r/Keratoconus

Hi everyone,
yes… this is yet another thread of this sort, but I need to get in touch with someone who can understand me, so here I am…

I’m 29 years old. I’ve worn glasses since I was born because I’m short-sighted and have astigmatism, and I have amblyopia in my right eye. I have my eyes tested every year, but this year I also had a Pentacam scan, and here’s the result: keratoconus. Moderate in my left eye, advanced in my right.

My eyesight has got worse year on year over the last seven years. I started out at 10/10 and 7/10 with glasses (left and right eyes) in 2019, and now I’m down to 7/10 and 4/10 with glasses. And now I understand why it’s got worse. Keratoconus.

In June, I felt really depressed, because I wish I’d been diagnosed a few years ago so I could have stopped the disease from progressing.

Now I feel stressed and depressed about the future. I’ve consulted some leading specialists in Italy for this type of condition and have received different and conflicting opinions.

Some of them think I should undergo CXL + PRK. Others, however, completely disagree about the effectiveness and safety of combining CXL and PRK (and I understand why) and suggest waiting, simply to see if the condition is progressing, perhaps by trying suitable contact lenses… and then, if it does progress, having CXL (on its own, without PRK).

Deciding which path to take is a nightmare.
On the one hand, the ‘dream’ of regaining some vision with CXL + PRK is a big one. On the other hand, I know that PRK should be avoided in cases of keratoconus.

I feel very tired because I don’t have a clear path to follow. and feeling down about the future that lies ahead. The fear of not being able to lead a normal life is overwhelming.

it is supposed to be epithel. off where they remove the epithelial layer with laser which will be less pain and more efficient

for those who had been through it how was the pain after? where did you do it? what vision correction option did you go through after stopping the worsening of Keratoconus?

I have a friend who's 16 years and she recently diagnosed with Keratoconus which makes cornea thin and in cone shape which leads to distorted,double and ghosting vision. Now she's in advance stage and can't even think about any treatment because of anxiety because no real solution and after risks of any procedure..now doctor told her she has to do a procedure called C3R in they which stops the further Progression bt she is convinced that slightly makes the vision worse than before and after that she has to stay on hard scleral lenses on her whole life which she can wear 12-14 hours in a day bt without them she's partially blind she can't do a thing. Now she has done her research and she's refusing to take the C3R treatment which all the patient of KC do, as well as saying she can't stay on lenses her whole life. She wants her perfect natural vision back and doesn't want to go through any surgery. If sclerals give her near perfect vision she doesn't want because she had to do so much things in her life which needs vision without any boundation like trekking and many water activities which she can never be able to do in her Lifetime and also said after taking of lenses she'll be blind again and it will given her daily anxiety and lenses can also be harmful in long term that's why she has decided to give up on everything. She's just taking anxiety medicines continuously and doesn't want to talk any therapist or not even any family members about it. Is there nothing we can do for her?? What are you all's opinion about it?

So I had the epithelial on CXL in 2016. I had dry eyes for about a year, but it was totally worth it in my opinion because I didn’t go blind. My vision improved for about four years. I just used eye drops it was fine.

10 years later, Miebo failed, I’m using Vevye, iVIZIA (gel and drops), refresh ointment at night with a mask, occasionally steroid drops, Bruder mask, I have punctal plugs, I have these really helpful and OK looking glasses (brand, “Ziena”.) I’m working on the scaleral lenses and the serum tears.

TLDR: is dry eyes —so dry that you have corneal thinning, caused by epi- on CXL or could this be an auto immune disease or something else?

I have a congenital eye condition called keratoconus. It makes using optics very awkward. I don't see a dot; I just see a smear.

So I'm wondering if there are other people out there with keratoconus who have dealt with this? What did you do?

TIA

Sorry bad english, not my first language

It's about 24 hours that both my corneal lenses are stucked under my upper eyelids, I also sleep with them because I don't know what to do anymore, should I go to the emergency room? I tried with a lot (very lot) of eye drop but they seem glued, please some advice?

It's only my third week with them and I surely have to improve how to wear them and took off

Based in NYC, have keratoconus, underwent cross linking about 5mo ago

I can achieve 20/40 with glasses and was told by my ophthalmologist to get scleral lenses.

I purchased eyemed bold as I saw both in this subreddit and online that the insurance covers costs when deemed medically necessary. Can anyone provide insight / detail the process they did to get scleral lenses?

I found an in network provider and scheduled an appointment but both I and the scheduling coordinator were unaware of how to go about the process.

Hey I’m getting my makeup done and getting some lashes glued on ,just temporary ones, for my brother‘s wedding and I’m going to wear my contacts that day of course. Should I put my contacts on before I get my makeup done or after? I’m concerned about makeup getting in my eye and things of that nature. I’m also concerned about messing up my makeup, trying to put the contacts in afterwards, you know because of all the liquid. Lasty I want to maximize my wearing time of my lenses. It will be a long day. We have pictures and then the ceremony, the reception and then the after party, my eyes do get tired before I do lol. Tips & Advice. I will have solution with me.

have a 16.5 mm scleral lens. I’ve been trying to put it in for a week, and I’ve only managed to get it in once. Even when I try to hold my upper eyelid by the eyelashes, I can’t get my upper eyelid to open upward. Would my chances of insert the lens increase if I tried putting it in without holding my upper eyelid? I recorded myself while holding both of my lids and whatever i do my lids is barely wide enough to insert the lens and i have extreme level of flinching, moving my head back.

If you’re leaving the house for more than 4 hours, what’s in your bag? List your must-have tools for on-the-go eye care.

Hello all!

Today I was diagnosed with Keratoconus PMD in my right eye. I’ve suffered since about 2020 with not having clear vision in my right eye. My left eye works overtime to correct these issues which causes really bad migraines.

I’ve worn eyeglasses since 2020 to help correct these migraines and it has worked. Today at my appointment my vision was the worst it’s been and I was formally diagnosed.

My question is where do I go from here? I’m in LA and am a veteran ( I learned I had this from an optometrist the VA sent me too. ) What treatments are there to possibly correct my right eye? This is all new to me and I’m very curious.

Thanks in advance!

Hi! So, I just got back from the optician, who told me in no uncertain terms (in a tone I could say very unsavory things about) that it is impossible that I have Kerataconus because I do not have high enough astigmatism. He made this assessment after looking at my eyes with the light wand thing for a while. (This was after I explicitly asked if their OCT machine was capable of corneal mapping before making the apt, they said yes, then at the appointment I was told it in fact is only for retinal health checks, but alas)

Here are some facts about me:

1. I was diagnosed with Keratoconus as a teenager, I believe after a scan that was probably corneal mapping. Unfortunately, I also had undiagnosed ADHD at the time and it went in one ear and out the other. Was never brought up again at standard optician appointments, I forgot about it.

2. I remembered this only upon seeing that study about ADHD and Keratoconus (lol)

3. I am 30 years old, and my prescription was stable for the better part of a decade. Then, last year, shifted from -6.50 (left) -7.0 (right) to -7 (left) -8.0 (right) within 6 months. As of the appointment I just had (around 6 months from the last) it is sitting at -7.25 (left) and -8.25 (right). I was just told this change is not clinically significant.

4. I have a diagnosed connective tissue disorder and MCAS

5. I take the drug Spironolactone for hormonal issues. During the time of the change in vision I happened to be experimenting with my dose of that.

6. I’ve had myopia since I was a kid, but did not alway have astigmatism.

7. My values are cyl -0.50 (L) -1.00 (R)

Look, obviously I will be thrilled if I do not have this! I have always dreamed of permanent vision correction, and if that’s still on the table, that’s fantastic news….

If this sounds like something I should write off, I will do so with glee. But I need to try new meds because of the hormonal impact on my MCAS symptoms, and I do not want to do that until I’m sure the big fluctuations aren’t the thing making my vision worse.

So, is what the optician said legit? No high astigmatism means no pointy cornea, guaranteed????

Any guidance and or confirmation of insanity is welcome 🥲🙏🏻

Edit: thanks everyone, I am going to find a private ophthalmologist and book an appointment just to make sure! I appreciate the feedback (and also will be going elsewhere for my contacts and glasses in future)

I’ve been using two drops of celluvisc because the fit isn’t perfect, but it’s so expensive.

Starting uni next month and I have keratoconus in both eyes. I recently had cross-linking and my vision is currently really bad, especially when it comes to recognising faces from a distance.

I’m mainly worried about socialising and going to clubs because I genuinely won’t be able to recognise people unless they’re close to me 😭

I probably won’t get my scleral lenses until around December. Has anyone been in a similar situation and how did you manage until you got your lenses?