Corneal Cross-linking

i found out from my ophthalmologists that i need this procedure done to my left eye. Has anyone on here ever had it done before? If so did it help? Were there ay complications? etc

Really keen to get as much info from ppl who've done it before i decide whether or not to go ahead with it.

Thanks in advance

I am too far along for CL, but not far along enough for grafts.
TBH, I would be a bit wary of this, its still very new without a broad base of "test" people having this done, and the long term results or damage seen.

When were you diagnosed? How bad is it? How much has it progressed? What is your age?

When I was diagnosed, it didnt look good, I thought I would need grafts within a few years.
However, mine has stabalized over the last 3 years of so, and I am now a candidate for IOL's/ ICL's.

Completely reversable procedure, which is why I like it so much.
Which opthamologist are you going to? What area are you in?
I would definitely get a second opinion on this

I second the need for a second opinion.

I was also initially told I'd need it. But medical aid doesn't cover it at all, and further reading showed it to be still experimental with no idea of the long-term effects. My second opinion cautioned waiting a year and seeing whether it is stabilised or deteriorating before doing a procedure that may prove unnecessary.
Also, it doesn't do much to improve your vision, which just makes it seem almost pointless to me.

I was diagnosed in 2007, but beacuse its onlyin my left eye, n my right eye just has simple myopia i can still wear glasses (strengthening vision in my right eye only).

I tried the hard contact lenses for a couple of weeks but they were too unbearable.

As for the progression, my left eye has gotten so bad that duriing my eye exam i couldnt read the biggest "E" on the chart, even with the different types of lens strengths.

Any kind of invasive surgery frightens me, and with the shortage of corneas in SA i can't imagine opting for a transplant knowing there'd be a risk of rejection... Thats why CXL seems like the best option. Neither of my ophthalmologists at this point have suggested any kind of management options besides the ones I've listed above. So i dont know if I'm a candidate for Intacs, IOLs or anythin else really.

Think ur right about the second opinion. I had my first appointment yesterday with an opth here in Jhb (Dr Barry Payne, he is really nice), he's referred me to Dr Mark Deist to go get my scans done. Then its back to Dr Payne to discuss the scan results.

Can you recommend any other good opths in the Jhb area? I'm still a bit taken aback by all this and really wanna see the best doc possible.

Nkalipho_M said:

I was diagnosed in 2007, but beacuse its onlyin my left eye, n my right eye just has simple myopia i can still wear glasses (strengthening vision in my right eye only).

I tried the hard contact lenses for a couple of weeks but they were too unbearable.

As for the progression, my left eye has gotten so bad that duriing my eye exam i couldnt read the biggest "E" on the chart, even with the different types of lens strengths.

Any kind of invasive surgery frightens me, and with the shortage of corneas in SA i can't imagine opting for a transplant knowing there'd be a risk of rejection... Thats why CXL seems like the best option. Neither of my ophthalmologists at this point have suggested any kind of management options besides the ones I've listed above. So i dont know if I'm a candidate for Intacs, IOLs or anythin else really.

Think ur right about the second opinion. I had my first appointment yesterday with an opth here in Jhb (Dr Barry Payne, he is really nice), he's referred me to Dr Mark Deist to go get my scans done. Then its back to Dr Payne to discuss the scan results.

Can you recommend any other good opths in the Jhb area? I'm still a bit taken aback by all this and really wanna see the best doc possible.

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Firstly, Mark Deist is the man! Awesome guy who will give you the best advice
Secondly, here is the crap news, you are almost guaranteed to develop it in your other eye.
I thought I was home free, my left eye is absolutely shocking, my right eye was ok....Mark picked up the big K a few years ago in my right eye

Since you are in jozi, in hyde park and sandton city is an optometrist called Alan kaye who specializes in K. The lenses are expensive, but last 4 years + and are unbelievably comfortable. they are made specifically for you, and I cannot tell you the difference it has made to my life and my vision!

Go see mark, and check out alan as well for options on the contacts.

good luck man!

Which lenses are u talking about? The IOLs? I don't think those r for me, like I said, I'm anti anything invasive.
I hope my right eye doesn't get affected! I'm studying medicine, if I want a proper shot at specializing I need my eyesight.

*shrugs* oh well

Thanks

Nkalipho_M said:

Which lenses are u talking about? The IOLs? I don't think those r for me, like I said, I'm anti anything invasive.
I hope my right eye doesn't get affected! I'm studying medicine, if I want a proper shot at specializing I need my eyesight.

*shrugs* oh well

Thanks

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No, I am talking contact lenses in my last post. They are semi-hard lenses which have the vision clarity of hard lenses but the comfort of soft. They are also designed specifically for your eyes, which is why they are so comfortable.
Alan kaye is the man who organises that stuff!

Hard lenses are not that bad, if it comes to it. Takes some getting used to, but then it's not so bad.

I had CCL done about 4-5 years ago just as I noticed my Kerataconus was getting worse, I won't sugar coat it, it was not pleasant and the recovery was very painful for a week but it was worth it as it definitely stabilised and even improved my vision slightly in one eye. When I was first diagnosed I was told, " Sorry, at some point you'll go blind" so I'm just glad something has been developed to treat it.

About 18 months after the CCL I had IOLs implanted and have been very pleased with the results. I must say tho' by all accounts my result was very lucky and most people have not had as good results. Only side effect from the IOLs was from the "ventialtion" holes they laser into your iris for the fluid to circulate caused me to be quite sensitive to glare, especially from lower down in my field of vision. This has improved over the years tho and is only noticeable in very bright conditions. Probably more a case of getting used to it rather than improving...

My advise would be do the CCL otherwise you're just going to get worse, for IOL's do a lot of research, and make your decision well aware of the risks. It may be reversable but that doesn't mean your vision will revert to what it was before, it may be worse and the risks of surgery are doubled. As I said, I was lucky, some people have the IOL and still need glasses or normal contact lenses to completely correct their vision which seems to be quite a fail to me....

shortestpath said:

I had CCL done about 4-5 years ago just as I noticed my Kerataconus was getting worse, I won't sugar coat it, it was not pleasant and the recovery was very painful for a week but it was worth it as it definitely stabilised and even improved my vision slightly in one eye. When I was first diagnosed I was told, " Sorry, at some point you'll go blind" so I'm just glad something has been developed to treat it.

About 18 months after the CCL I had IOLs implanted and have been very pleased with the results. I must say tho' by all accounts my result was very lucky and most people have not had as good results. Only side effect from the IOLs was from the "ventialtion" holes they laser into your iris for the fluid to circulate caused me to be quite sensitive to glare, especially from lower down in my field of vision. This has improved over the years tho and is only noticeable in very bright conditions. Probably more a case of getting used to it rather than improving...

My advise would be do the CCL otherwise you're just going to get worse, for IOL's do a lot of research, and make your decision well aware of the risks. It may be reversable but that doesn't mean your vision will revert to what it was before, it may be worse and the risks of surgery are doubled. As I said, I was lucky, some people have the IOL and still need glasses or normal contact lenses to completely correct their vision which seems to be quite a fail to me....

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I did not have it done, and my K has not gotten worse in years. Thats the thing with the disease, you never really know. Again, I would be hesitant to do any procedure thats that invasive.

tau1z said:

I did not have it done, and my K has not gotten worse in years. Thats the thing with the disease, you never really know. Again, I would be hesitant to do any procedure thats that invasive.

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Sorry, phrased that badly, what I mean is that if your K is actively deteriorating you can't count on it stabilising. Mine was stable for 5+ years after my initial diagnoses, then it started getting worse which is when I decided to do the CCL to prevent it getting any worse. Anyway, just my 2c worth, it worked fo me and I recommend it. Got to make your own decision at the end of the day...

Thread resurrection!

So, with the epi on Cross linking becoming more and more standard, I bit the bullet and got it done (thanks to another forum member who was braver than I was and did it first )!

The epi on procedure is non - invasive (technically..) and recovery is much quicker than epi off.
I had the procedure done last week wednesday and vision was pretty much back to normal on Friday.

I still have some light sensitivity (6 days later) and my eyes are a bit scratchy, other than that, everything seems 100%.
My vision in my left eye seems a little down since the procedure, but nothing huge, and i have been told it should come right in the near future.

The procedure is more uncomfortable than painful (you end up lying pretty still for an hour staring at a light with your eyes open) and at the moment I dont have any real bad side effects. I get my checkup in a month again and will have better feedback then!

You're welcome

It's been 2 months since I had it done. Same ophthalmologist as tau1z, if I'm not mistaken.

tau1z is spot on about the procedure - it's not painful, just weird and uncomfortable lying still and staring for a long time. I do suggest you take an ipod with music/audio book along if you're getting it done to distract you (insist when the admission nurses say it's not allowed, or smuggle it in - wish I had).

A week after the procedure, the vision in my left was a bit better, and the vision in my right was a bit worse. I was told it would probably take around 6 weeks to stabilise, so not to worry about it too much. Seems back to normal now. The measurements did indicate that both were a bit thicker, but I was told it was too soon to rely on that.

The scratchiness went away quickly for me. The worst was the day of the procedure, but there was no irritation once the bandage lens was removed. Was wearing contact lenses 8 days after the procedure.

My next checkup is in August (to fit in with my next trip up North). Should be able to better comment on the outcome of the procedure then.

And if anyone is thinking of having it done and has any questions, please post and I will respond (send PM if there's no response in 3 days, as it just means I haven't seen the thread). I know that it did set my mind at ease chatting to someone who had gone through it.

I was told I need to do this, Im a little bit weary like most of the people were. Is it really worth it?
I have had enough of never being able to see properly, I can see well enough but I battle with text and that is a hassle in my line of work. I was told not to go for toric or hard lenses until I had been for the treatment.
Its expensive and medical aid doesnt cover it but if it needs to be done then I will do it.

I was diagnosed with K 5years back. At the time I had RGP lenses custom fitted. They were very uncomfortable and I never really wore them, although for the first 3months I wore them daily.

Recently my vision deteriorated and I sought consultation once more, this time getting professional advise on who to visit.

My initial exam was a 45min session in which my eyes where examined, and scanned. Corneal topology, corneal thickness mapping, pressures, etc done. I was advised that for my left eye I should have epi off cross-linking to stabilise the cornea and then we could proceed with specialized K lenses(not hard). My right cornea was too thin and vision extremely poor, corneal transplant being the only option. DALK procedure was advised.
I was given 10page info sheets on both procedures and I scheduled the cross linking then with the corneal transplant to be scheduled after. The cost of the first consultation including the scans was only R1170.


So I had Advanced Corneal Collagen Cross-linking (epithelium off). Basically it went like this:
Anesthetic drops, remove epithelium, drop on Vitamin B2 every 2min for 20min, 5min of UV-A light.
The procedure was completely painless. I was given a prescription for pain meds and sleeping tablets. About 2hrs later the pain started and was intense. I had to keep the eye closed out of pain, but it was manageable. When I woke up the next day the pain was completely gone, just a little scratchy on the eyelid. After a week the eye was completely recovered. I had eye drops for 2weeks. Almost 1 month later now and I feel the vision is slightly better.
Advanced cross linking uses a different UV light to regular cross linking so that only 5min of light is needed instead of 30 min. Discovery medical aid pays for the procedure, Profmed which I am with unfortunately does not. It cost R6810 for the one eye.

I scheduled the corneal transplant for the right eye, but an opening became available and I had it done this week. I had a Deep Anterior Lamellar Keratoplasty. Which is basically a cornea transplant keeping the very bottom layer of the cornea. I went in at 8am and walked out at 12 with a new cornea. The pain was far less than the cross linking, just a slight scratchiness for the first two days. I have to sleep with a clear plastic patch at night for 2weeks and during the day glasses for protection. It's 4days later now and vision is already better than before and improving daily, the tearing has also stopped. I have eye drops for 2weeks and then a checkup. At 4 months stiches might be taken out strategically to encourage the shape. The rest of the stiches will come out at 12 to 18months. The medical aid, Profmed, covered everything except for the imported cornea. They covered R12k and its cost was R25k. There is a shortage of corneas available in SA, but over supply in USA. The stitching is extremely precise, and came out perfectly.

I'm very happy with the results thus far but would suggest anybody with K find a good specialist and take their advise. Mine explained that I was never a good candidate for the RGP lenses I had due to the particular shape of my corneas, the lid would always be scratchy. It was also explained that I was not a good candidate for in-tacts either. At the first consultation he spent a good 30min with me discussing the options and why certain treatments were not suitable while others were for my particular eyes.

Rocket-Boy said:

I was told I need to do this, Im a little bit weary like most of the people were. Is it really worth it?
I have had enough of never being able to see properly, I can see well enough but I battle with text and that is a hassle in my line of work. I was told not to go for toric or hard lenses until I had been for the treatment.
Its expensive and medical aid doesnt cover it but if it needs to be done then I will do it.

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I went for epi on because its less invasive. I was extremely unlucky that I had some deterioration in my left eye because of it, but very slight. Since then though I have had zero progression of the disease and wish I had done this sooner.

I am on discovery and they did not pay, although this was about 2 years ago or so.

The epi off is much more invasive and studies i have read seem to indicate that it is not that much better than epi on. Doctors seem to be arguing over it, but anything less invasive is always a win for me

syntax said:

I am on discovery and they did not pay, although this was about 2 years ago or so.

The epi off is much more invasive and studies i have read seem to indicate that it is not that much better than epi on. Doctors seem to be arguing over it, but anything less invasive is always a win for me

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My specialist said that Discovery only recently started covering cross linking and they are currently the only ones.

The recovery isn't that bad for epi off, 1day of pain and then after a week I was fine.

I would let the specialist decide about epi on/off for your specific cornea.

DanH said:

My specialist said that Discovery only recently started covering cross linking and they are currently the only ones.

The recovery isn't that bad for epi off, 1day of pain and then after a week I was fine.

I would let the specialist decide about epi on/off for your specific cornea.

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I went to a few specialists and made my mind up from there. It also depends on your current state, age, corneal thickness etc as well. Each case should be taken on its own merit.

syntax said:

I went to a few specialists and made my mind up from there. It also depends on your current state, age, corneal thickness etc as well. Each case should be taken on its own merit.

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Yes, I agree with you.

I mean that one shouldn't decide on epi on/off before hand, rather find out what's best for your cornea.

I have no idea why I never updated what happened.
I have had my left eye done(epi off)
It was pretty painful recovery wise!
I still have to have the right one done, interesting that discovery supports it now, they didnt when I had the other one done.
Will definitely look into it as I need to get contacts for sports and Im not keen on the hard lenses.