r/Keratoconus

I am going to have cxl tomorrow and i am scared please tell me is pain afterwards bearable how will i manage the pain i am soo scared

My sister is abroad and wanted new glasses, so I went to my top notch optician. I just casually asked him to test my eyes. When he went to my left eye on the machine where you look at the balloon, he asked me to cover my right eye without glasses, my left eye was blurry. He put my current number in the left socket, blurry. Asked me not to worry but go to an ophthalmologist and let him check for Keratoconus.

I am confused. I am a technology consultant at a big 4 firm. I love my profession. My wife's uncle is an ophthalmologist, he will check on me on Monday. He says it's not an emergency. I fucking hate this. I am 30m with my first kid on the way. Why didn't anyone or I see this coming? I had been rubbing my eyes a lot.

So I got my RGP contacts about 2 months ago. They had me wear them for a couple weeks but they have glare really bad around the edges all the time. I'm now on my third pair the biggest size they can give me apparently and the glare is still not all the way gone granted a lot better than the first pair. They are also still irritating alot of the time so I ordered some dry eye supplies in hopes that will help the irritation issue. I also feel like I can feel the pressure of them on my eyes idk if that's normal. My eye dr says they fit great every time she looks at them but I don't think shes fitted many rgps. Idk the glare im getting doesn't seem right and my eye Dr is acting like shes never heard of it before. Like I can literally see the edges of my rgps in my eyes and the lights glare real bad around the edges. Does anyone know if this is normal or what's going on?? I want to like my RGPs so bad everything's so crystal clear in the middle. The glare and uncomfort is just driving me mad. I've been told I have huge pupils so idk maybe that's my issue lmao.

What should i do now? I know that I cannot take it by myself, should i call ambulance?

Lost my right RGP lens after less than 10 days. I had already lost them prior so these were reorders.

Lost my left one last week.

Two times they just popped off my eyes due to them being so dry. The first time I lost my right eye it broke as I inserted it into my eye leaving a bad scar.

This is all despite my RGPs being "perfect fits"

I am so fed up with this condition, I am back to being blind

I want sclerals so bad but the NHS is refusing to budge
and I can't afford private

I hate my fucking eyes

My 11 year-old had cross-linking surgery on Thursday morning (2.5 days ago). The first day was challenging for him, but he was able to get through it. The second day in the morning was a little bit rough, but better than the day before. By the afternoon, a couple of his friends came by to visit and his whole demeanour perked up. He ended up going to the mall wearing his sunglasses, of course indoors and outdoors. He was told by the doctor to wear the sunglasses all day, indoors and outdoors and while sleeping with a stocking wrapped around it to hold in place. I don’t have anything to hold it in place so the first night he just wore the sunglasses by themselves without anything holding it in place. He didn’t wear the sunglasses to bed on the second night. And tonight will be the third evening. Is it necessary to wear the sunglasses or have a protective patch? He doesn’t sleep on his stomach and he’s still has the bandages on his eyeballs which will be removed on Tuesday. Today he’s doing amazingly well and said his eyes feel like normal as though he never even had surgery.

Have most of you been told to wear protective shields on your eyes while you sleep? Should I be concerned even though my son says his eyes are perfectly fine now?

This might be too niche of a post but hoping at least one person on this thread has an answer for me. I am getting epi-on done next month (first time getting the procedure) and I agreed to take on a dogsitting job that starts two days after. I immediately realized my mistake, but wondering if anyone has experience taking on a similar job right after epi-on before I go back and tell the person I no longer can. I know I won’t be able to put on my scleral lens (right?) immediately after but can get by for the most part with it just in my bad eye (procedure is on my good eye unfortunately). Again, I fear this may be too niche since this is such a new procedure, but I would love the extra money if I can do it in a responsible way. What would you do if you were me? 😩

I'm from India and wear a scleral lens for keratoconus.

My doctor recommended using a 0.9% NS bottle, but I get slight fogging after 4 to 6 hours of wear.

I see a lot of international recommendations like Purilens and ScleralFil, but they're quite expensive here.

For Indian scleral lens users:

1. What saline do you use to fill your lenses?

2. Have you found anything better than regular NS that's affordable and available in India?

3. Has changing saline made a noticeable difference in comfort or midday fogging?

4. What cleaning/disinfecting solution do you use?

Thanks!

My eye doctor, that I’ve been going to for the past 10 to 15 years had to sell her practice to MyEyeDr because of financial difficulties caused by COVID. She sold out two years ago and I could see the pain and unhappiness on her face.

The smile was gone that she usually had when I came in, she didn’t ask about my family or what was going on in my life. It was get the exam done and hustle the patient out. The quality of her work was still there, but the person touch was gone.

Yesterday, I went in for my annual visit, and the people at the counter were the usual circus. They didn’t seem to know what they were doing, or when they were supposed to do it.

My doctor’s tech came out to get me for the exam, which was an improvement. The last two visits, he had not been there and the girls that were didn’t know what they were doing. They were skipping tests and I had to remind them or they wouldn’t have gotten done. But now, the A-Team was back.

When the doctor came in to do my exam, the smile was back on her face, and the first thing she did was ask me about my bad back and if I was still retired. Then when we were alone, she rolled over next to me and whispered she was retiring in May 2027. I immediately asked her where I should go for a doctor and she assured me that the other doctor was very knowledgeable about KC and other eye diseases. She said she had insisted that the company transfer her in to get familiar with the practice before she retired.

So everything looked AOK and it looked like I wouldn’t have to go somewhere else after all. Maybe my suspicions of MyEyeDr were unfounded. But then the billing came.

For a normal eye exam with a topography, refraction, and retinal scan, I normally have to pay $70. Out of pocket after Medicare and Supplemental insurance. But not yesterday. For the exact same services that I always get, it was $270. I asked the guy if he was sure, because my bill is usually $70. He looked it over and said not with contact and glasses fitting. I told him I did get a fitting, I’m not getting glasses and my contacts are fine, they don’t require updating. He said but we supplied you with the prescriptions. What? $200 for two pieces of paper?

I guess I’m not going back there.

Any of you guys ever tripped? If so were you wearing corrective vision aids and if so what? Or had corrective vision surgery? I've recently gotten into shrooms for is medicinal effects on introspection and mood and looking for others that have had this experience. Id love to hear from you.

Hey guys! I was diagnosed with keratoconus a few years back now & I've somewhat been just dealing with it. I was pushed along to the contact lens clinic locally, got some sorted but every time I had them in , I had a major freak out (this went on for a few weeks) so I haven't attempted wearing them again since. While my right eye is somewhat fine & hasn't progressed in the last 2 years, my left eye is just horrendous.

With me not really having any friends who have the same condition, it's difficult to find some reliable help when looking for answers.

Firstly, does anyone have any tips on how to stop rubbing your eyes so much? Any whacky & wonderful methods to help snap out of it? I've tried & tried, but I find it so hard not to rub my eyes, specifically on a morning.

Secondly, I'm an avid gamer. Specifically the likes of Valorant. I feel at a severe disadvantage playing these games despite me having some suggested settings that could help. Does anyone play Valorant? What works for you in terms of crosshair, settings etc?

I'm certainly open to any tips regarding keratoconus as I've never attempted to reach out for help & just kind of got on with things as they are but since my left eye is still slowly getting worse, I just want to help myself here.

Thanks in advance!

I recently turned 22. I began noticing decline in my vision at 16-17. My school told my parents I needed to see an optometrist, and they refused. I struggled academically because I started to be unable to even see the board when they were teaching. At 18 I moved out & my parents removed me off their healthcare so I couldn’t really afford to get my eyes looked at.

At 21 I went in for my license renewal and bombed the vision test. I finally was able to get the funds to go to an optometrist, and she said she’s confident I have KC but need to see a specialist for an official diagnosis.

It takes me months to get into a cornea consultant. They verify I have KC. They tell me my healthcare (that I purchased for this specifically) doesn’t cover contact lenses. They tell me my lenses will be $1600 per eye (I have KC in both eyes). My right eye is already progressed so much that even with correction they said I will never achieve 20/20 vision again. My left eye isn’t as progressed. I’m starting to be unable to see with my glasses. What do I do?

I can’t afford the lenses or get approved for care credit. I can save up but it will take me at least a year to pull together an extra $5k just for contacts. They also told me I desperately need CXL surgery because scarring is already occurring on my right eye. I didn’t even discuss costs with them because I told them I won’t be able to afford it. Is there anything I can do? I’m genuinely at a loss. The doctors just kept apologizing and weren’t really much help. Which I’m not upset with them, there’s nothing they can do. But like? Do I just keep getting my glasses prescription changed and hope for the best? Idk. Thanks so much for reading.

Hi everyone,
I’m scheduled to have corneal cross-linking (CXL) for keratoconus soon, and I’ve been getting quite anxious after reading about possible side effects online.
What worries me the most are things like:
corneal neuralgia (neuropathic eye pain)
long-term dry eye
persistent haze or vision loss
infection or other complications
I know CXL is considered the standard treatment for stopping keratoconus progression, but online forums sometimes make the risks sound very scary, and it’s hard to understand what is actually common vs extremely rare.
I would really appreciate honest experiences and input:
How common are serious long-term side effects after CXL in real practice?
Is corneal neuralgia after CXL actually a realistic risk or extremely rare?
What should I expect during a normal recovery (pain, vision changes, timeline)?
If you had CXL, would you still recommend it?
I’m trying to get a realistic picture so I don’t overthink based only on worst-case stories online.

Hi everyone,

I'm just wondering what your experience with scleral lenses is? I have used RGPs for 20 years and piggyback for the past 4.

I'd been wondering about sclerals, but believe it or not, in the UK, it's really hard to find someone competent or willing to fit them.

I'm fortunate enough to have contacts abroad, and i got a trial and got them fitted. 1400 smackaroonies later, they appear to be great. I barely feel them. Just obviously, if I wear them for long hours, there is some redness, but I've seen on this subreddit that this is faily common, so no issues there. I noticed one thing, though: when i got them fitted, I went to this place, which is the oldest in the country, and among the oldest in Europe still in business, with very competent staff. I'm not going to say where, for privacy, but this is just to say they are very competent and their name is a guarantee. They have fitted the lenses and tried with an ungraduated set. They say I can just see about 6/6, 10/10, 20/20 whichever you prefer to use. They tried putting grades on, but they made the vision worse for some reason, so they left me with lenses with no grades. I can see great. Actually, the images and ahapes are even more defined than with RGPs, possibly because aclerals don't move. However, i notice that i struggle to read at a distance a bit more as opposed to when I wear RGPs. Has anyone else experienced the same thing?

TLDR: Ghosting on my good eye gives bad headaches and I'm thinking of doing specialized CXL for preserving it and hopefully reducing ghosting

Hi, I'm 21 and I got diagnosed a little over a year ago but my KC started around 18. My situation is as follows:

Right eye: can't really read my phone but glasses help a bit, bad blurry ghosting under text (especially white on black)

Left eye: i use it for my daily vision, still decently crisp, sometimes a bit more tired, in the past two months or so I've started to get ghosting on it too which gives me super uncomfortable headaches daily, and this ghosting appeared in-between scans but my doctor says my KC hasn't really progressed at all in that time

I find myself in a tricky situation because my vision is technically good since my left eye sees well plus they said it hasn't really progressed in the past half a year. The issue is the with ghosting now on both eyes I can't focus at work or enjoy anything where there is a light source

I'm now planning to see a specialist for CXL and i want to know where i stand by asking you guys. I'm thinking of doing CXL on my good eye first since i want to preserve good vision while i still have it and hopefully get rid of the ghosting so i can live life normally again. Also the CXL I'm aiming for is topography guided (the machine is called Avedro KXL II and they basically modulate the UV intensity based on the shape of your cornea as i understand it). Another name i found for it is PiXL or customized/selective CXL.

My main questions therefore are:

1. Does it make sense to push for CXL if they say my KC hasn't progressed?

2. Does it make sense getting it in my good eye first?

3. Can CXL reduce ghosting?

4. What other options do i have? Sclerals seem like an overkill only for ghosting

5. Does anyone have experience with this type of CXL? I can't find any info about it online

Thank you all!

Had my CXL on the 22nd of june. Was just wondering if i can go outside on sunny or non sunny days without sunglasses

Has anyone been able to find these yet? Or heard if/when they’ll be available again? I’ve tried a few of the others that people have suggested, but none seem to work quite as well.

Thanks for any updates anyone has!

That buzzing next to your ear hits different when you're too blind without your lenses to even fight back. You just lie there, defenseless, and pull the blanket over your head.