Corneal Crosslinking

Hi!

I was diagnosed with keratoconus in my right eye at around 14, and subsequently had a graft at 16. Vision improved for about a year, and then deteriorated over time, to the point where I can now just about count fingers at 2m.

I've gone for bi-annual check-ups since to see if there is anything that can be done, and having recently moved to Durban, visited a new ophthalmologist here in mid February. During the examination, they pointed out that my left eye is also affected, something which I had never really bothered to check, as vision in the eye is very good @ 20/16.

The doctor advised that I need to consider corneal crosslinking in my left eye to prevent further deterioration.

I don't really know much about keratoconus, and to honest, I'm terrified of loosing my sight..

The problem I have is that I don't know how long the left eye has been distorted, as it was never tested (or, not that I remember, at least after the initial diagnoses). So, is it a case of the cornea weakening over time, or might it have stabilised? I'm very reluctant to mess with the one eye I have left!

Can anyone that has had the procedure done comment on longer term effects? I realise that this is a fairly new treatment, but any info would be much appreciated.

Also, any success with getting medical aid to pay? The doctor I saw commented that they don't, and the only info I can find form Discovery is a complaint on Hellopeter regarding the fact that they don't cover the cost of the treatment..

Check out this thread Corneal linking

I am a bit against this to be honest. I have had K for a long time, and its very common it occurs in both eyes. I opted to see if my eyes woudl stabalize (which fortunately they have!) rather than do somethign permanent.

How old are you?
What area are you in?
Cross-linking is covered by medical aid, but you are going to have to fight for it.
I would definitely read that thread i posted, and get second and 3rd opinions. It may seem very serious now, and it is, and i have had that fear abotu the disease progressing and going blind...its horrible, but there are options. ICL's/IOL's are a possibility, corneal grafts are becoming more common place and have a decent success rate.
Contact lens tech has improved so much, that I am able to wear them for 8 hours before experiencing corneal swelling and discomfort.

All i am saying is check out ur options, permanent things like CL are just that, permanent. Not enough is known about the disease in my opinion for something like this to be warranted

I did read that thread, thought I'd start a new one for 'my own' discussion

In 28 and live in Durban. I had a graft on my right eye 12 years ago, but there was a complication with the stitches and vision is now, as I said, back to counting fingers. I beleive there is the option to import a cornea from the US? Any info available on this?

Also, what is ICL/IOL?

I wore a hard lense before my previous op, and if I never have to put something in my eye again, it will be too soon!

Your last paragraph is really the crux of my dilemma at the moment. I have one eye that has brilliant vision, and it has keratoconus.. Has/will it stabilise? If not, the risk is loss of vision, at least temporarily, until I get a graft, or do the crosslinking now for peace of mind..

Not sure about the TOS on this forum, are we allowed to swear? Because I'm a nervous *****ing wreck about this..

Not sure if it's important, but the doctors I've seen are Rudi Claasen in Durbanville originally, and Bill Nortje at Westville recently.

Google toric ICL's. Its another option, and opthamologists are getting damn good at doing them.
The hard lenses are hell, absolute hell. For any kind of decent vision, you need to get the custom semi hard lenses. You wont believe how much better they are.
My vision is very good with them (to the point where i play a decent high level of squash).

You are always risking loss of vision. Thats life. Thing is, corneal grafts are much, much better than they were even 5 years ago. K isnt as cut and dry as CL or grafts.
I have lived between these two for a good long while. I would say get a 2nd opinion first of all.
Get the custom lenses made, and see what your quality of life is like. Go for regular checkups and monitor how your eye is changing.

Thats my opinion, and i am basing it on the fact that it worked for me. It seemed the kind of option that bought me time, and bought others time to find better solutions.
Anythign permanent is scary, and i try avoid that as much as possible

The only option for my right eye now is another graft. I'll do that in time, but put it off as technology gets better, and the eye isn't getting any worse.

Semi hard lenses? I wore custom hard lenses before my op, and frankly hated them. I'm not sure I understand how a soft lens can force the keratoconus back??

Like I said, the hard lenses are a nightmare, they gave me perfect vision because they reshaped the eye, but it was hell to wear.

The semi-hard (ish) lenses dont reshape the eye as much, and rather are designed to fit better to your shape and therefore give you better vision.
They do do some reshaping though, if i wear them for a long time its definitely noticeable.

I am not sure if I have understood you correctly though about the lenses and forcing K back. All the hard lenses do, is reshape the eye. Which is why its so damn uncomfortable.
You also have the option of piggy backing, IE, a soft lense, which then has a hard lens on top. I have never tried it, but its another option?

Who did your first graft? Who have you consulted with regards to another?
Are you sure its your only option?

As I understood (and it was ages ago and I may be wrong) the hard lens was basically 'pushed' the K back, resulting in a normal curvature of my cornea?

I've been to Rudi Claasen in Durbaville, who did my graft in 1998, and had many follow ups with him, Dr Kuschke in Ladysmith for a few check ups, and recently Bill Nortje at Westville Eye clinic, who recommended the Cross Linking.

Dr Nortje explained the various treatments available for Keratoconus, but pointed out that the condition of my cornea, and the amount of correction needed, is not suitable for those treatments.

Has anyone had a cornea imported?

Hi all,

we now have a real guru for Cross-linking in Cape Town. Dr Michael Attenborough is in Claremont and has just recently (Dec, 2012) returned from the World Congress for Corneal Cross-linking in Geneva. Great guy and very knowledgeable.

PVI said:

Hi all,

we now have a real guru for Cross-linking in Cape Town. Dr Michael Attenborough is in Claremont and has just recently (Dec, 2012) returned from the World Congress for Corneal Cross-linking in Geneva. Great guy and very knowledgeable.

Click to expand...

Sounds like a shameless punt.

Anyways, as in the other cross-linking thread, i actually got mine done with Epi-on.
just on 6 months ago, no visual improvement, but and only minor increase in astigmatism.
Final checkup in a few weeks!

syntax said:

Sounds like a shameless punt.

Anyways, as in the other cross-linking thread, i actually got mine done with Epi-on.
just on 6 months ago, no visual improvement, but and only minor increase in astigmatism.
Final checkup in a few weeks!

Click to expand...

Sorry to bump this, Im looking to get it done, how are you doing now syntax?
Any improvement?

syntax said:

Sounds like a shameless punt.

Click to expand...

Hey all,

This may be a shameless punt but apparently it's true!

I got a bacterial disease in my right eye due to contact lens wear. I lost almost all my vision within 6 months and am waiting for the infection to clear up so we can proceed with a cornea graft. At present I cannot expose my eye to the light. This has pushed me to my limits and back again, I empathise strongly with all of you with eye problems, it really can be so unbearable at times.

My ophthalmologist also recommended Dr Attenborough for crosslinking and grafting. He stated he was a real expert when it comes to grafting and crosslinking. The reason I'm pointing this out is because, if he is the best, I don't want people to get put off.