3 ms·

Keratoconus sufferer here. This looks really cool. I'm probably not going to need a corneal transplant at this point (since my condition appears to have stabili

Keratoconus sufferer here. This looks really cool. I'm probably not going to need a corneal transplant at this point (since my condition appears to have stabilized with age) but I'm definitely going to follow this. Even with correction the acuity in one of my eyes is very bad (like, can't read 16 point font at arm's length bad). Since this method takes the tissue rejection concern out of the equation I wonder if an "elective" corneal transplant might be an option down the road.

robin_reala 6y ago
Honestly, I think CXL then laser surgery is probably a preferable treatment to corneal transplants. You’re looking at 6 month recovery time for that.
- interestica 6y ago
  CXL isn't useful at all since his vision has stabilized. CXL only halts the progression of the disease.
  - EvanAnderson 6y ago
    That's the assumption I've been led to believe by my doctor as well. Doing some searching does show that there's been some discussion of refractive surgery post-CXL, but I can't imagine that putting any more stress on my baggy, distended corneas would be a great idea. >smile< I'm a little bummed I missed the possibility of CXL. I was diagnosed with KC in 2004, at age 27. I saw a couple specialists at the time, one of whom mentioned trials (in the US, where I am) for a procedure to strengthen and stabilize the cornea using UV light and riboflavin. He felt it was too new and unproven to recommend I explore it.
    - robin_reala 6y ago
      I was offered the CXL / laser surgery combo by my opthamologist (UK) 6 or 7 years ago, but decided to do neither. Like you, my diagnosis has stabilised with age (first diagnosed 1994) and I don’t want to potentially disturb it.
- slhck 6y ago
  Post-CXL laser surgery is not always possible. If the cornea's thickness has already degraded too much, lasering would be very risky and lead to tearing.
interestica 6y ago
Also a Keratoconus sufferer. And it also looks like the progression has at least stabilized with age (which makes treatments like CXL kinda useless). What are you using for correction? I ask because my bad eye (which can't get close to correction with glasses) now gets better than 20/20 vision with hybrid lenses. And my good eye can't get the same acuity! It's an interesting sphere of research (so much is still unknown, and there are so many changes in the material science aspects of it). I got by for a long time with "extended-range" toric soft lenses and have very different experiences depending on the material type. (For instance, Frequency 55 XR was made with 'Methafilcon B' 'High Water Ionic' and I had 'unexpectedly good vision' with them.) Oh, contact lens material is a rabbit hole: https://en.wikipedia.org/wiki/List_of_soft_contact_lens_materials https://en.wikipedia.org/wiki/List_of_soft_contact_lens_mate...
- EvanAnderson 6y ago
  I'm really pretty lucky. I can get by only using spectacles. My prescription isn't really too bad. I can get acceptable correction in my good eye and still have passable 3D vision with correction in my bad eye. On that basis I've opted to stay w/ spectacles. (I can get markedly better correction for my bad eye with some more axial tilt. I tend to easily lose convergence with that additional tilt and get massive headaches, however.) I tried soft contact lenses, prior to my keratoconus diagnosis, when I was much younger. The foreign body sensation simply would not go away. It was a massive distraction, to the point that I couldn't really think about much else. Then I start fidgeting with my eyes and end up with swelling and tears. (Hard, balled-up fist eye rubbing from severe childhood allergies is probably the root cause of my keratoconus. The animal allergies are mostly gone now, and the hay fever is only a mild irritation. I can still, however, induce foreign body sensation and massive itchiness just by touching the skin around my eyes. There's probably a bit of obsessive compulsive disorder going on there.)

robin_reala 6y ago

Honestly, I think CXL then laser surgery is probably a preferable treatment to corneal transplants. You’re looking at 6 month recovery time for that.

interestica 6y ago
CXL isn't useful at all since his vision has stabilized. CXL only halts the progression of the disease.
- EvanAnderson 6y ago
  That's the assumption I've been led to believe by my doctor as well. Doing some searching does show that there's been some discussion of refractive surgery post-CXL, but I can't imagine that putting any more stress on my baggy, distended corneas would be a great idea. >smile< I'm a little bummed I missed the possibility of CXL. I was diagnosed with KC in 2004, at age 27. I saw a couple specialists at the time, one of whom mentioned trials (in the US, where I am) for a procedure to strengthen and stabilize the cornea using UV light and riboflavin. He felt it was too new and unproven to recommend I explore it.
  - robin_reala 6y ago
    I was offered the CXL / laser surgery combo by my opthamologist (UK) 6 or 7 years ago, but decided to do neither. Like you, my diagnosis has stabilised with age (first diagnosed 1994) and I don’t want to potentially disturb it.
slhck 6y ago
Post-CXL laser surgery is not always possible. If the cornea's thickness has already degraded too much, lasering would be very risky and lead to tearing.

interestica 6y ago

Also a Keratoconus sufferer. And it also looks like the progression has at least stabilized with age (which makes treatments like CXL kinda useless). What are you using for correction? I ask because my bad eye (which can't get close to correction with glasses) now gets better than 20/20 vision with hybrid lenses. And my good eye can't get the same acuity! It's an interesting sphere of research (so much is still unknown, and there are so many changes in the material science aspects of it). I got by for a long time with "extended-range" toric soft lenses and have very different experiences depending on the material type. (For instance, Frequency 55 XR was made with 'Methafilcon B' 'High Water Ionic' and I had 'unexpectedly good vision' with them.) Oh, contact lens material is a rabbit hole: https://en.wikipedia.org/wiki/List_of_soft_contact_lens_materials https://en.wikipedia.org/wiki/List_of_soft_contact_lens_mate...

EvanAnderson 6y ago
I'm really pretty lucky. I can get by only using spectacles. My prescription isn't really too bad. I can get acceptable correction in my good eye and still have passable 3D vision with correction in my bad eye. On that basis I've opted to stay w/ spectacles. (I can get markedly better correction for my bad eye with some more axial tilt. I tend to easily lose convergence with that additional tilt and get massive headaches, however.) I tried soft contact lenses, prior to my keratoconus diagnosis, when I was much younger. The foreign body sensation simply would not go away. It was a massive distraction, to the point that I couldn't really think about much else. Then I start fidgeting with my eyes and end up with swelling and tears. (Hard, balled-up fist eye rubbing from severe childhood allergies is probably the root cause of my keratoconus. The animal allergies are mostly gone now, and the hay fever is only a mild irritation. I can still, however, induce foreign body sensation and massive itchiness just by touching the skin around my eyes. There's probably a bit of obsessive compulsive disorder going on there.)