keratoconus and Cross linking

[>Reaper<]

Hi

I recently went to get my eyes tested. They were having trouble testing my left eye so I was referred to a specialist.
The specialist did a pentacam test and said they will do another one in the next six months to see how its progressing.

and If its getting worse then they can treat it using cross linking.

Does anyone know if any medical aid would cover this? I am currently on classic saver with discovery.

 

[theratman]

As far as I'm aware it will come out of the savings, perhaps give them a call and ask?

 

[>Reaper<]

As far as I'm aware it will come out of the savings, perhaps give them a call and ask?

Cool will do. thanks man

 

[syntax]

I had this done a few years ago, it wasnt covered.
What is your age if you dont mind me asking?
If you have keratoconus and are under 35, i would strongly recommend getting cross-linking ASAP.
Its a PoS disease that can progress pretty quickly without warning.

I can recommend some keracoconus specialists for the cross-linking and contact lens fitment if you would like

 

[AvatarS]

Best to check with the medical aid directly. They weren't covering it when I had it done, but were investigating covering it.
Can also recommend opthalmologist to do it if you need.

I can recommend some keracoconus specialists for the cross-linking and contact lens fitment if you would like

I would like a recommendation for someone good with contact lenses. Was really unhappy with the last person I went to, and the lenses I ended up with.

 

[>Reaper<]

I had this done a few years ago, it wasnt covered.
What is your age if you dont mind me asking?
If you have keratoconus and are under 35, i would strongly recommend getting cross-linking ASAP.
Its a PoS disease that can progress pretty quickly without warning.

I can recommend some keracoconus specialists for the cross-linking and contact lens fitment if you would like

I am 25. I did go and see a specialist, she seemed pretty nice. She said that they are going to do another pentacam test in 6 months to see if its actually progressing because it sometimes can stabilize.

So in 6 months, if they determine that its progressing then only will they send me to get the cross linking done.

 

[syntax]

I would like a recommendation for someone good with contact lenses. Was really unhappy with the last person I went to, and the lenses I ended up with.

Which area do you stay in and who was your last optometrist? Which lenses do you prefer and are you a contact lens wearer daily or just sometimes?
Hybrid lenses require daily use, pretty much without exception, there are other lenses which you can wear on and off again, vision is ok but not as sharp. Piggy backing is also an option, but i found it very awkward

 

[syntax]

I am 25. I did go and see a specialist, she seemed pretty nice. She said that they are going to do another pentacam test in 6 months to see if its actually progressing because it sometimes can stabilize.

So in 6 months, if they determine that its progressing then only will they send me to get the cross linking done.

That approach seems odd, unless they arent sure of the diagnosis. The nature of the beast is that it will sit doing nothing for ages and then progress pretty quickly for a period of time

 

[>Reaper<]

That approach seems odd, unless they arent sure of the diagnosis. The nature of the beast is that it will sit doing nothing for ages and then progress pretty quickly for a period of time

I didn't realize this. I'm just going on that they told me. What would you recommend I do?

 

[syntax]

I didn't realize this. I'm just going on that they told me. What would you recommend I do?

I would always get a second opinion. I think it is likely they noticed the cornea thickness was under the normal values, but arent sure if this is just how yours are or if it is the disease. It sounds like its quite early on, which means they want to scan again and see the changes.
There should be distinctive buldging and thinning in area's.

However, a second opinion would probably put your mind at ease and even offer other options. The cross-linking works pretty damn well at stopping the thinning, although it doesnt often improve vision. The earlier you can do it, the more you limit the damage that can be done.

 

[>Reaper<]

I would always get a second opinion. I think it is likely they noticed the cornea thickness was under the normal values, but arent sure if this is just how yours are or if it is the disease. It sounds like its quite early on, which means they want to scan again and see the changes.
There should be distinctive buldging and thinning in area's.

However, a second opinion would probably put your mind at ease and even offer other options. The cross-linking works pretty damn well at stopping the thinning, although it doesnt often improve vision. The earlier you can do it, the more you limit the damage that can be done.

Thanks for all the advice!

 

[DanH]

I would get a second opinion from a corneal specialist. I can recommend one if you are in CT. I have kerataconus in both eyes and was diagnosed at around 24 by a specialist whom in retrospect wasn't so clued up.

It didn't progress at all back then and I had no surgery at the time, but at 29 the vision in my right eye deteriorated very badly in a matter of months and I was forced to seek out a new specialist.

I had advanced epp-off cross linking on the left eye and the vision actually improved in that eye over a period of a year. I can read 2 more lines on the eye chart with the left eye than before the cross linking.

It was too late for the right eye as the cornea had thinned beyond saving. I have since had on the right eye, a corneal transplant, a lens replacement, lazer surgery, 1000s of eyedrops, about 10 to 15 scans and now wear a hard contact lens.

20months back the cross linking was R8000/eye and medical aids didn't pay for it.

Corneal transplant = R80k (imported donnar tissue was R22k of which medical aid would only cover R12k, they covered the rest)
Lens Replacement = R35k (medical aid covers in full)
Lazer PRK = R22k for both eyes (some medical aids cover it)

So get it checked out by a corneal specialist asap and if cross linking is an option, go for it. You don't want to go down the corneal transplant road unnecessarily.

 

[>Reaper<]

I would get a second opinion from a corneal specialist. I can recommend one if you are in CT. I have kerataconus in both eyes and was diagnosed at around 24 by a specialist whom in retrospect wasn't so clued up.

It didn't progress at all back then and I had no surgery at the time, but at 29 the vision in my right eye deteriorated very badly in a matter of months and I was forced to seek out a new specialist.

I had advanced epp-off cross linking on the left eye and the vision actually improved in that eye over a period of a year. I can read 2 more lines on the eye chart with the left eye than before the cross linking.

It was too late for the right eye as the cornea had thinned beyond saving. I have since had on the right eye, a corneal transplant, a lens replacement, lazer surgery, 1000s of eyedrops, about 10 to 15 scans and now wear a hard contact lens.

20months back the cross linking was R8000/eye and medical aids didn't pay for it.

Corneal transplant = R80k (imported donnar tissue was R22k of which medical aid would only cover R12k, they covered the rest)
Lens Replacement = R35k (medical aid covers in full)
Lazer PRK = R22k for both eyes (some medical aids cover it)

So get it checked out by a corneal specialist asap and if cross linking is an option, go for it. You don't want to go down the corneal transplant road unnecessarily.

Thanks for the advice!

Much Appreciated!

 

[syntax]

I would get a second opinion from a corneal specialist. I can recommend one if you are in CT. I have kerataconus in both eyes and was diagnosed at around 24 by a specialist whom in retrospect wasn't so clued up.

It didn't progress at all back then and I had no surgery at the time, but at 29 the vision in my right eye deteriorated very badly in a matter of months and I was forced to seek out a new specialist.

I had advanced epp-off cross linking on the left eye and the vision actually improved in that eye over a period of a year. I can read 2 more lines on the eye chart with the left eye than before the cross linking.

It was too late for the right eye as the cornea had thinned beyond saving. I have since had on the right eye, a corneal transplant, a lens replacement, lazer surgery, 1000s of eyedrops, about 10 to 15 scans and now wear a hard contact lens.

20months back the cross linking was R8000/eye and medical aids didn't pay for it.

Corneal transplant = R80k (imported donnar tissue was R22k of which medical aid would only cover R12k, they covered the rest)
Lens Replacement = R35k (medical aid covers in full)
Lazer PRK = R22k for both eyes (some medical aids cover it)

So get it checked out by a corneal specialist asap and if cross linking is an option, go for it. You don't want to go down the corneal transplant road unnecessarily.

any reason you went with epi-off?
I did the epi-on as it was less intrusive, ive read enough on both and there are a lot of conflicting opinions and reports. My right eye has been very stable, my left actually got a little worse after the procedure, but has stabilized since then

 

[DanH]

any reason you went with epi-off?
I did the epi-on as it was less intrusive, ive read enough on both and there are a lot of conflicting opinions and reports. My right eye has been very stable, my left actually got a little worse after the procedure, but has stabilized since then

I did a load of reading too and was also wanting to go the epi-on route, but the corneal specialist I went to said epi-off would give better results on my cornea. The man specialises and lectures in corneal surgery and has done 1000s of the procedures, so I had to take his advice.

The procedure is painless. The pain comes in an hour or 2 later and you really have to have some strong pain meds, not over the counter stuff. I was provided with a script for pain meds and sleeping tablets. Then its managable. I didnt take the sleeping tablets though. I had the procedure on a Wednesday morning. By Friday morning the pain was gone and there was just iratibility. On Monday I was fine to work again and by Wednesday the eye felt completely back to normal.

I wasn't expecting an improvement at all from the cross linking, just prevention of further deterioration. The scans show the peak is not as steep and the flat part not as flat as it was pre-op. The changes are very slight though and only became apparent many months later.