL, and with strong prescription glasses my vision improved enough for a while.

A few years ago, I learned about scleral lenses and decided to try again. I found an in-network provider, but they had fairly limited scleral fitting experience. Unfortunately, I ended up scratching my cornea during the process, and my ophthalmologist advised me to stop trying.

Recently, though, my vision has been getting worse again with age. I have an appointment coming up with a corneal specialist who’s out of network, but at this point I’m willing to pay if it could improve my quality of life. I’m expecting they may recommend scleral lenses again, and I’m hoping that working with someone more experienced might lead to a better outcome this time.

Would really appreciate hearing from anyone who’s had a difficult fitting experience but eventually found success.

In March 2025 three different ophthalmologists diagnosed me with keratoconus (they made me visit multiple offices to make sure) with only 24 years. The last ophthalmologist, who is a specialist in keratoconus and does CXL, insisted on doing the procedure as soon as possible. My biggest problem was that I had no health insurance whatsoever and both eyes would cost between $10.000-$12.000 in my country.

One year later I finally have a job and health insurance that helps me a bit with the procedure. Today was my follow-up appointment and my doctor said that we need to do the CXL this year. This time though, he said there was a second option that was way cheaper for CXL: epi-on.

After reading a lot of posts I have some mixed feelings about the procedure, but I’m still inclining myself towards it because each eye would cost $750 instead of $4.000 for epi-off. No matter what option I choose, my surgery date is for September of this year (I have to make some arrangements with my job and save up for both procedures), but I would like to know what experience people have with these procedures. A lot of the posts I found were old and I would appreciate learning of more recent ones.

For context, I’m out of the United States and it’s normal for these procedures to cost so much in my country. Also, my ophthalmologist is confident that if my eyes react positively to the CXL we can do a laser surgery in the future to reduce my prescription.

TL;DR: my daughter is 7 and autistic, we were diagnosed last year. We finally got in with a pediatric specialist this week, and I’m terrified about progression and future treatment options with her sensory issues, what comes next at her age?

My 7-year-old daughter was diagnosed with keratoconus last year, and honestly I feel like we’ve just been trying to hold things together with tears and prayers because we live in the middle of nowhere and there are no pediatric eye specialists here.

We’ve mostly been relying on a local optometrist, frequent prescription changes, prisms, and a lot of guesswork while trying to figure out what’s actually happening with her vision. We finally got in with a pediatric ophthalmologist/corneal specialist this week, and I’m trying to figure out what to expect and what questions I should be asking.

The hardest part is the functional decline we’re seeing between prescriptions. She LOVES reading. She reads above grade level and literacy has always been one of her favorite things. But every time she gets a new prescription, we slowly watch her vision deteriorate again over the next few months.

It starts with ghosting/double or triple images. Headaches. Squinting. Eye rubbing when her eyes are tired. Then her reading changes. She goes from comfortably reading chapter books with smaller font to needing larger and larger print. Eventually she starts choosing board books because the spacing and font are easier to see. She starts misreading words she normally knows easily. Her handwriting gets larger and less organized too.

And the heartbreaking part is that she’s beginning to notice it. Her little brother will ask her to read to him and sometimes she just looks so sad because the words are “too little” again, so she can’t always read the books he’s picked out.

She’s autistic, and eye appointments are already extremely difficult because of sensory issues and anxiety. We can barely manage eye drops. The idea of scleral lenses honestly terrifies me because I genuinely do not know if she will ever be able to tolerate them.

I’m trying very hard not to catastrophize in front of her. She thinks getting new glasses all the time is fun and exciting, and we’ve tried to preserve that joy for her. But privately I am terrified that she is going to lose functional vision before she ever really gets to just be a kid and live her life.

For parents or adults with keratoconus:
What should I expect from this specialist appointment?
Did anyone else have a child diagnosed this young?
Has anyone had success with autistic/sensory-sensitive kids and contacts or scleral lenses?
What do you wish someone had told you early on?

I think I just need some realistic hope and a better understanding of what comes next.

Hola llevo 2 años con mis lentes esclerales y en los ultimos meses estoy batallando con el uso, hasta el momento pense q tenia controlado el tema de la insersion pero ahora tengo mis dudas.

Despues de ponerme los lentes usualmente reviso q no se hayan formado burbujas o q se vea uniforme el contacto del lente, pero usualmente despues de 2 horas empiezo a sentir malestar o incomodidad, de tal manera q me los tengo q retirar, la incomidad se siente como si los lentes se comprimieran y se empieza a sentir como una presion en el ojo, despues de retirarme los lentes mis ojos se sienten irritados y no se hincha el parpado pero si se me queda el ojo me dio cerrado.

Creo q mantengo los lentes en buenas condiciones y cada 2 o 3 semanas los limpio con una solucion peogent intensiva, la solucion salina q uso es estandar de farmacia, y pues nada, a alguien mas le pasa o tiene experiencia lidiando con la situación.

Saludos desde México

Hello, I’ve been using scleral lenses for 2 years, and in the last few months I’ve been struggling with them. Up until now I thought I had the insertion process under control, but now I’m starting to have doubts.

After putting the lenses in, I usually check that no bubbles have formed and that the lens contact looks uniform, but usually after about 2 hours I start to feel discomfort, to the point that I have to take them out. The discomfort feels as if the lenses were compressing, and it starts to feel like pressure in the eye. After removing the lenses, my eyes feel irritated. My eyelid doesn’t swell, but my eye does stay somewhat closed.

I believe I keep the lenses in good condition, and every 2 or 3 weeks I clean them with an intensive cleaning solution. The saline solution I use is the standard one from the pharmacy. So, I’m wondering if anyone else has experienced this or has tips for dealing with the situation.

Greetings from Mexico.

Hello, this post has no particular goal. I was recently diagnosed with keratoconus in both eyes at 25 yo and one of the eyes is so advanced it's visible at naked eye if you pay attention, vision 1/30. The other isn't great either, 5/10, I had cross-linking to stop it but...yeah.

I just feel dumb for not having my eyes checked more often and earlier. I don't even know if I could avoid it, because rubbing my eyes sometimes had an effect, or not. But it doesn't matter anymore, I saw two different doctors and things will be messed up for the rest of my life.

I'm just coming to a point where I'm tired of everything. First it was family issues since I was a child, and I said okay, we can overcome that, I can build my life now. Then social anxiety was harder to deal with than expected. I had to accept looking dumb, being ignored by the whole world, until I convinced myself I could do it. Already a few interactions were made embarrassing either by the fact I cannot recognize people immediately due to bad vision, or due to people discovering my vision is bad by chance, in daily actions.

I don't think there's any way to turn my brain into thinking there's any hope one girl on this planet would have any interest in a socially anxious, kinda blind guy.

I also would feel guilty having kids thinking about it, as I would cause him/her the same issues. In short, my life stopped to make sense before I could even realize it. All I can do is isolating myself as usual and focus on studying and working to avoid thinking about what I cannot have and what I cannot fix.

I'm sorry, that's how I feel. I don't think other people in my condition are worthless nor I meant to ruin the mood to anyone.