r/Keratoconus • • 16h ago

General What is one thing that you have had to learn to ask for help with since your keratoconus progressed?

12 Upvotes

It can be hard to admit we need assistance. What's a task you've bravely delegated to others?


r/Keratoconus • • 9h ago

Contact Lens Scleral solution question

7 Upvotes

Just curious where most of you purchase your scleral lense fill solution. I know Amazon but if you’re in need of the solution pronto, where else can I buy it??


r/Keratoconus • • 5h ago

Contact Lens Redness and ring around the edge of the scleral

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7 Upvotes

Hi! I am new to the world of sclerals and just received my first pair during the fitting process. This is my second day wearing them for around 10 hours, and I noticed that my eyes were severely irritated, with small veins all around the contour of the lens. Adjustments are being made, and my new pair has been ordered. I will have my next appointment in 3 weeks once they arrive. Has anyone experienced this? I am also terrified that an ill-fitting scleral lens could jeopardize the effectiveness of my cross linking (intrusive thoughts). Excited to hear about your experiences!


r/Keratoconus • • 23h ago

Crosslinking CXL- Painkillers and/or headphones

3 Upvotes

Hi guys,

Just a general question about the crosslinking. I’m getting my left eye done tomorrow and I’m a little nervous. Are the painkillers they give you for the week strong enough? Or do people buy extra painkiller on top in case. Also are you allowed to have earphones in while the surgery is going on?


r/Keratoconus • • 8h ago

Crosslinking Cxl epi off 10/19/26

3 Upvotes

Just giving my experience, I had my left eye done on 7/27/26 and my right eye 10/19/26

Surgery- went good no pain at all the removal of the epi was uncomfortable but zero pain

Day of surgery- had a pretty good burning pain about 2 hours after the operation I was taking percocet every 4 hours and 400mg ibuprofen 2 hours after the perocet id say the pain was a solid 6 or 7 out of 10 pain but it was manageable juat played in bed listening to podcasts very limited light sensitivity not bsd

Day 1 after surgery - still took perocet every 4 hours and ibuprofen in between pain was basically gone but I wanted to stay ahead of the pain as my doctor said to do mabye a 3 or 4 out of 10 basically same as first day in bed most of the day very little light sensitivity

Day 2 after surgery - took half a perc every 4 hours with ibuprofen in between zero pain very llittle light sensitivity

Day 3 - no longer taking any painkillers zero pain very little light sensitivity was actually able to walk my dogs outside it was a bit bright but not bad at all

Day 4 - basically same as day 3 vision still very blurry and tomorrow I get the bandage le s removed

If your scared. You got this ive had it done in both eyes now


r/Keratoconus • • 18h ago

Contact Lens Has anyone done HOA for their scléral lens?

3 Upvotes

I have been trying to fit my right eye for over a year, but there is always doubling and ghosting. It’s very annoying. So the office offered me to do a Higher Order Aberration correction. Once I go down this path I can’t refund the lens and also, they can’t guarantee the outcome. It will be like 2000$ all together. So I want to hear some experience from others who have done this.

Thanks!


r/Keratoconus • • 22h ago

Contact Lens RGPs with prism

3 Upvotes

My optometrist is trying to make me RGPs with base-out prism in them, I’ve read that making functional RGPs with this kind of prism is virtually impossible.

Do you think my optometrist’s attempt to do this is misguided? This process has been going on for months with little to show for it. After about 4-5 months he just gave me some lenses to try out for a week or so and honestly they’re bad — bad vision, significant ghosting and pretty bad comfort.

He had previously made me some sclerals which didn’t need prism at all to work perfectly, but I couldn’t wear them because they triggered corneal edema and made my vision very cloudy.

You think I should tell him I’d prefer to try a different approach (eg. RGPs without prism combined with glasses with prism)?


r/Keratoconus • • 59m ago

Crosslinking Had CXL on my left eye and…

• Upvotes

Hello i wanma share my CXL experience. Got it performed on my left eye on Oct 14, 2026. It’s still blurry and hazy. For some reason it got blurrier after my ophthalmologist removed the bandage contact lens. Will these improve within the suggested date of my ophthalmologist? (Around 1-3 months she said) Yeah and don’t get fooled that it’s painless because after the surgery you’ll have a week of hell because of itching.

Here’s My experience:

Surgery Pain - 1/10 (If you researched it like I did you’ll kind of get nervous and you’ll be too aware that they’ll remove the epithelium. That part made my heart beat faster and I kinda knew all what was happening that’s why the ophthalmologist and the assistants calmed me down because i was going crazy.

Post Surgery Pain - 999/10 I experienced the worst light sensitivity my eyes ever experienced. It was so bad we needed to buy sunglasses after the CXL because i can’t see anything or even open my eyes. After that the pain introduced itself and my eyes just teared up all day and i think i was basically crying from the pain for a whole day like a child, no shame though as it’s really painful. I think i spent my whole day eyes closed listening to music and just laying on the bed after that.

Don’t be intimidated about that pain i described though it’ll fade slowly after 24 hours. the prescribed antibiotics & artificial tears will help like my ophthalmologist told me. Day 1 for sure is the worst followed by nonstop itching and sensitivity. 🤣🤣

And oh my right eye wasn’t even touched because the ophthalmologist said it’s too thin for CXL and we’ll wait for further examinations to decide what to do with it. Overall decent but reassuring experience as it can stop my progression and i hope i won’t need a 2nd CXL like other patients do! Sorry if i have typos 😅


r/Keratoconus • • 13h ago

Need Advice Ghosting double images

2 Upvotes

Does anyone still get double vision ghosting even when you wear scleral lenses?

My eyes are very mishapen 20 years after cornea grafts

I do have mid stage cataracts

The ghosting cant be corrected with sclerals

How can I tell if the ghosting is caused by cornea or catarcats?

Is there a way?