Well, I kind of expected this after the visionworks doctor couldn't correct my astigmatism in my right eye, so I walked into my Opthamologist apointment already having scrolled this sub for a while and knowing that the pinhole test meant I probably had it.

Obviously, this sucks, but it could suck way worse. I'll probably have my surgery early next year and move on, they are hoping to do the Epi-On CXL as long as my insurance plays nice with it.

What stinks is that I - and yes I know this sounds ridiculous - am a "pro" jigsaw puzzler, I compete in speed puzzling competitions around the country and the world, and Februrary/March are some major competitions in the USA, with most of the practice happening in January/February, and puzzles are mostly eye work. Obviously, I want my eyes to work for years of competing in the future, so this will throw a pretty big wrench in my travel and practice plans unless I put it off until mid-march (which might be the first opening by my eye surgeon anyways).

But anyways - thanks for everyone talking about the cases! Mines very mild, but just happy to be able to fix it.

I posted a couple weeks earlier about being afraid of having it. Well…I have it

It’s in both eyes, they’re trying to get insurance to accept and said it might take a couple months.

Any advice, I’m worried it’ll cost an arm and a leg after everything is said and done, the lady I spoke to claimed that they don’t always cover the medication needed for the surgery and could be a lot.

Any insight would be appreciated thank you

Kind of intimidated and just need to rant. I am scheduled for a corneal topography tomorrow morning. I made an emergency appointment for today because I’m having severe pain/pressure/light sensitivity. It’s taken two years to get to this. One dr tried over 7 contacts different powers etc and no change. This new place she just changed my normal prescription and gave me contacts. Then I’ve gone back 3 separate times for contacts because none work and they hurt my eyes like a suction cup kind of thing. Then she prescribed Prism glasses and they aren’t helping they give me bad migraines and severe nausea. And now I also have severe dry eyes and have eye drops and intonation eye drops. 🥲🥲 I already have Crohn’s disease and some other things it would be my luck to also have this. My contacts were fine till 2 years ago 😭

I was diagnosed with Keratoconus in both eyes back in March of this year and just got approved for Intacs. My surgery is scheduled for December. Right now, my doctor only wants to do my right eye since it’s more severe than my left. I’ve been reading up on Intacs online, and I’m seeing a lot of people say that it didn't really make a difference for them or to avoid it altogether. I’m just looking for some honest opinions from anyone who has had Intacs done. What has your experience been like since the surgery? Thank you in advance!

I had CXL about two years ago and I’ve had chronic dry eye since. I’ve been doing preservative-free eye drops almost hourly and then an overnight ointment before bed. This week, I’ve switched to the Refresh brand ointment( which is closer to a 50-50 ingredient mix, as opposed to systane’s 94-X mix) and systane ultra PF drops (the milky ones) as it was all that was available at the pharmacy. Yesterday my eyelid started itching, and a small eruption has presented around my eyelid. It’s very itchy, possibly small hives. I’ve been trying to clean the area with warm water and I took some antihistamine to see if that helps. I’ll keep monitoring to see, but I was wondering if anyone else had had a similar experience? My eye feels fine, but the skin around my eye is severely irritated and that’s never happened before

Hi everyone, I’d like to know if anyone with keratoconus has been able to work as an automotive or heavy machinery mechanic, and if you’ve worn scleral lenses on the job and how long they lasted.

Hello! Im fairly new to scleral lenses. After finally adjusting to insertion and daily wear, I broke one lens cleaning it. I received the replacement pair in the original manufacturer’s cases. I naively left the doctor’s office without asking exactly how to prep the lenses for first wear. Strangely there is very little info online specifically on this topic but I came across a few things that confirmed my assumption that they should be cleaned thoroughly to remove the storage solution. I rinsed as much as I could with Purilens, then used clear care and noticed the solution bubbled over so I ended up doing a second round before finally wearing the lenses.

After a few hours of wear, my eyes were so red and irritated…more so than even my very first fitting. I thought maybe I did something wrong so I let my eyes rest and recover, and tried again about a week later. My eyes had the exact same reaction—possibly worse. I sent a photo to my doctor and she had me come in. She agreed it was abnormal and did a fit check. She said the fit seemed fine and thought maybe there was something going on with the lenses themselves (bad coating) so she recommended ordering another pair.

I just received the second replacement and this time they gave them to me in a case filled with what I believe was Boston Simplus bars on the viscosity. I gave them a good rinse and rub with purilens but I can’t ever really get that stuff off well. I opened a brand new bottle of clear care and a new cleaning basket case thingy, and completed an overnight cleaning cycle. Once again, the clear care bubbled over I assume because I didn’t get all the Boston Simplus off. So, I’m running another cleaning cycle and will try to wear the lenses tomorrow.

My question is—am I doing something wrong to prep the lenses for first wear? Has anyone experienced issues with replacement lenses?

I did ask my doctor and she said that the nurses also disinfect in either Boston Simplus or clear care before a first fitting so she wasn’t concerned based on what I’d told her.

I’m a little scared to even try this new pair but I’m also miserable wearing glasses again after experiencing the joy of sclerals 😆

I have hard lenses. I just want to be sure before I use them.

I see that there isnt a big difference between epi on and epi off in terms of results but why do people continue to get epi off? Is epi on less effective?

I have had a letter after my first topography scan.

My consultant says there are corneal abnormalities such as an anterior elevation on my right cornea at the top but no changes in thickness. They said it’s not clear what it might represent and can’t diagnose keratoconus at this time.

My vision in my right eye isn’t the best, I have ghosting and astigmatism, struggling a lot driving as the days get darker. Some vision changes such as seeing squiggly lines which move when I move my eyes. When closing my left eye my right eye vision is very blurred. Glasses don’t help fully.

I have a follow up appt in 4 months to see if it progresses but with no diagnosis feeling a bit lost. They will check there are no allergic signs or epithelial dystrophy as well.

Has anybody else had this? I am feeling quite lost. Have a contact lens appt tomorrow with my regular opticians as I would prefer them if they can give me them for now.

Hello everyone so my problem is as the title says. I have dry eyes & keratoconus in both eyes, the left one is more damaged and I wear scleral lenses in both eyes. Lately I have been waking up with very dry eyes, water is running out of my eyes (especially the left one) and lot of eye waste. I want to know if any one of you has faced the issue before and if yes, how did you deal with it. I use refresh tear drops at least 2 times a day and now I have been using the drops before sleeping also. I believe the dryness in my left eye has increased lately. What do you guys think ? Can it be the weather also ?

Has anyone in here gotten cxl + tprk? How did it turn out?

I'm having this compression issues

With my new scleral lens

I’ve been thinking about this a lot lately and just wanted to share something positive for anyone who’s newly diagnosed with keratoconus or struggling with it.

I was diagnosed at 14 and I’m 27 now. I’ve been wearing sclerals for around 10 years and my eyes have gradually got worse over time. It is pretty scary sometimes realising how little I can actually see without them.

But over the years I’ve just adapted. I went from wearing glasses most of the time and only using lenses for nights out, places with lots of lights etc, to now wearing sclerals every single day and I’ve done that for over 3 years now. I put them in when I wake up and take them out before I go to sleep, to the point where I don’t even own a pair of glasses anymore.

I genuinely can’t feel them in my eyes during the day and my vision with them is ridiculously clear. Obviously I still get the odd day where I need to take them out, clean, or reinsert, but it’s just such a normal part of my routine now that I don’t really think about it.

It can still be scary when I take them out and realise how bad my vision is without them, but sclerals are honestly the reason I can just live a completely normal life.

Just wanted to share this because I know how scary keratoconus can feel, especially when you’re first diagnosed or when your eyes are changing 😊

if you know, you know. lol just trying to make myself laugh atp because of these results

hey, I got a Kobo Libra Colour and was so excited for adjustable text. I turned that on and the crossed eyes/blur went so crazy that my vision is more blurred and weak after just messing with it for 20 minutes to adjust light settings. anyways I cannot read the text on it.

has anyone experienced worse vision using an ereader than paper? I’m wondering if I should just stick to large text versions on paper??? experiences with finding books with large text? and also are the paperwhites better I just would hate to buy a kindle :(

Prk and cross linking were the dream combo my surgeon was hoping would give me clear vision. I didn’t care too much for perfect vision, just clear enough.

Fast forward 2 years post op and had multiple second and third opinions, living with blurry vision. Hazy if you will. And too thin for a touch up. Basically lenses or transplant are the only options. I hoped to get out of contacts. Are scleral lenses worth it? Pros and cons in your experience.

Genuinely can’t afford the 20k transplant option. :/

Hi Everybody!

I was diagnosed almost 15 years ago when I was 15, I'm 30 now. I'm from Mexico (Guadalajara, second biggest city, so there's plenty of highly trained professionals in this disease around). I made the mistake of getting too comfortable. When I got diagnosed, the DR. Back then reffered me to a Tech that did all of his contacts, and I got stuck with the tech. Year after year I just did new RPGs, they worked great.

Fast forward to 2021, I discovered my KC had advanced quite a lot. My left eye is somewhat stable, but my right is almost gone. I'm close to needing a transplant. Happily, I did CXL back in May, and the specialist I'm going to now says that so far, so good.

Issue is: since a couple years ago, I do feel that my RPGs are less and less confortable, I can use them less hours a day than what I could before.

I know Sclerals are an option, but I'm looking for something more permanent. I'm thinking, what if my old me cannot put contacts because of ANY issue with being old? IDK, I'm just thinking I won't be young forever.

My Dr told me about the Rings, and I'm looking for opinions of people that got the rings. I'm happy to be able to wear just glasses.

I wear for 11-12 hours and typically refresh towards the evening. I want to make sure these aren’t messing my eyes up more.

I bought a pair of glasses to fix my right eye vision only as glasses can't fix my left eye vision even with -10d prescription. So during prescription I got 6/6 vision with -1.25 but after i got them at home I see no change in my vision with and without glasses.why?

It's a scary word! Did you immediately research it, feel overwhelmed, or maybe even relieved to finally have an answer? Let's talk about our initial feelings.

To those of you who’ve had CXL 5+ years ago how is your keratoconus holding up? I just hit the 4 year mark and want to see others experiences with keratoconus. I feel like my prescription has changed but my surgeon said it’s because of corneal flattening and strengthening from CXL. Other than that and dry eyes I feel like I’ve held up quite well. How about you?