So, in september i got diagnosed and my doctor made it clear i needed to have surgery to implant a ferrara ring in my left eye. I was scheduled for october 24. Since then, i got rescheduled for november 7, and now, they want to reschedule me again for either november 14 or november 21. I am inclined to go for the 14, but november 15 is a national holiday in my country and there will be no way for me to have my evaluation on the following day. And since i live in a small town 2.5hours away i cant just pop back in monday. Gas is expensive. Not to mention what if they decide to reschedule again because the holiday? On the other hand, november 21 seems so far away and my left eye is so bad. Everytime they give me a date i organize day off work and then i have to take it back and reschedule again. Im a freelancer so i have to talk to each client over and over. I just wanna cry. I feel exhausted and I dont have anyone to talk about this. Should i trust and schedule for november 14 so i can have it the quickest possible, even if i have to wave off the post surgery evaluation? How needed is that? Or should i go for november 21?

Hi there folks.

A quick backstory before my question: So I had epi-on in my left eye which was the bad one, way back in 2015. Unfortunately, due to poor comms from my Doctor, and also some laziness on my part, I didnt follow up for years thereafter.

In early 2023, I realised that I needed to have it seen to and by then it had progressed quite rapidly. I then proceeded to repeat the epi-on in my left eye (now the second procedure in that eye) and also do it in the right eye for the first time.

My 6 month check up was positive with no progression in either eye. However, my 12 month check up showed progression once more in the left eye.

My ophthalmologist now suggests doing epi-off in the left eye. I'm currently just above 400microns but she says i need to do it ASAP.

My worry is that if epi-on was done twice, with no effect, is there even a point in trying epi-off now, and dealing with all the pain and potential risks etc? Do I just leave it as is and pray that it tapers off.

NB: I'm currently 30, and vision in the left is 20/200, with the right being 20/25.

Hoping to get some reassurance here bc I’ve been seeing a doctor that seems very reputable/trustworthy but I just can’t stop worrying.

Back in May I had my first pachymetry and found out I have unusually thin corneas (around 494/495 in both eyes, can’t remember the exact number) as well as irregular (asymmetrical) astigmatism, but the doctor tells me that I don’t have any posterior signs of keratoconus, so besides avoiding rubbing my eyes, I don’t need to worry.

I just had another checkup on Monday after he agreed to give me a 6 month checkup as opposed to an annual one to help ease my mind. My corneas have not changed, not has my amount/angle of astigmatism, nor my prescription over all. It’s been 6 months and there has been no change.

I still can’t stop worrying about the thickness of my corneas. I have almost completely stopped even touching my eyes because of how terrified I am that I might cause keratoconus to myself. He tells me that some people just have thin corneas genetically, but neither of my parents seem to have thin corneas (to be fair they’ve never had them measured though) and all my grandparents are dead so as far as having an insight into my family history, I’m pretty much screwed.

I also have scleral thinning, which he also says there is no pathology for to be concerned about. I’m going to go for another pachymetry in six months because I just can’t stop worrying. He said if in the unlikely case I do develop keratoconus, I’d be a fine candidate for CXL, but I can’t shake this belief that I’m going to end up losing my eyesight. I’ve made myself sick researching this and everything related. Is there anyone who can help put me at ease? Is it possible to have thin corneas like mine and not end up with keratoconus?

In August 2023, I had C3R for keratoconus in both eyes.Both the eyes were operated on two different days at a gap of 2 days.During the surgery epithelium layer was removed and medicine was administered.I was instructed to take medication following the procedure, and a two-week recuperation period was suggested.I felt that my eyes were still photophobic even after two weeks.Aside from that, my cornea seemed extremely sensitive—as if the epithelial layer hadn't healed.I addressed the problems and went to the doctor for numerous follow-ups, but none of the therapies were able to help me get over them. Let's fast-forward to the present. I still have hypersensitive eyes, and simply the presence of micro dust in my eyes can cause days of suffering by scratching my cornea.Is there anyone with a comparable experience?

I seriously regret the decision of undergoing C3R!

Has anyone tried swimming or scuba diving while using your lenses? How did it go? Any infections?

I’m getting my eyes measured on Tuesday and thinking in getting eyeglasses for the morning and night when I’m not using my lenses but also in getting a prescription scuba mask.

Thanks!

I’ve never used this I always use puri lens , it says perservative free, does anyone else use this as a filler?

Does anyone know why this is not being produced anymore? Have used it for 10+ years and now at my last bottle.. quite scared to start using a different one now..

If cxl has a high success rate in halting this thing why are doctors not testing regularly for Keratoconus in order to prevent it before our vision goes below 20/20? Getting a corneal topography seems simple enough to do in routine checks so why is it not done? I was begging doctors I couldn’t see well for a year and a half. I had an oct, pressure test, an eye/brain coordination test and a freaking eye mri and still no one thought to get me a corneal topography. I only had one when I went to get lasik to help restore my shitty vision and that is one I found out.

Im at a friends staying over and forgot the liquid u put them in overnight. I still have my liquid to fill the scleral lense but could i use that as a over-night liquid?

Im not sober so i cant drive until tomorrow but if i cant use my lenses after removal im kinda fucked

I had a couple of questions regarding the procedure.

1- How can the doctor tell if I need CXL done again? What value on the scan should I be keeping an eye on to know when it's time for another surgery.

2- My 1st and only CXL was done in 2015. Will I be needing another soon? I've heard the cornea rebuilds itself every 8 years. Hence the question.

Note - My last topography scan was 7-8 months ago.

Can i do wrestling is this a save Sport with Keratoconus when my both eyes are in stadium 2 and also cxl done for one year.

I have keratoconus in both eyes in stadium 2. Can i do wrestling or is it to dangerous. Please some experiences.

Hello guys

I've had kerato in my right eye for around 30 yrs. Never spread to my (very good) left thankfully and so I've largely left it untreated and just had it checked out every few years to make sure I'm doing alright.

Pandemic kind of intervened there and so I hadn't had it looked at in ~7 or 8 yrs but went through it all again this week.

Doc mentioned possibility of scleral lenses for me.

My past lens experience (3x) has been universally pretty bad. I've had hard lenses made for me, found them so incredibly uncomfortable for such a tiny improvement in vision that it just wasn't worth the discomfort and the people seeing me with my watering eye and asking me if everything is OK and if I need to talk to anyone.......

Are scleral lenses going to be more of the same? Just as hard but 3x the size (and 10x the price!) and so on?

Any thoughts appreciated

I do have vision insurance but the office is not certain what might get covered. I knew it could be as much as 4k for lenses but when the doctor said I only needed to get for my worse eye, I thought I’d be looking at something under $2k. I think I might have said no at the desk if I hadn’t just been dazzled by seeing nearly perfectly with the test lenses.

Sorry for the long post. I don’t really have anyone close to me that can relate to this and I just need to get this all off my chest.

So since being officially diagnosed with Keratoconus, my left eye has been on a decline. I would get what I describe as intense pressure in my eye at times.

Since having CXL done in July I don’t remember a time I really got pain or discomfort with my eye. Unfortunately last week I started experiencing this again a couple of times. I am worried the CXL hasn’t worked. I am currently waiting on an appointment letter for my 4 month post treatment scans but it hasn’t arrived yet. I get really anxious daily waiting on the post coming in. Then it isn’t there n the cycle of anxiety starts again. I am thinking constantly about if it hasn’t worked and if it won’t work at all. I am scared for what is to come and I know I shouldn’t be but I can’t seem to shake it.

Has/does anyone get pain quite often? Did you have CXL then still get it afterwards?

I have been using my lenses for about 7 months now and at first I only used saline to fill them but I would have to take them out and refill them every 3 hrs due to fogging I switched to a high viscosity solution but all it did was up to about every 5 hrs they need a refil. Does any one have this issue and may have a solution?

this is so random but i’ve noticed that when i wear my sclerals, chopping onions doesn’t bother my eyes as much/at all. i’m wondering if other people have this experience — i think (?) COVID and other aerosols can be absorbed if the particles get into your eyes and wondering what size molecules the sclerals might be blocking? idk if this makes sense. i assume the onion particles are much larger than covid etc but i am just wondering if anyone has any info on this

Hello there, I'm a 20M male diagnosed with Keratoconus (KC) in late 2023. I underwent corneal cross-linking (CXL) surgery on my more affected eye in January. Post-follow-ups, my doctor recommended scleral lenses to correct my vision and potentially halt progression.

My vision is generally normal, except when reading the Snellens chart. During scleral lens trials, none of the lenses could correct my vision to 6/6. The doctor attributed this to dryness in my eyes and prescribed drops and eye gel. While these helped with dryness, my vision remained unchanged, even with the lenses.

I was advised to proceed with the lenses anyways. I've been wearing them for a couple of weeks, but I prefer not wearing them due to irritation and I have better vision without them. It feels like wearing an incorrect contact lens.

My questions are:

1. What could be the reason my vision isn't correcting with the lenses i.e not getting better, unlike many KC patients around me ik things are different with everyone and can be much severe.
2. Are these lenses beneficial for me, considering my case was diagnosed early with no progression?

Thanks for your valuable time, and best of luck to those going through similar experiences.

Have any of your doctors prescribed you B2 vitamin tablets? I came across a study that suggested this could aid in stability of our condition. Here is the study -> link

I don’t have keratoconus, but you all seem very knowledgeable and the only people out there talking about cornea transplants, so please forgive my infringement on this sub.

Long story short, I had inflammation in my cornea that caused scarring that affected my vision, and I was on steroid eye drops for 12 years. That thinned my cornea considerably, and a few months ago, I woke up with a hole in my cornea. They glued it back together, but my body started rejecting the glue and the perforation did not seem to be healing completely. So now I am scheduled for a full thickness cornea transplant in the next few weeks.

For those who have had a full thickness cornea transplant, what was the physical recovery like? I’ve read a lot of people‘s experiences of vision improvement, etc. But I’m wondering what I should expect on the physical side of things. Like how many days were you down afterward? What can I expect to be able to do in the weeks following the surgery? When were you back to mostly normal physical activity, other than not bending over or lifting anything over 10 pounds?

I’ve been diagnosed for about a year now, Things are going okay for me and it sees managable enough…but can someone that has lived a while with this tell me, what are the odds i can get by for the rest of my life with doctors visit and just sclerals lenses? Will I get to a point where contacts are useless? I’ve had cxl in both eyes.

So ive had it in my left eye for over 2 years now but my right eye I still see crystal clear, and I read online that there's a 90% chance you can get it in the other eye too, and im a bit worried, is this true

Hello everyone,

I wanted to share an update and hopefully shed some light on what’s been a truly painful journey. For the past year, I've been dealing with extreme eye pain and dryness that seemed almost unmanageable. I previously shared my story here in this sub, but I think it's worth revisiting, as I may have finally discovered the underlying cause.

In short, I’ve been struggling with two issues:

1. Severe dry eyes, especially after exposure to wind. My eyes would turn bright red and the pain would be unbearable.
2. A more puzzling issue where wearing scleral lenses actually increased the dryness and pain. Scleral lenses are supposed to help alleviate dry eye symptoms, so my doctors were equally puzzled and unsure how to help.

The pain was so intense that it left me feeling isolated and deeply depressed. Over the past year, I gained 20kg, withdrew from my social life, and even struggled with my studies and work. Talking to people felt impossible—I constantly felt discouraged and ashamed of my condition. When I wasn’t wearing the lenses, the discomfort was moderate, but putting them on caused excruciating pain, which lasted every single moment I wore them.

Under the care of my university’s health clinic, I tried everything from multiple sets of scleral lenses to new eye drops, like Xiidra and Miebo. Despite all the treatments, my hope for improvement dwindled, and I began considering leaving school and returning to my hometown, where the more humid climate seemed to spare me from this relentless dryness.

Then last night, I shared my story in an alumni group chat, and a fellow alum suggested that the air in Davis (where I live) could be triggering allergies. Taking their advice, I tried two drops of Olopatadine—and within seconds, the pain subsided! It was almost unbelievable; my dry eye symptoms seemed to ease. This morning, I applied Olopatadine again, wore my scleral lenses, and did not feel the usual severe pain or dryness that I’d come to expect.

Tomorrow, I’m scheduled to see my doctor for allergy testing, and I’m hopeful this might finally confirm that allergies were the root cause of all this. It’s hard to believe, and it’s also shocking to think that I spent a year in pain without this ever being suggested as a possibility. The medical system’s inefficiency is frustrating; it took me a year of appointments, two pairs of scleral lenses, and countless new treatments to even consider an allergy check. Appointments with my ophthalmologist were limited to one or two per month, so I eventually looked into out-of-town doctors in places like San Francisco or Sacramento. But getting a referral from my primary care doctor is slow too, with waits up to a month long.

After everything, I’d just say this: If you’ve recently moved to a new place and suddenly develop dry eye, pain, or redness, please don’t overlook the possibility of allergies. It might save you a lot of unnecessary pain and frustration!

Hi, finally I have decided to post as I believe that some of you may provide me with extra courage. I had cxl done in both eyes. One in March 2020 and the other in February 2023. Since then I have tried RGP lense in my right eye (the one which with glasses I got about 3% of vision, practically blind) the left one is fine just with a glasses but not even close to 20/20. So I was trying to piggyback as it was recommended due to thin cornea (as far as I remember it correctly) but I'm finding putting them in and removing (even worse than put them on) very difficult, uncomfortable and it makes me so scared. After about two months of trying it (wearing them on/off not consistent) I flushed lense in a sink... I haven't ordered replacement as couldn't be bothered... but I loved my vision... I could see almost perfect with right eye when without the lense I can't even read subtitles on 65 inch screen from 2 meters. I tried plungers for removing but once it kind of sucked my eyeball. I get scared as hell and never again used it. Is there any hope for me? Have you got any recommendations of what I can do? Or should I just live with it. If you got any questions feel free to ask because I'm not sure if I covered here all my fears about it. I'm feeling hopeless.

I am wondering if there are aditional steps I can take to improve my vision after my Keratoconus has been stable for years now, buy my eyesight is should be better.

Just had my week follow up after starting to use my lenses and I didn’t even think about asking. Google says soak for at least 4-6 hours or overnight but can you soak them for a couple of days or a day? Thank you in advance.

Curious on any good recommendation and prices for sclerals lenses in Sydney?

Previous cost was around 2.5-2.7k for the pair at Westmead Eyes Optometrists.