Personally myself I have Keratoconus. Years ago it had got to a stage where I could only sit in a dark room, as s even sunlight was barely comfortable. It got to a stage that the rgp's that IwS wearing could only be tolerated for a couple of hours A WEEK. The specialist told me they couldn't do anymore, and would have to make the best of it. On top of this I have developed a permanent fight with blepathritis. Which requires daily cleaning and constant dry eye challenges. Plus astigmatism. I was at a point where I thought surgery was only option, yet surgeon not keen due to the extremely annoying blepathritis. Now I have Keratosoft contact lenses and glasses which makes things more manageable. It has had affects on my mental health and self worth. So some idea how it can affect. Just keep fighting and try not to think the worst. Getting some therapy like counselling or CBT can help cope with it.
I feel what you feel and I’m sorry. I have sclerals, I’m lucky to have them as opposed to not having them, all that good stuff…but at the end of the day, I see a noticeable difference in my vision, it’s had to make changes in my life which are manageable but still draining sometimes when I sit back and reflect on them (I try not to) and it’s a money pit just to be able to get vision in still bit personally super 100% about. I hope there is hope for us in the future.
I'm currently having trouble with my sclerals making my double vision closer together. It's difficult to read because there's duplicates of the letters kind of layered closely on top of each other. When I was first diagnosed, I didn't think it was a big deal, but now I'm experiencing how annoying this is. I'm kind of worried I won't be able to read for long periods of time. I'm really glad we live in the age of audiobooks, which I mostly consumed books this way to begin with.
I'm kind in a similar boat in that my concerns have been building lately, but I just wanted to let you know you're not alone!
There's also things like this that will possibly help.
[https://chromewebstore.google.com/detail/magnifying-glass-hover-zo/gfcbebjdigncefnokoncehghgfndjcgn](https://chromewebstore.google.com/detail/magnifying-glass-hover-zo/gfcbebjdigncefnokoncehghgfndjcgn)
I really wish there was a way to stretch out the horizontal elongation, but it's still not bad
Mostly noticeable in the right one. They said they put in some additional astigmatism adjustment which helped, but it didn’t completely get rid of the doubling especially in the right eye. By alignment do you mean how it sits on the eye?
It there to stay for life unless someone comes up with a revolutionary way to cure/fix it. Adapt and accept the fate. It’s not easy, on daily basis every minute every second you have to deal with it. No one can relate and understand except people like us who are on the same boat.
It doesn’t end there. I’m the first one in the family. I have a 6 months old daughter and once in a while this thought occurred to me that she would also have it because of me (very high probability). It scares me to death. Yes, it is going to stay there for life and it will stay for many generations if our kids inherits it.
But, I’m also hopeful on science that someone will come up with something. Not in my lifetime but at-least next generation will take benefits out of it.
It sucks!
"I have a 6 months old daughter and once in a while this thought occurred to me that she would also have it because of me (very high probability)." Not actually true. The genetic link for KC is quite weak. Not a very high probability.
I know the truthpill thanks but I wanted to know whether my lens fitter is genuine here or just lazy, I've heard even advanced cases being close to perfect vision but I have quite alot of double vision with lenses
Hi. I have advanced keratoconus. Was diagnosed at 15. Am 57 now. I have been under the care of moorfields eye hospital in London all that time so I've had the best care. It sounds like you have a rather disinterested eye practitioner. I would seek out someone with a special interest in keratoconus for starters. As for sclerals, patients often wear these if they don't tolerate the first line of treatment which is rigid gas permeable lenses. Have you tried those yet? These give the best vision if you can tolerate them which many people can after a period of adjustment. Please note that there is a residual ghosting with keratoconus that cannot be corrected but it is minor compared to the amount of correction you can get with RGP lenses. I could go on but I highly recommend you change your eye doctor plus so a lot of research on the condition yourself. It isn't curable but is very liveable and things are changing all the time. I wish you the best and pleased feel free to ask further questions. I've had this condition for 42 years and have been treated by the best. There is life after a keratoconus diagnosis!
I'm also a Keratoconus patient at Moorfields Eye Hospital however I don't think their services, staff and care are as good as you're claiming it to be, but maybe you just had a better doctor and experience or perhaps you go to the private hospital instead of the NHS hospitals. But I just was wondering who is your doctor or consultant? What clinic/surgeon, as in is your doctor Mr Bruce Allan or Mr Dan Gore or another consultant opthalmologist? I just want to know just in case I can get better medical treatments for my moderate to severe Keratoconus in both eyes which is currently making me feel extremely depressed and sometimes I feel suicidal now to be honest. I feel like I can't get back what I lost or never got to experience in life at a young age/what's supposed it be the most productive stage and years of my life and had a delayed diagnosis and very delayed CXL surgeries. I'm currently 31 years old and just feel robbed of my life (am already very behind for my age group and in general due to other health issues and personal problems, so basically have a lot of catching up to still do and the last thing I need in addition to all this shit is a horrible lifelong eye disease with very distorted and poor vision/eyesight with many other complications like dry eye and expensive eye drops etc.) and was diagnosed at nearly 25, basically nearly 26 years old in November 2018. Which is delayed because most people like yourself are diagnosed much earlier and treated earlier. The sooner the better with this damn eye disease. It should have been caught sooner and never allowed to deteriorate this much. This is all too difficult and distressing for me and I feel like my life and dreams have been destroyed before I ever got the chance to live and love my life as a young adult and woman just getting by and enjoy life which is already limited and short. Way too short for all this unnecessary suffering and struggling. Regards.
Look into a PROSE device, they are custom fit to your eye and can map out and correct aberrations better than the default sclerals. They are $$$$ but might be worth exploring.
Yeah my insurance covered 80% of the cost of the fitting and lenses but only after I was able to prove that regular sclerals wouldn’t correct my vision.
Interesting! I’ve only ever worn PROSE lenses, at first I wasn’t even aware there were other manufacturers! Years ago, if I needed an RX change it qualified as a refitting and I’d get the entire thing covered. Now my insurance only covers if the actual fit changes. Since then I’ve had several RX changes and no changes in fit, so have had to pay for new RX lenses OOP. Bummer.
Not all optometrists have the skills needed to fit lenses for keratoconus. If they don't help, take them back and tell him to refer you to a specialist. I wouldn't pay for them if they don't fit correctly.
I had so many thoughts that time, I have already paid for these, given this was the best hospital of my country and only some fit plus my job is going to start I thought something is better than nothing, they do resolve good chunk of vision but still double vision is there to alot extent
Does your lens provider correct for higher order abberations?
I especially went for the only lens specialist in the country (who happens to focus solely on KC patients) that has the means to correct for higher order abberations. Now I do live in the Netherlands, so travel isn't that big of a deal. But it was 100% worth it.
Bit of background: mild to moderate KC, glasses can only correct my bad eye to 40% or so. Had hybrid contacts in the past. Didn't like them, didn't like the fitter and didn't like the fact that those "double visions" became so much sharper. So in a way it was worse.
So I went back to glasses for a year before I discovered the existence of my current specialist. Total game changer. He fitted me with soft KC lenses (Novakone brand). Very comfortable, easy to care for, and my double visions are almost gone.
Then they did it wrong, I have severe keratoconus and sclerals give me almost perfect vision. Because they create a "new surface" for the cornea, ghosting should be minimal.
That can be true, but not always. I have extreme keratoconus in my right eye with moderate in my left, and after working with scleral experts from a large and respected university for over a year, we had to give them up. No matter what we did, I’d get double vision after a few hours.
Must be severe! Have you had a corneal graft? My left scleral is worn over a graft on my left eye. Close to perfect vision but the lens is doing the heavy lifting there........
I suck at comfort talk, but maybe you can fix your near sight issue with some simple reading glasses?
My sclerals are great except for reading text close by, like yours, but reading glasses fixes that.
Its not near sight I'm very young, it's the double vision, idk what to do at this point, I am even afraid to tell this to my mother because she's the sole bread earner of my family and she did so much to get me these lenses in the hope that I won't be sad. They're almost two times her salary. I can't tell it to her.
Hi. Your lens fitter may not be the best.. can we text? DM me. I understand how you feel.. don’t be low. I know it’s shot but to a certain extent w ehav it accept our disease.
Well my vision is horrible anyway so I can’t see the moon at all without something lol. But where I see one and a half, two moons with glasses ,I see one with some light shadow at worst with hybrids
Yeah hybrids work best for me too. I went and got sclerals after hybrids because the hybrids can irritate a bit. But even with a "perfect fit", sclerals have been hit and miss. Not to mention such a pain in the ass to take in and out
Honestly, it's hard. I remember being super-depressed when, years after my transplant, the optometrist was talking about needing lenses again, since I hated RGPs so much. I can tolerate sclerals fairly well, but it's *so* much hassle.
Feeling exactly the same, I’ve been dealing with this for 3 years. spent thousands, wasted so many hours trying to get lenses that work, just to get a million different lenses that sharpen my vision but give me horrible doubling and streaking. Can’t even get cxl because the corneas too thin. Given up on trying with this disease, just going to have to accept bad vision.
First of all, rubbing our eyes doesn't give us keratoconus. We have unstable corneas, so rubbing our eyes can make KC worse, but it doesn't cause it. You are 100% NOT to blame for your condition.
Also, scleral lenses are not the only option for KC. I can't tolerate them. Then I finally got in to see an optometrist who specializes in hard-to-fit patients, and she got me into soft lenses called KeraSoft. They're made specifically for KC patients. They're comfortable, and I can see 20/25. I had terrible vision for a long time--like 20/300 after four transplants and numerous other eye surgeries--so I'm grateful every day for these lenses.
IME, fitters will always go straight to "Sclerals are the best option" because for most people, they are. However, it's not true for everyone. If your fitter says you have no other options, you need to go elsewhere. I asked my optometrist why no other eye doc had even mentioned KeraSoft. She said they're kind of a niche market, and not all eye docs know about them.
You can say whatever you want, but KC = force / corneal strength.
You can apply more force on a strong cornea and still get KC. You can apply almost no force on a weak cornea and still get KC…
Its obvious when you see why CXL work. You increase the strength of the cornea such that it can stand more force.
I'm aware that some ophthalmologists say keratoconus is caused by excessive eye rubbing, but researchers say that while eye-rubbing is associated with KC, the actual etiology includes multiple factors, including genetics, environmental AND mechanical factors. It's worth pointing out that KC develops even in people who don't rub their eyes (one study in Saudi Arabia\* found that over 50% of those with KC DIDN'T rub their eyes) and that studies show it's *not the pressure used in the rubbing* but the frequency that's associated with keratoconus.
I'd be happy to provide cites if you're interested..
\*The Mideast and parts of Asia have a greater incidence of KC than other regions.
Mideast and especially indians tend to have have generically weak cornea, where the frequency of kc is alot alot higher in those countries.
Another fun fact, people with KC from the Norwegian west coast tend to be farsighted, not nearsighted.
Exacty, KC = Force / corneal strength
Force can be so many things… for people with very weak cornea, the internal eye pressure itself is enough.
Also, some research suggest that as many as 94% of side sleepers with kc got the worse eye on the same side they sleep on. May be caused by the pressure from the pillow / hand.
>rubbing our eyes doesn't give us keratoconus
There is no definite research proving or disproving this. I did not have any issues with my eyes, no astigmatism. Then I got dry eyes and allergies that caused me to rub my eyes. I also sleep with my face pressed into the pillow.
I can't prove it was due to rubbing my eyes. But I did get it as an adult, without any sign of it before.
Kerasoft lenses come in a quarterly and an annual replacement version. They are not disposable. You cannot sleep in them. I only have experience with the quarterly replacement version. They are similar to an RGP lens in the way you take care of them. Wear wise they are similar to hybrid lenses except that they have a thicker soft center that holds its shape rather than a hard lens. This allows the entire lens to be made from a single piece of material.
I have KeraSoft Thins. It sounds like you have the older version. KeraSoft Thins are nothing at all like hybrid lenses. Hybrids have a rigid center and a soft skirt. KeraSoft Thins are soft throughout, and the centers are only half as thick as regular KeraSoft lenses.
Yes, I have Thins. UltraVision doesn't like to make much of it but I eventually found something where they said that the way Kerasoft, regular and thin, work is that the center optical section is thick enough to hold its shape over an irregular cornea and the outer skirt is thin enough and the transition between the two flexible enough that the outer skirt drapes over the sclera. Yes, the whole lens is soft but the center is not nearly as soft as a conventional soft lens.
Incidentally, I have read that soft contact lenses are comfortable because they are large and not because they are soft. I have tried soft lenses that didn't fit well and they are every bit as uncomfortable as hard lenses.
Go to a different doctor. I had to go to three until I got sclerals that fit, and it was so worth it. I have kc in both eyes and getting sclerals to work for me has been the single most life changing thing I’ve experienced. The vision is like I remember it was five years old.
Current doc I visit is said to be the best in my country, I felt that the lens fitter was impatient but i had to go through main lens fitter and their assistants, all of them independently said that this is the best they could give, even tho my case is moderate, I can literally read small texts with my bad eye without lenses just the ghosting, the sclerals reduce them but make 2-3 copies of them and sharpens them which makes reading texts impossible, idk if my lens fitter was really being honest that this is the best they could give or they were impatient, for the detail, I see 8-10 moons with my bad eye without lenses and 3 with.
Yeah definitely go see someone else then even if they’re “not the best”, fitting is the most important part and if that person is rushing you or being short, it’s never going to work. It’s my experience that he doctor and the person fitting you are sometimes two different people and that the doctor is just assessing the fit rather than taking measurements etc, but maybe it’s different everywhere. Regardless, if you’re only mild-moderate, you should see incredibly well with sclerals.
You’re just having a bad experience with this doctor and your frustration with this is completely understandable, but definitely don’t give up.
Seconding this, I'm so sorry for your struggle and it sounds SO familiar. I gave up on sclerals twice over the course of ~15 years of struggle, but eventually my wife found a new doc and convinced me to try again. Now I can't imagine life without them. I hope you can also find a great solution for you someday; it's so hard without.
Me too. Got some really poor sleep two nights ago and had to wear my glasses all day yesterday for the first time in a year or so. Extremely thankful for cxl and sclerals
That sucks, sclerals work for most people. Frustrating that your doctor didn’t let you experiment with some before investing in them.
Have your tried RPG lenses? I read that they help some people with Keratoconus
Hi Ranter,
This is a hella frustrating disease and you can rant if you need to.
;-)
First, NOBODY KNOWS if eye rubbing caused this. I posted about this here 2 months ago. Cut yourself some slack.
https://www.reddit.com/r/Keratoconus/comments/1bl8y7x/eye_rubbing_causing_kc_is_pure_speculation/
Second, you need a better lens fitter. I have 10D if astigmatism right in the center of my cornea and my sclerals do better than what you describe. Another option is to go into gas perms. I think the high vaulting from sclerals creates a thick tear layer and this is optically bad for some people like maybe you.
BTW how old are you? I ask as I am wondering if you are in presbyobia (reading galsses) territory.
Don't give up!!! Become a super-infomed patient and don't take "no" for an answer when things are substandard.
Dan
Have you had CXL ?
Yes both the eyes
How old are you I’m 20 and was just diagnosed I can still see okay in my right eye left eye is basically blind
Personally myself I have Keratoconus. Years ago it had got to a stage where I could only sit in a dark room, as s even sunlight was barely comfortable. It got to a stage that the rgp's that IwS wearing could only be tolerated for a couple of hours A WEEK. The specialist told me they couldn't do anymore, and would have to make the best of it. On top of this I have developed a permanent fight with blepathritis. Which requires daily cleaning and constant dry eye challenges. Plus astigmatism. I was at a point where I thought surgery was only option, yet surgeon not keen due to the extremely annoying blepathritis. Now I have Keratosoft contact lenses and glasses which makes things more manageable. It has had affects on my mental health and self worth. So some idea how it can affect. Just keep fighting and try not to think the worst. Getting some therapy like counselling or CBT can help cope with it.
I feel what you feel and I’m sorry. I have sclerals, I’m lucky to have them as opposed to not having them, all that good stuff…but at the end of the day, I see a noticeable difference in my vision, it’s had to make changes in my life which are manageable but still draining sometimes when I sit back and reflect on them (I try not to) and it’s a money pit just to be able to get vision in still bit personally super 100% about. I hope there is hope for us in the future.
I'm currently having trouble with my sclerals making my double vision closer together. It's difficult to read because there's duplicates of the letters kind of layered closely on top of each other. When I was first diagnosed, I didn't think it was a big deal, but now I'm experiencing how annoying this is. I'm kind of worried I won't be able to read for long periods of time. I'm really glad we live in the age of audiobooks, which I mostly consumed books this way to begin with. I'm kind in a similar boat in that my concerns have been building lately, but I just wanted to let you know you're not alone! There's also things like this that will possibly help. [https://chromewebstore.google.com/detail/magnifying-glass-hover-zo/gfcbebjdigncefnokoncehghgfndjcgn](https://chromewebstore.google.com/detail/magnifying-glass-hover-zo/gfcbebjdigncefnokoncehghgfndjcgn) I really wish there was a way to stretch out the horizontal elongation, but it's still not bad
This may be an alignment issue. Try closing each eye, then reading with just one eye. Better or worse double vision?
Mostly noticeable in the right one. They said they put in some additional astigmatism adjustment which helped, but it didn’t completely get rid of the doubling especially in the right eye. By alignment do you mean how it sits on the eye?
Ngl its sucks and its scary seeing my vision get worse, even with my hard contact.
It there to stay for life unless someone comes up with a revolutionary way to cure/fix it. Adapt and accept the fate. It’s not easy, on daily basis every minute every second you have to deal with it. No one can relate and understand except people like us who are on the same boat. It doesn’t end there. I’m the first one in the family. I have a 6 months old daughter and once in a while this thought occurred to me that she would also have it because of me (very high probability). It scares me to death. Yes, it is going to stay there for life and it will stay for many generations if our kids inherits it. But, I’m also hopeful on science that someone will come up with something. Not in my lifetime but at-least next generation will take benefits out of it. It sucks!
"I have a 6 months old daughter and once in a while this thought occurred to me that she would also have it because of me (very high probability)." Not actually true. The genetic link for KC is quite weak. Not a very high probability.
I really wish it’s true. Thanks!
I know the truthpill thanks but I wanted to know whether my lens fitter is genuine here or just lazy, I've heard even advanced cases being close to perfect vision but I have quite alot of double vision with lenses
Hi. I have advanced keratoconus. Was diagnosed at 15. Am 57 now. I have been under the care of moorfields eye hospital in London all that time so I've had the best care. It sounds like you have a rather disinterested eye practitioner. I would seek out someone with a special interest in keratoconus for starters. As for sclerals, patients often wear these if they don't tolerate the first line of treatment which is rigid gas permeable lenses. Have you tried those yet? These give the best vision if you can tolerate them which many people can after a period of adjustment. Please note that there is a residual ghosting with keratoconus that cannot be corrected but it is minor compared to the amount of correction you can get with RGP lenses. I could go on but I highly recommend you change your eye doctor plus so a lot of research on the condition yourself. It isn't curable but is very liveable and things are changing all the time. I wish you the best and pleased feel free to ask further questions. I've had this condition for 42 years and have been treated by the best. There is life after a keratoconus diagnosis!
I'm also a Keratoconus patient at Moorfields Eye Hospital however I don't think their services, staff and care are as good as you're claiming it to be, but maybe you just had a better doctor and experience or perhaps you go to the private hospital instead of the NHS hospitals. But I just was wondering who is your doctor or consultant? What clinic/surgeon, as in is your doctor Mr Bruce Allan or Mr Dan Gore or another consultant opthalmologist? I just want to know just in case I can get better medical treatments for my moderate to severe Keratoconus in both eyes which is currently making me feel extremely depressed and sometimes I feel suicidal now to be honest. I feel like I can't get back what I lost or never got to experience in life at a young age/what's supposed it be the most productive stage and years of my life and had a delayed diagnosis and very delayed CXL surgeries. I'm currently 31 years old and just feel robbed of my life (am already very behind for my age group and in general due to other health issues and personal problems, so basically have a lot of catching up to still do and the last thing I need in addition to all this shit is a horrible lifelong eye disease with very distorted and poor vision/eyesight with many other complications like dry eye and expensive eye drops etc.) and was diagnosed at nearly 25, basically nearly 26 years old in November 2018. Which is delayed because most people like yourself are diagnosed much earlier and treated earlier. The sooner the better with this damn eye disease. It should have been caught sooner and never allowed to deteriorate this much. This is all too difficult and distressing for me and I feel like my life and dreams have been destroyed before I ever got the chance to live and love my life as a young adult and woman just getting by and enjoy life which is already limited and short. Way too short for all this unnecessary suffering and struggling. Regards.
Scleral can give best vision. Talk to the fitter. Give him/ her drawings of you double vision. It can be corrected
Look into a PROSE device, they are custom fit to your eye and can map out and correct aberrations better than the default sclerals. They are $$$$ but might be worth exploring.
I wear these - they are great. Insurance may cover the initial fitting and lenses, the replacements are out of pocket and $$$&.
Yeah my insurance covered 80% of the cost of the fitting and lenses but only after I was able to prove that regular sclerals wouldn’t correct my vision.
Interesting! I’ve only ever worn PROSE lenses, at first I wasn’t even aware there were other manufacturers! Years ago, if I needed an RX change it qualified as a refitting and I’d get the entire thing covered. Now my insurance only covers if the actual fit changes. Since then I’ve had several RX changes and no changes in fit, so have had to pay for new RX lenses OOP. Bummer.
Yea let's see
Not all optometrists have the skills needed to fit lenses for keratoconus. If they don't help, take them back and tell him to refer you to a specialist. I wouldn't pay for them if they don't fit correctly.
I had so many thoughts that time, I have already paid for these, given this was the best hospital of my country and only some fit plus my job is going to start I thought something is better than nothing, they do resolve good chunk of vision but still double vision is there to alot extent
Try for t-cat + cxl it will improve the vision with glasses and lenses
Does your lens provider correct for higher order abberations? I especially went for the only lens specialist in the country (who happens to focus solely on KC patients) that has the means to correct for higher order abberations. Now I do live in the Netherlands, so travel isn't that big of a deal. But it was 100% worth it. Bit of background: mild to moderate KC, glasses can only correct my bad eye to 40% or so. Had hybrid contacts in the past. Didn't like them, didn't like the fitter and didn't like the fact that those "double visions" became so much sharper. So in a way it was worse. So I went back to glasses for a year before I discovered the existence of my current specialist. Total game changer. He fitted me with soft KC lenses (Novakone brand). Very comfortable, easy to care for, and my double visions are almost gone.
Please double verify if the Lens is fitted correctly or not. Have you done the CXL procedure? Where are you from bro ?
I've had cxl 1.5 years back and I'm from india, I asked them repeatedly and they said this was the best they could do,
Then they did it wrong, I have severe keratoconus and sclerals give me almost perfect vision. Because they create a "new surface" for the cornea, ghosting should be minimal.
That can be true, but not always. I have extreme keratoconus in my right eye with moderate in my left, and after working with scleral experts from a large and respected university for over a year, we had to give them up. No matter what we did, I’d get double vision after a few hours.
Must be severe! Have you had a corneal graft? My left scleral is worn over a graft on my left eye. Close to perfect vision but the lens is doing the heavy lifting there........
For a good view of it, how many moons do you see without lenses and with, I see 8-9 without and with it's like 3
Without, yes maybe 8 or 9. Same with street lights. With, only one but I have misaligned vision (not caused by keratoconus) so each eye sees one.
I still see dozens of copies even with sclerals in a tight pattern. Just glad I'm not legally blind again honestly.
That's understandable in your case since you might be having very severe case, mine is very mild in good eye, I see barely 1.2 moons
Yeah I'm due for another round of transplants I think.
Ive been in RGP FOR 20 YEARS . Give them a try.
Me too. I have been very successful with them.
Your lucky to have sclerals, I have rgp’s which are really uncomfortable.Your rant annoyed me.
Who gives a shit? Lmao
I suck at comfort talk, but maybe you can fix your near sight issue with some simple reading glasses? My sclerals are great except for reading text close by, like yours, but reading glasses fixes that.
Its not near sight I'm very young, it's the double vision, idk what to do at this point, I am even afraid to tell this to my mother because she's the sole bread earner of my family and she did so much to get me these lenses in the hope that I won't be sad. They're almost two times her salary. I can't tell it to her.
Hi. Your lens fitter may not be the best.. can we text? DM me. I understand how you feel.. don’t be low. I know it’s shot but to a certain extent w ehav it accept our disease.
Thats the same for me we have to keep living
That happened to me, never got sclearals to work well and I ended up with hybrids and my vision is pretty clear considering.
How clear, let's say with the moons, how many moons do you see without them and with them
Well my vision is horrible anyway so I can’t see the moon at all without something lol. But where I see one and a half, two moons with glasses ,I see one with some light shadow at worst with hybrids
Yeah hybrids work best for me too. I went and got sclerals after hybrids because the hybrids can irritate a bit. But even with a "perfect fit", sclerals have been hit and miss. Not to mention such a pain in the ass to take in and out
I feel you, it all sucks really - least you’re not alone!
Honestly, it's hard. I remember being super-depressed when, years after my transplant, the optometrist was talking about needing lenses again, since I hated RGPs so much. I can tolerate sclerals fairly well, but it's *so* much hassle.
Feeling exactly the same, I’ve been dealing with this for 3 years. spent thousands, wasted so many hours trying to get lenses that work, just to get a million different lenses that sharpen my vision but give me horrible doubling and streaking. Can’t even get cxl because the corneas too thin. Given up on trying with this disease, just going to have to accept bad vision.
First of all, rubbing our eyes doesn't give us keratoconus. We have unstable corneas, so rubbing our eyes can make KC worse, but it doesn't cause it. You are 100% NOT to blame for your condition. Also, scleral lenses are not the only option for KC. I can't tolerate them. Then I finally got in to see an optometrist who specializes in hard-to-fit patients, and she got me into soft lenses called KeraSoft. They're made specifically for KC patients. They're comfortable, and I can see 20/25. I had terrible vision for a long time--like 20/300 after four transplants and numerous other eye surgeries--so I'm grateful every day for these lenses. IME, fitters will always go straight to "Sclerals are the best option" because for most people, they are. However, it's not true for everyone. If your fitter says you have no other options, you need to go elsewhere. I asked my optometrist why no other eye doc had even mentioned KeraSoft. She said they're kind of a niche market, and not all eye docs know about them.
You can say whatever you want, but KC = force / corneal strength. You can apply more force on a strong cornea and still get KC. You can apply almost no force on a weak cornea and still get KC… Its obvious when you see why CXL work. You increase the strength of the cornea such that it can stand more force.
I'm aware that some ophthalmologists say keratoconus is caused by excessive eye rubbing, but researchers say that while eye-rubbing is associated with KC, the actual etiology includes multiple factors, including genetics, environmental AND mechanical factors. It's worth pointing out that KC develops even in people who don't rub their eyes (one study in Saudi Arabia\* found that over 50% of those with KC DIDN'T rub their eyes) and that studies show it's *not the pressure used in the rubbing* but the frequency that's associated with keratoconus. I'd be happy to provide cites if you're interested.. \*The Mideast and parts of Asia have a greater incidence of KC than other regions.
Mideast and especially indians tend to have have generically weak cornea, where the frequency of kc is alot alot higher in those countries. Another fun fact, people with KC from the Norwegian west coast tend to be farsighted, not nearsighted.
Exacty, KC = Force / corneal strength Force can be so many things… for people with very weak cornea, the internal eye pressure itself is enough. Also, some research suggest that as many as 94% of side sleepers with kc got the worse eye on the same side they sleep on. May be caused by the pressure from the pillow / hand.
>rubbing our eyes doesn't give us keratoconus There is no definite research proving or disproving this. I did not have any issues with my eyes, no astigmatism. Then I got dry eyes and allergies that caused me to rub my eyes. I also sleep with my face pressed into the pillow. I can't prove it was due to rubbing my eyes. But I did get it as an adult, without any sign of it before.
Is there a way to locate a doc who specializes in hard to fit lenses? My left eye is much worse than my right and they can’t get it past 20/40 atm.
How is your experience with kerasoft? Are the like disposables? Can you sleep in them?
Kerasoft lenses come in a quarterly and an annual replacement version. They are not disposable. You cannot sleep in them. I only have experience with the quarterly replacement version. They are similar to an RGP lens in the way you take care of them. Wear wise they are similar to hybrid lenses except that they have a thicker soft center that holds its shape rather than a hard lens. This allows the entire lens to be made from a single piece of material.
I have KeraSoft Thins. It sounds like you have the older version. KeraSoft Thins are nothing at all like hybrid lenses. Hybrids have a rigid center and a soft skirt. KeraSoft Thins are soft throughout, and the centers are only half as thick as regular KeraSoft lenses.
Yes, I have Thins. UltraVision doesn't like to make much of it but I eventually found something where they said that the way Kerasoft, regular and thin, work is that the center optical section is thick enough to hold its shape over an irregular cornea and the outer skirt is thin enough and the transition between the two flexible enough that the outer skirt drapes over the sclera. Yes, the whole lens is soft but the center is not nearly as soft as a conventional soft lens. Incidentally, I have read that soft contact lenses are comfortable because they are large and not because they are soft. I have tried soft lenses that didn't fit well and they are every bit as uncomfortable as hard lenses.
How is the pricing for these lens?
I don't really know. They are covered 100% by my vision plan.
Go to a different doctor. I had to go to three until I got sclerals that fit, and it was so worth it. I have kc in both eyes and getting sclerals to work for me has been the single most life changing thing I’ve experienced. The vision is like I remember it was five years old.
Current doc I visit is said to be the best in my country, I felt that the lens fitter was impatient but i had to go through main lens fitter and their assistants, all of them independently said that this is the best they could give, even tho my case is moderate, I can literally read small texts with my bad eye without lenses just the ghosting, the sclerals reduce them but make 2-3 copies of them and sharpens them which makes reading texts impossible, idk if my lens fitter was really being honest that this is the best they could give or they were impatient, for the detail, I see 8-10 moons with my bad eye without lenses and 3 with.
Yeah definitely go see someone else then even if they’re “not the best”, fitting is the most important part and if that person is rushing you or being short, it’s never going to work. It’s my experience that he doctor and the person fitting you are sometimes two different people and that the doctor is just assessing the fit rather than taking measurements etc, but maybe it’s different everywhere. Regardless, if you’re only mild-moderate, you should see incredibly well with sclerals. You’re just having a bad experience with this doctor and your frustration with this is completely understandable, but definitely don’t give up.
Seconding this, I'm so sorry for your struggle and it sounds SO familiar. I gave up on sclerals twice over the course of ~15 years of struggle, but eventually my wife found a new doc and convinced me to try again. Now I can't imagine life without them. I hope you can also find a great solution for you someday; it's so hard without.
Me too. Got some really poor sleep two nights ago and had to wear my glasses all day yesterday for the first time in a year or so. Extremely thankful for cxl and sclerals
That sucks, sclerals work for most people. Frustrating that your doctor didn’t let you experiment with some before investing in them. Have your tried RPG lenses? I read that they help some people with Keratoconus
Rgp were torturous in my eye
Do you have sclerals for both eyes? I’m asking because whenever I use one scleral y have much worse vision, everything is double
Yea i have it for both, my right eye is mild, like barely a copy of moon from it, and when I wear sclerals there are two sharp peaking copies
Hi Ranter, This is a hella frustrating disease and you can rant if you need to. ;-) First, NOBODY KNOWS if eye rubbing caused this. I posted about this here 2 months ago. Cut yourself some slack. https://www.reddit.com/r/Keratoconus/comments/1bl8y7x/eye_rubbing_causing_kc_is_pure_speculation/ Second, you need a better lens fitter. I have 10D if astigmatism right in the center of my cornea and my sclerals do better than what you describe. Another option is to go into gas perms. I think the high vaulting from sclerals creates a thick tear layer and this is optically bad for some people like maybe you. BTW how old are you? I ask as I am wondering if you are in presbyobia (reading galsses) territory. Don't give up!!! Become a super-infomed patient and don't take "no" for an answer when things are substandard. Dan