Does anyone else have warped corneas?

Posted by darlcrow @darlcrow, May 5, 2023

I'm wondering about the collagen cross linking for help slowing the progression and maybe have clearer vision.

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@darlcrow, by warped cornea, are you referring to keratoconus? Keratonconus is an eye condition in which the cornea — the clear, dome-shaped front of the eye — gets thinner and gradually bulges outward into a cone shape.

See the excerpt from Mayo Clinic
"If keratoconus is progressing, corneal collagen cross-linking may be indicated to slow it or stop it from getting worse. This treatment aims to stabilize the structure of the cornea. It may decrease the bulging of the cornea and help achieve better vision with glasses or contact lenses. This treatment also has the potential to prevent you from needing a cornea transplant in the future."
- Keratoconus Diagnosis & Treatment https://www.mayoclinic.org/diseases-conditions/keratoconus/diagnosis-treatment/drc-20351357

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@colleenyoung

@darlcrow, by warped cornea, are you referring to keratoconus? Keratonconus is an eye condition in which the cornea — the clear, dome-shaped front of the eye — gets thinner and gradually bulges outward into a cone shape.

See the excerpt from Mayo Clinic
"If keratoconus is progressing, corneal collagen cross-linking may be indicated to slow it or stop it from getting worse. This treatment aims to stabilize the structure of the cornea. It may decrease the bulging of the cornea and help achieve better vision with glasses or contact lenses. This treatment also has the potential to prevent you from needing a cornea transplant in the future."
- Keratoconus Diagnosis & Treatment https://www.mayoclinic.org/diseases-conditions/keratoconus/diagnosis-treatment/drc-20351357

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I'm not sure if they used that word. They always say warped corneas. However, I do remember once, they said the surface of my eye was too flat so I'm not so sure about the cone shape. I don't have much vision in my left eye even with a thick lens correction. Now, my right eye has started, and I'm scared to death. These doctors aren't suggesting much of anything and acting like I shouldn't be concerned. I have panic attacks over not being able to get clear vision or really any real vision in the left eye with glasses. I have thought about the Sclera lenses but I have tiny eyes and not sure if I could ever get them in and they are so expensive! For years now, I've been getting new updated prescription lenses ($300 to $600 each time) that I can't even see with by the time they are made and delivered to me which is usually about a week. I just sit and cry.

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@darlcrow

I'm not sure if they used that word. They always say warped corneas. However, I do remember once, they said the surface of my eye was too flat so I'm not so sure about the cone shape. I don't have much vision in my left eye even with a thick lens correction. Now, my right eye has started, and I'm scared to death. These doctors aren't suggesting much of anything and acting like I shouldn't be concerned. I have panic attacks over not being able to get clear vision or really any real vision in the left eye with glasses. I have thought about the Sclera lenses but I have tiny eyes and not sure if I could ever get them in and they are so expensive! For years now, I've been getting new updated prescription lenses ($300 to $600 each time) that I can't even see with by the time they are made and delivered to me which is usually about a week. I just sit and cry.

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Hasn’t anyone recommended corneal transplants. Had keratoconus so bad glasses were useless, had to piggyback contact lenses. Finally nothing helped,was legally blind . My only option were corneal transplants . What a difference taking my diseased corneas out and putting healthy ones in. 15 years later my vision got bad again and the only contacts I could wear are Scelera contacts. Vision is so crisp but to me not user friendly and extremely expensive. Takes way too long to put them in . ( my eyes are small also) so back to glasses. Now I have myopic degenerative in my left eye ( nothing to do with cornea transplants) just bad eyes. Any questions let me know

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@darlcrow

I'm not sure if they used that word. They always say warped corneas. However, I do remember once, they said the surface of my eye was too flat so I'm not so sure about the cone shape. I don't have much vision in my left eye even with a thick lens correction. Now, my right eye has started, and I'm scared to death. These doctors aren't suggesting much of anything and acting like I shouldn't be concerned. I have panic attacks over not being able to get clear vision or really any real vision in the left eye with glasses. I have thought about the Sclera lenses but I have tiny eyes and not sure if I could ever get them in and they are so expensive! For years now, I've been getting new updated prescription lenses ($300 to $600 each time) that I can't even see with by the time they are made and delivered to me which is usually about a week. I just sit and cry.

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I also suffer with eye problems but they just burn daily! I just wanted to send my prayers to you because I know personally about the crying daily, and to feel helpless. I finally made up in my mind to let go and let God, he’s the best doctor I know, and I have strong faith that one day I will either be healed or cured!🙏🏽

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@darlcrow

I'm not sure if they used that word. They always say warped corneas. However, I do remember once, they said the surface of my eye was too flat so I'm not so sure about the cone shape. I don't have much vision in my left eye even with a thick lens correction. Now, my right eye has started, and I'm scared to death. These doctors aren't suggesting much of anything and acting like I shouldn't be concerned. I have panic attacks over not being able to get clear vision or really any real vision in the left eye with glasses. I have thought about the Sclera lenses but I have tiny eyes and not sure if I could ever get them in and they are so expensive! For years now, I've been getting new updated prescription lenses ($300 to $600 each time) that I can't even see with by the time they are made and delivered to me which is usually about a week. I just sit and cry.

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It sounds to me like you need a medical consultation with a cornea specialist, and don't leave until you understand the name of the problem, the possible progression, and all options for management. I'm a retired eye doc, and it is the standard of care to make sure the patient understands, or a representative for the patient understands the condition. Please seek another opinion, with a doctor who will take the time to teach you about what is going on.

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@nancyoinnc

It sounds to me like you need a medical consultation with a cornea specialist, and don't leave until you understand the name of the problem, the possible progression, and all options for management. I'm a retired eye doc, and it is the standard of care to make sure the patient understands, or a representative for the patient understands the condition. Please seek another opinion, with a doctor who will take the time to teach you about what is going on.

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Yes, I started off with the top cornea specialist in the area. Not sure how this is going to sound to you, but I stopped seeing him because he is a very snarky, condescending person who has lost a lot of patients because of his nasty personality. When I see my regular eye doctor, he tells me the same thing, that nobody can stand the man, but he is absolutely the very best. I need to find someone else. I have to see someone in his office this afternoon to have my pressure checked and eyes dilated. I'm going to ask if this guy even does cross-linking because I don't see it listed under procedures that he performs. In fact, I only see one doctor in the area who does cross-linking and she's not in a location that I like to travel but I'll find a way to get to her if I have to.

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Go for a second opinion with the well known crosslinking doc, and ask for written report for clarity and for memory. Good luck.

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@darlcrow

Yes, I started off with the top cornea specialist in the area. Not sure how this is going to sound to you, but I stopped seeing him because he is a very snarky, condescending person who has lost a lot of patients because of his nasty personality. When I see my regular eye doctor, he tells me the same thing, that nobody can stand the man, but he is absolutely the very best. I need to find someone else. I have to see someone in his office this afternoon to have my pressure checked and eyes dilated. I'm going to ask if this guy even does cross-linking because I don't see it listed under procedures that he performs. In fact, I only see one doctor in the area who does cross-linking and she's not in a location that I like to travel but I'll find a way to get to her if I have to.

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I have found over the years that many of these specialists have let their title go to their head. Also retina specialists are cold and could care less about their patients. Have been thru several of them . No one is the best if they have an attitude. Eventually they will mess up with the grandiose image of themselves and I don’t want to be the patient that suffers for it.

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@ellerchim

I have found over the years that many of these specialists have let their title go to their head. Also retina specialists are cold and could care less about their patients. Have been thru several of them . No one is the best if they have an attitude. Eventually they will mess up with the grandiose image of themselves and I don’t want to be the patient that suffers for it.

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Exactly! Last time I saw my cornea specialist, I came out feeling like I had a mild case of PTSD. He's a horrible person.

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@nancyoinnc

It sounds to me like you need a medical consultation with a cornea specialist, and don't leave until you understand the name of the problem, the possible progression, and all options for management. I'm a retired eye doc, and it is the standard of care to make sure the patient understands, or a representative for the patient understands the condition. Please seek another opinion, with a doctor who will take the time to teach you about what is going on.

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I finally got some answers yesterday. I do not have Keratoconus. What they have been saying for years is warped corneas but yesterday, he said you actually have unstable corneas from RK surgery from years ago. He said we are watching for Keratoconus and that I really need a stronger eye glass prescription. I got a much stronger one a year ago so here we go again. He went through all the notes from the cornea specialist and explained everything in great detail, plus he's a nice guy who didn't mind taking the time to do so. With a new prescription, I can get to 20/30 in my bad eye and now 20/25 in my good eye. A year ago, is when the 20/20 stopped in that eye. Of course, that 20/30 in the left is with something similar to triple or quadruple vision, it may be clearer but with all the overlapping images, it's more like 20/400 to me. I mean, if all I could look through is my left eye, I certainly could not drive or read. Not sure how that can be called 20/30. That's why it's so scary and I consider myself blind in that eye. And now not getting 20/20 in my right eye was a new development that started last April. I see about a new prescription next week. I need to start thinking about the sclera lenses. That's the recommendation for me. I'll have to come out of retirement and start saving, I guess.

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