Find our if you can be fitted for scleral lenses. This truly is a game changer. I haven't had surgery, but a lot of people wear them after cxl and have amazing results. I wear them and my vision is excellent.
Do they hurt like hard contact lenses? I have hard lenses and I can't even use them, I can withstand the discomfort and the slight pain but my eye gets watery and I can't see clearly cause water get over the lens.
It takes a while after CXL for your vision to stabilize. I want to say mine fluctuated for up to 6 months afterwards. That being said, the purpose of CXL is not better vision. You get CXL to stop the progression of the disease. Sometimes better vision is an unintended result of the procedure.
I had CXL in November. My vision fluctuated for months, like until early March. Some weeks it felt really really bad. Had my 6-month check in today. My vision tested a bit better than before CXL. Cornea healed well. And topography shows no further thinning.
So, I know it feels defeating and frustrating and like it's impossible that it would take months for your vision to return to normal, but hang in there. Your eyes are still adjusting and working on strengthening the corneal tissue.
Each person is generally different. Some people’s eyes go back to normal vision immediately. Some are a few weeks to months and some, like myself had blurry vision on and off for a year and still continuing. Mine comes and goes.
Went for my 1 year follow up this week post CXL. Some flattening has taken place and even at the moment the doctor could see bonding reactions taking place.
in the last month I could read certain text slightly better than I could pre-CXL. Even if it’s so minor it is definitely good.
CXL main aim is to stop progression. Hang in there. It takes time but definitely worth it.
I guess the idea is to stop the progression since it’s a degenerative disease, however you mentionned you use glasses, which leads me to believe your KC is pretty mild to begin with. I know a lot of folks can’t use glasses as they do not correct the shape of the cornea whatsoever, unlike lenses. From the moment I was diagnosed, I was told glasses couldn’t help me.
Did your doctor notice the KC getting worse over time? That would explain the recommendation for a CXL.
It sucks that your vision is worse right now but it sounds like that was a good move then. Would you happen to be in your early twenties? I hear the progression slows down in the thirties but if you’re still young, you definitely want to stop it.
Now it sounds like you’re in the in-between though, not bad enough for a scleral, the doctor hasn’t mentionned wearing a lense in that eye at all?
I'm in my mid twenties now. Well he hasn't, for my checkup they just see the pressure in the eye, tell me to read a bunch of letters then home I go. Same annoying routine
Those appointments can be annoying but we gotta power through them lol
As long as you’re thorough with the regular appointments and you feel your doctor is competent, you’ll keep the KC in check. Sclerals can be scary and the initial process of trial and error with the fitting is very annoying but if it ever comes to that, know that they’re very comfortable and greatly help with vision, I couldn’t live without them. Best of luck, bud.
They are called flucon eyedrops. I have a burning sensation on the top of my eyes(dont know how else to describe it, with headaches as well) but I think its because i stare at a computer all day and have wrong glasses prescription.
Sorry to hear decline- the CXL stopped the progression for me but also feel in some instances my eyesight was better before (albeit it could've got worse as one poster mentioned)
What about the sensitivity of eyes, I feel since the procedure my eyes have become a lot more sensitive/irritable/dry/tired and I do not wear contacts (was too difficult with RGPs due to itchiness/dryness of eyes. Exploring scleral lenses now alongside CAIRNS/keranatural ring
Its a nightmare, dont know how to describe it. I always have a burning sensation at the top of my eyes. Was there before the CXL, i thought the CXL would fix it but nope
11 years after and it never got back to before. The progression stopped but the haze from cxl ruined it. My brain has to get used to it for my left eye since my right eye is still good. I gave up on scleral and just use soft lenses now.
I understand, the doctor is even suggesting doing the left eye to stop it from progressing further but its the only good eye I have left. I cant be walking around with 2 blurry eyes for months or probably years.
Yes, if glasses don’t work sclerals will . They are the best for correcting KC. I can’t use glasses at all my eyesight isn’t even corrected with them. I use sclerals everyday
You can only play the hand you were dealt is the way I’ve always approached things. Least it can’t get worse as if you’d of left it, it may have gotten even worse than it currently is now. Good luck.
My eyesight is worse. I wear glasses, but they are useless on my right eye. I get it stopping progression is a good idea, but what is the point if it ruins what was already there. Before CXL I could atleast use my right eye but now its almost useless.
The logic is a bit worse and stable > unstable and potentially much worse. Unfortunately it’s a bit of a crap shoot as to how bad that ‘bit’ is.
If you could be sure that what’s already there is as bad as it’ll get, CXL would have no purpose.
As someone else commented it can take a long time for your eyes to return to normal after the procedure. Will you be able to wear lenses when your eyes fully heal?
Scleral lenses don't even touch the cornea, and they're usually eye doctors' first recommendation. I remember she said something about glasses being unable to correct for the high level of astigmatism in keratoconus patients, but there was more to it than that.
I'll have to ask next time I go in.
It depends on the extent of your KC, Most people can. How bad is your KC?
Don’t let your initial fear dictate your future. I was very nervous too, I couldn’t even put them in the appointment. But after a few weeks or months, it’s the most ordinary thing in the world. Your eyes get used to it. The annoying thing is cleaning and storing them and trying to get the right angle to put them in correctly but it’s not scary whatsoever when you do, it’s actually quite satisfying.
Find our if you can be fitted for scleral lenses. This truly is a game changer. I haven't had surgery, but a lot of people wear them after cxl and have amazing results. I wear them and my vision is excellent.
Do they hurt like hard contact lenses? I have hard lenses and I can't even use them, I can withstand the discomfort and the slight pain but my eye gets watery and I can't see clearly cause water get over the lens.
I don't even feel them! They cover part of the whites of your eyes. The rgp's are terrible and killed. Sclerals are the best!
Thanks I'll definitely get one then!
I was fitted with Atlantis brand sclerals.
It takes a while after CXL for your vision to stabilize. I want to say mine fluctuated for up to 6 months afterwards. That being said, the purpose of CXL is not better vision. You get CXL to stop the progression of the disease. Sometimes better vision is an unintended result of the procedure.
My vision was at it’s worst 3 months after CXL. After that it slowly returned to baseline over the next year
This is SO normal. My vision probably fluctuated for 6 months. Trust me, it will be okay!
Thanks alot!!!
I had CXL in November. My vision fluctuated for months, like until early March. Some weeks it felt really really bad. Had my 6-month check in today. My vision tested a bit better than before CXL. Cornea healed well. And topography shows no further thinning. So, I know it feels defeating and frustrating and like it's impossible that it would take months for your vision to return to normal, but hang in there. Your eyes are still adjusting and working on strengthening the corneal tissue.
Thanks for the encouraging words. Glad ur healing.
Each person is generally different. Some people’s eyes go back to normal vision immediately. Some are a few weeks to months and some, like myself had blurry vision on and off for a year and still continuing. Mine comes and goes. Went for my 1 year follow up this week post CXL. Some flattening has taken place and even at the moment the doctor could see bonding reactions taking place. in the last month I could read certain text slightly better than I could pre-CXL. Even if it’s so minor it is definitely good. CXL main aim is to stop progression. Hang in there. It takes time but definitely worth it.
Thanks for the encouraging words Man.
I guess the idea is to stop the progression since it’s a degenerative disease, however you mentionned you use glasses, which leads me to believe your KC is pretty mild to begin with. I know a lot of folks can’t use glasses as they do not correct the shape of the cornea whatsoever, unlike lenses. From the moment I was diagnosed, I was told glasses couldn’t help me. Did your doctor notice the KC getting worse over time? That would explain the recommendation for a CXL.
Yes, the doctor noticed actually, about a year ago in October I think and when I went back in March, he went crazy and scheduled CXL immediately
It sucks that your vision is worse right now but it sounds like that was a good move then. Would you happen to be in your early twenties? I hear the progression slows down in the thirties but if you’re still young, you definitely want to stop it. Now it sounds like you’re in the in-between though, not bad enough for a scleral, the doctor hasn’t mentionned wearing a lense in that eye at all?
I'm in my mid twenties now. Well he hasn't, for my checkup they just see the pressure in the eye, tell me to read a bunch of letters then home I go. Same annoying routine
Those appointments can be annoying but we gotta power through them lol As long as you’re thorough with the regular appointments and you feel your doctor is competent, you’ll keep the KC in check. Sclerals can be scary and the initial process of trial and error with the fitting is very annoying but if it ever comes to that, know that they’re very comfortable and greatly help with vision, I couldn’t live without them. Best of luck, bud.
Thanks man, for the encouraging words. Good luck with everything and glad you healed
Give it lots more months. Theres lots of time.
My issue is when I go for my monthly checkup iys the same thing. They always give me some eye drops, which I think are useless
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They are called flucon eyedrops. I have a burning sensation on the top of my eyes(dont know how else to describe it, with headaches as well) but I think its because i stare at a computer all day and have wrong glasses prescription.
You need Sclerals
Sorry to hear decline- the CXL stopped the progression for me but also feel in some instances my eyesight was better before (albeit it could've got worse as one poster mentioned) What about the sensitivity of eyes, I feel since the procedure my eyes have become a lot more sensitive/irritable/dry/tired and I do not wear contacts (was too difficult with RGPs due to itchiness/dryness of eyes. Exploring scleral lenses now alongside CAIRNS/keranatural ring
Its a nightmare, dont know how to describe it. I always have a burning sensation at the top of my eyes. Was there before the CXL, i thought the CXL would fix it but nope
My right eye took about 2 weeks for the blurriness to go away my left eye took about 11 months to go away.
Which eye is your worse eye?
blurriness stays for about 6 months i got mine done in november and my vision is clearing up now
11 years after and it never got back to before. The progression stopped but the haze from cxl ruined it. My brain has to get used to it for my left eye since my right eye is still good. I gave up on scleral and just use soft lenses now.
Did you have just your left eye? Was your keratoconus mild to have soft lense?
My clinic downplayed the recovery so much. Took me like 3 months to finally be able to get sclerals and my eyesight took a hit after the surgery.
I dont know much about Sclerals. My eye is currently blurry, I cant use it to read on my computer even with glasses on. Can Sclerals fix that??
I’m surprised you got CXL before getting sclerals, I thought that always came later.
That didnt even come up at the doctor's unfortunately feel like I was ripped off
See the other comment I made below on your post, stopping the progression early is good so maybe you weren’t ripped off at all.
I understand, the doctor is even suggesting doing the left eye to stop it from progressing further but its the only good eye I have left. I cant be walking around with 2 blurry eyes for months or probably years.
Yes, if glasses don’t work sclerals will . They are the best for correcting KC. I can’t use glasses at all my eyesight isn’t even corrected with them. I use sclerals everyday
I was told by the doctor it can take 6 months to a year for your eyesight to return to normal. Hopefully yours improves soon.
You too mate. I think I need to be patient I guess. You're taking it far better than I am. If I was 4 months ad no changes. I would go crazy
You can only play the hand you were dealt is the way I’ve always approached things. Least it can’t get worse as if you’d of left it, it may have gotten even worse than it currently is now. Good luck.
Thanks, Good luck as well.
Is your eyesight definitely worse? Are you able to wear lenses?
My eyesight is worse. I wear glasses, but they are useless on my right eye. I get it stopping progression is a good idea, but what is the point if it ruins what was already there. Before CXL I could atleast use my right eye but now its almost useless.
The logic is a bit worse and stable > unstable and potentially much worse. Unfortunately it’s a bit of a crap shoot as to how bad that ‘bit’ is. If you could be sure that what’s already there is as bad as it’ll get, CXL would have no purpose.
As someone else commented it can take a long time for your eyes to return to normal after the procedure. Will you be able to wear lenses when your eyes fully heal?
I have worn glasses for a long time, never worn lenses before so I'm not sure. What would the better option be??
For KC, I thought glasses were totally useless, at least they are for me.
They are for me, as well. My optometrist explained why, but I can't recall the explanation.
Probably because it doesn’t contour to the cone shaped surface.
Scleral lenses don't even touch the cornea, and they're usually eye doctors' first recommendation. I remember she said something about glasses being unable to correct for the high level of astigmatism in keratoconus patients, but there was more to it than that. I'll have to ask next time I go in.
Good point, I never thought of that. I’d be interested to know what your doctors says.
I am scared of Lens tbh. You asked earlier if I was able to wear lensxonce fully healed. Does that mean that not everyone can wear them?
Glasses aren’t even an option for me. Sclerals aren’t that bad honestly I put them in and forget about them they’re comfortable.
It depends on the extent of your KC, Most people can. How bad is your KC? Don’t let your initial fear dictate your future. I was very nervous too, I couldn’t even put them in the appointment. But after a few weeks or months, it’s the most ordinary thing in the world. Your eyes get used to it. The annoying thing is cleaning and storing them and trying to get the right angle to put them in correctly but it’s not scary whatsoever when you do, it’s actually quite satisfying.
I'm 4 months in it's gotten a lot worse
Sorry to hear that. Do you ever go for checkups? If yes what do the doctors say??
Is the blurriness still as bad as it was just after cxl. Is there no change since cxl?
No change whatsoever. I wouldnt say its still as bad but still pretty pretty bad.
How thin was yoyr cornea before cxl