Keratoconus and treatments

Rocket-Boy

Rocket-Boy

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There is a big audience here so I just wanted to know if anyone has or knows someone with Keratoconus.
http://en.wikipedia.org/wiki/Keratoconus
For those who don't know its an eye condition that causes bulging of hte eyes and changes them from being round to being more rugby ball shaped.

I have it and its not progressing too fast thankfully. I have been recommended to go for UV crosslinking and I was wondering if anyone has had that done, its supposed to stop it but it is a very expensive treatment that medial aid doesn't cover. I don't have too much hassle seeing(seeing well is a different story) but I want to go for hard contacts and was told to get this done first.
 
Rocket-Boy said:
There is a big audience here so I just wanted to know if anyone has or knows someone with Keratoconus.
http://en.wikipedia.org/wiki/Keratoconus
For those who don't know its an eye condition that causes bulging of hte eyes and changes them from being round to being more rugby ball shaped.

I have it and its not progressing too fast thankfully. I have been recommended to go for UV crosslinking and I was wondering if anyone has had that done, its supposed to stop it but it is a very expensive treatment that medial aid doesn't cover. I don't have too much hassle seeing(seeing well is a different story) but I want to go for hard contacts and was told to get this done first.
Click to expand...

I've had the cross-linking. Posted about it a while back, I'll see if I can find it...
 
Rocket-Boy said:
Ahh awesome, really interested to know how bad the procedure was and if its worth it.
Click to expand...

[layman's terms + sketchy memory]

They roughen up your eyeball with a scraper- think of it like lightly sandpapering wood before varnishing or something. When eye is 'nice and rough' :erm: they do the UV light with some collagen (sp?) drops for an hour or something.

They bake the eyeball with the UV light, which sets the collagen fibres to strengthen the cornea to stop further weakening and bulging.

After the eye settled, I returned for contact testing and fitting.

I only really use the contact at work. Staring at the screen all day tires the eyes...
 
Budza said:
http://mybroadband.co.za/vb/showthread.php/316927-Corneal-Crosslinking

http://mybroadband.co.za/vb/showthread.php/312125-Corneal-Cross-linking

Can't find my post tho.

For me, it has made the eye more stable, and I can now wear a hard contact on it, which evens things out so I don't have to overcompensate all the time with the good eye.

Worth it, I reckon. It's expensive, so depends how much you need your eyesight or how bad it really is...
Click to expand...

The thing is that mine isnt so bad, its also progressing very slowly. Its common to have good and bad days with the condition and lately its been more bad than good.
I work at a pc all day and im battling to see properly at the moment so that isnt very good.
Im 33 and I heard the process happens naturally as you get closer to 40 but I think I need to get it done rather than waiting to see what happens.
They have quoted me R14k for the operation, can you recall if yours was similar?
 
Budza said:
http://mybroadband.co.za/vb/showthread.php/316927-Corneal-Crosslinking

http://mybroadband.co.za/vb/showthread.php/312125-Corneal-Cross-linking

Can't find my post tho.

For me, it has made the eye more stable, and I can now wear a hard contact on it, which evens things out so I don't have to overcompensate all the time with the good eye.

Worth it, I reckon. It's expensive, so depends how much you need your eyesight or how bad it really is...
Click to expand...

I didnt think it was that expensive. You can also now do Epi -on, so the recovery is much faster and relatively pain free

Rocket-Boy said:
The thing is that mine isnt so bad, its also progressing very slowly. Its common to have good and bad days with the condition and lately its been more bad than good.
I work at a pc all day and im battling to see properly at the moment so that isnt very good.
Im 33 and I heard the process happens naturally as you get closer to 40 but I think I need to get it done rather than waiting to see what happens.
They have quoted me R14k for the operation, can you recall if yours was similar?
Click to expand...

Get cross-linking done now. The epi-on procedure is quick, relatively cheap and results are quite good. Rather stop it now before it gets worse. The disease can progress quickly and quite suddenly.

You are almost near 40, where the cornea hardens naturally, so i guess you could gamble, but why?

As for cost, i think mine was about 15k for both eyes done at the same time.

Getting a decent scan done will show you how thin your cornea is, and what the right treatment is.
You can double up on procedures to try get better vision if you are suitable. Alternatively, there are tons of methods to help you get better vision than you likely have now. These range from IOL's to ICL's and CXL (eip on and off) etc.

Consult a specialist in the field and get all the options.

If you need better vision and dont want a procedure, there are some amazing advances in contact lenses, where there is certainly a type that will suite you, feel comfortable and give you better vision than glasses
 
syntax said:
I didnt think it was that expensive. You can also now do Epi -on, so the recovery is much faster and relatively pain free



Get cross-linking done now. The epi-on procedure is quick, relatively cheap and results are quite good. Rather stop it now before it gets worse. The disease can progress quickly and quite suddenly.

You are almost near 40, where the cornea hardens naturally, so i guess you could gamble, but why?

As for cost, i think mine was about 15k for both eyes done at the same time.

Getting a decent scan done will show you how thin your cornea is, and what the right treatment is.
You can double up on procedures to try get better vision if you are suitable. Alternatively, there are tons of methods to help you get better vision than you likely have now. These range from IOL's to ICL's and CXL (eip on and off) etc.

Consult a specialist in the field and get all the options.

If you need better vision and dont want a procedure, there are some amazing advances in contact lenses, where there is certainly a type that will suite you, feel comfortable and give you better vision than glasses
Click to expand...

Thanks Syntax, was hoping you would see this after reading your other comments in the previous threads.
My Ophthalmologist recommended this to me, I wasnt sure if it was because I really needed it or because they just recently bought the hardware to do it themselves!
I was there a few days ago to get another mapping done to check progression and they said it has to be done before I stop being a candidate for it. I want to try some of the hybrid lenses because I dont think I could handle gas permeable. Im battling with light sensitivity and would like to be able to wear sunglasses again.
 
Rocket-Boy said:
Thanks Syntax, was hoping you would see this after reading your other comments in the previous threads.
My Ophthalmologist recommended this to me, I wasnt sure if it was because I really needed it or because they just recently bought the hardware to do it themselves!
I was there a few days ago to get another mapping done to check progression and they said it has to be done before I stop being a candidate for it. I want to try some of the hybrid lenses because I dont think I could handle gas permeable. Im battling with light sensitivity and would like to be able to wear sunglasses again.
Click to expand...

It would be extremely difficult not to be a candidate for CXL. It sounds like they are trying to rush you into it to be honest.
The only decision in my mind, is whether to do the Epi-on or Epi-off. But still, take some time with it and feel comfortable

Epi-off has been around longer, is tried and tested. It has a slightly higher risk associated with it, but its nothing insane. And almost worse case scenario is losing a line of vision on the chart. However, recovery is slow and not that pleasant. Benefits are usually some kind of vision improvement and better contact lens fitting.

How thin is your cornea? How bad is your astigmatism?

The gas permeable lenses are great. I have used hybrid lenses for 8 years or so, and it has changed my life. I can play sport properly and see well with them for around 8 - 10 hours before i start getting corneal swelling and "haze" .

Do you have light sensitivity all the time? Do you notice at nights or when its dark that one eye see's "darker" than the other?

Personally, i would get a second opinion. I recommended an opthamologist in JHB to another member, who was very happy with the results. I went to the same guy, he is very open, very honest and answers all your questions.

It cant hurt to get the second opinion, especially with your eyes.

My opinion, i would get CXL, and likely the Epi-on. Its kinda a sad procedure, because you hope that things will be better afterwards, but it purely is a preventative thing. Considering how fast the disease can progress, even after years of stability, i would consider getting it done.

After that, get a proper hybrid lens fitting and see if you are happy with it. There are many options, some you have to wear everyday for them to be comfortable, others, are more relaxed with the usage. It can take some time, but is worth it.

If you want to consider lens free options, you can look at the starr ICL's. Its a completely reversible procedure, however, it isnt cheap (about 60k for both eyes)
 
Last edited:
syntax said:
It would be extremely difficult not to be a candidate for CXL. It sounds like they are trying to rush you into it to be honest.
The only decision in my mind, is whether to do the Epi-on or Epi-off. But still, take some time with it and feel comfortable

Epi-off has been around longer, is tried and tested. It has a slightly higher risk associated with it, but its nothing insane. And almost worse case scenario is losing a line of vision on the chart. However, recovery is slow and not that pleasant. Benefits are usually some kind of vision improvement and better contact lens fitting.

How thin is your cornea? How bad is your astigmatism?

The gas permeable lenses are great. I have used hybrid lenses for 8 years or so, and it has changed my life. I can play sport properly and see well with them for around 8 - 10 hours before i start getting corneal swelling and "haze" .

Do you have light sensitivity all the time? Do you notice at nights or when its dark that one eye see's "darker" than the other?

Personally, i would get a second opinion. I recommended an opthamologist in JHB to another member, who was very happy with the results. I went to the same guy, he is very open, very honest and answers all your questions.

It cant hurt to get the second opinion, especially with your eyes.

My opinion, i would get CXL, and likely the Epi-on. Its kinda a sad procedure, because you hope that things will be better afterwards, but it purely is a preventative thing. Considering how fast the disease can progress, even after years of stability, i would consider getting it done.

After that, get a proper hybrid lens fitting and see if you are happy with it. There are many options, some you have to wear everyday for them to be comfortable, others, are more relaxed with the usage. It can take some time, but is worth it.

If you want to consider lens free options, you can look at the starr ICL's. Its a completely reversible procedure, however, it isnt cheap (about 60k for both eyes)
Click to expand...

Again, thanks for taking the time to give advice, I really appreciate it.
I thought I was fine for a long time, I have been wearing glasses up to now with decent vision but recently it started to deteriorate again. I have been really down about this lately because it is so hard to see and working with pc's when you cant read your code properly is no fun.

My cornea is quite thin from what I understand, so I was recommended to get it done as soon as possible.

The light sensitivity was never a problem before but recently my eyes are very red after a day or working in front of my pc. I do a lot of outdoor sports and that is probably contributing to it being summer.

I do see slightly darker in one eye than the other at night, but one eye is worse than the other so I attributed it to that. I dont have excessive "starring" at night but its not exactly normal either.

I have to go back to the Ophthalmologist in 4 weeks time to get an eye infection checked out so Im going to chat to them about all of the ins and outs with it. I will try to schedule a checkup when im up in JHB area again(which shouldnt be too long)

With regards to the actual procedure they proposed Im sure it would be EPI-on. I dont think they have the facilities to do EPI-off in their rooms and decribed it as a relatively non-invasive procedure.

Right now im worried again about progression where I havn't been for a while and the peace of mind would be worth the money on its own!!
 
Budza said:
[layman's terms + sketchy memory]

They roughen up your eyeball with a scraper- think of it like lightly sandpapering wood before varnishing or something. When eye is 'nice and rough' :erm: they do the UV light with some collagen (sp?) drops for an hour or something.

They bake the eyeball with the UV light, which sets the collagen fibres to strengthen the cornea to stop further weakening and bulging.

After the eye settled, I returned for contact testing and fitting.

I only really use the contact at work. Staring at the screen all day tires the eyes...
Click to expand...

Urk! the thought of the roughening is not so great but at this point I would do whatever is needed to be able to see properly again.
 
Im going to answer your questions in the other threads here.

Its been less than a year since the procedure. I had minor vision deterioration in one eye, my other actually improved a tiny bit.
Both are not noticeable to any kind of degree though.
Astigmatism went up in my bad eye by a small bit as well, again, nothing too serious. Its quite rare for it to have a negative effect, so i guess I make up that unlucky 1%.

In terms of recovery, I was functional about 2 days afterwards. You cannot wear any lenses for a few weeks, and need to take a series of eye drops, but other than that its no real hassle.

The procedure isnt bad, but its quite boring, and your eyes do get tired of being open for the entire period. The biggest killer is the boredom, time seems to drag during the procedure, and the need to blink is massive.

I have only just re-done my contact lens fitting, and will be fetching them on saturday, so will have an idea on how that is after then.
 
Thanks for the feedback, Im still a little nervous about going for something so permanent but I think its the right thing to do.
Can I ask one last favour please? would you mind telling me the brand of the contacts you use? Im not sure what the guys in EL know so that kind of information will help me to steer them in a direction if they dont already use them.
 
Rocket-Boy said:
Thanks for the feedback, Im still a little nervous about going for something so permanent but I think its the right thing to do.
Can I ask one last favour please? would you mind telling me the brand of the contacts you use? Im not sure what the guys in EL know so that kind of information will help me to steer them in a direction if they dont already use them.
Click to expand...

read a bit more about the process. I was extremely worried about the epi-off process, because it was a bit more invasive. i was also not the best candidate for it. Epi on is quite a simple process.
And you actually want the process to be permanent :)

im embarrassed to say i dont know the brand. I only get new ones every few years or so, so its not that familiar to me. I do know they are imported from the UK. I will find out the brand name this weekend once I collect my new ones and let you know
 
syntax said:
read a bit more about the process. I was extremely worried about the epi-off process, because it was a bit more invasive. i was also not the best candidate for it. Epi on is quite a simple process.
And you actually want the process to be permanent :)

im embarrassed to say i dont know the brand. I only get new ones every few years or so, so its not that familiar to me. I do know they are imported from the UK. I will find out the brand name this weekend once I collect my new ones and let you know
Click to expand...

Thanks that would be awesome, you make sense which is why Im really glad you and Budza commented.
Im interested in those contacts you use, I dont like the idea of having to get new ones every few months so those sound so much better!
 
Sorry to bump an old thread but im going in for my right eye on Monday. Getting the Epi off done as they say it has a higher success rate. Bit nervous but it needs to be done. Will get the left one done in a month or two once I have one good functioning eye again.
 
I had them both done in one go. Epi-on, as my corneas are quite thin and it was a bit more risky to do epi-off.
Found an opthalmologist in Joburg I was very happy with. Another mybb member has since been to him.

Can't comment on results for epi-off, but for mine (and I have posted about the procedure somewhere else):
I had a lot of light sensitivity for a long time. It's going away now, about a year later. I met someone else who had it done, and he said he was sensitive to light for about 2 years.
Vision has improved a bit, which they were surprised about. Haven't gotten new lenses yet, as he said it would take about a year to stabilise. Will look to get new lenses now when I'm next in Jhb.
Keep eye drops around; they did get dry for a while after.

And for the procedure itself - take along your ipod/similar to listen to some music/audio books while it's being done. It is boring lying there with nothing to do.
 
AvatarS said:
I had them both done in one go. Epi-on, as my corneas are quite thin and it was a bit more risky to do epi-off.
Found an opthalmologist in Joburg I was very happy with. Another mybb member has since been to him.

Can't comment on results for epi-off, but for mine (and I have posted about the procedure somewhere else):
I had a lot of light sensitivity for a long time. It's going away now, about a year later. I met someone else who had it done, and he said he was sensitive to light for about 2 years.
Vision has improved a bit, which they were surprised about. Haven't gotten new lenses yet, as he said it would take about a year to stabilise. Will look to get new lenses now when I'm next in Jhb.
Keep eye drops around; they did get dry for a while after.

And for the procedure itself - take along your ipod/similar to listen to some music/audio books while it's being done. It is boring lying there with nothing to do.
Click to expand...

Its not so much the boring that im worrying about but more someone hacking bits of my eye off!
I was having light sensitivity before and wanted to get contacts so I could wear sunglasses but they said to get this done first.
My left eye was always bad but now my right is suddenly in a race to overtake it so they are doing that one first.
 
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