UK Keratoconus Self-Help and Support Association

Hi there, I was diagnosed with keratoconus a few years ago, and have been doing a lot of research regarding different treatments etc (to which this site has been of enormous help).

After much hard thinking, i have decided that i would like to get collagen cross linking done. I know that this will stop the progression of my keratoconus, I also know that it may somewhat flatten my cornea, resulting in improved unaided sight without rigid lenses.

From what i gather, this strengthening of the cornea may mean that i wont be able to use rigid contact lenses anymore to correct my vision. This could mean that after collagen cross linking, my aided vision with soft lenses/glasses, my be worse then, my aided vision without cross linking and with rigid lenses.

If this were to be the case my option would then be to get Intacs.
Some ophthalmologists i have spoken to tell me that intacs may be less successful if they are installed in a cross linked eye as the cornea will be stronger, and will change shape less readily.
Other ophthalmologists encourage (example Dr Reinstein at the London Vision Clinic) cross linking before the installation of intacs, as they say the eye must be stabilized first.

This leaves me with a dilemma...get intacs installed first, and then cross link, or the other way round, which would be best?

Does anybody have any ideas on this?
Thanks.
Riz

PS. I called a number of clinics and ophthalmologists to inquire about the price of C3R, and i found that this was quiet a time consuming process. Would it be helpful to anyone else if i were to post my list of clinics and prices up on this forum?

Riz Welcome,

Yes you have come against one of the dilemmas in KC for a patient, but I would say stabilizing your cornea should come first. Correction can come in various forms afterwards.

The prices vary not only for the treatment, but for the follow ups (there are many) and different levels of testing done (these can vary a lot too)

Advice from an italian doctor that spoke with me was:
"FIRST Intacs.. so flattening the cornea immediately..
and AFTER increases the rigidity of corneal collagen and its resistance to keratectasia "

We need more study, and think that at next CCL Congress we have more information about this..

IMHO.. Crosslinking block keratoconus.. and not in every Kcers flat the cornea..
so for me this is the right approach

scaristar and riz

welcome to you both!

All the best with this, riz. I have caused some controversy here by suggesting that the jury is still out on C3R stopping the progression of KC, and it is interesting to see that the advice scaristar got in Italy seems to confirm this.

Keep us posted on how things go for you.

Andrew

Indeed Intacs don't always work as wanted to, and may in fact stretch the cornea, and if it needs to be taken out it may not be a good thing after the horse has been bolted... lets just say. Depending on what happens after cross linking, contact lenses may just be fine to fit nicely, its less invasive. But its all debatable because it depends.

Thanks for all your replies!

After speaking to a few different ophthalmologists in London, nearly all of them seem to be of the opinion that getting cross linking done first is the best choice.

Going with the gamble that after C3R, i may not need Intacs, i think i will get the C3R done first...

Andrew you do have a point, ultimately its impossible to know the long term effects of cross linking as the treatment has only been properly available for the last 6 years. Although saying that, it has stopped progression in all patients who's keratoconus had not progressed too far.

PS.I think I'll post my list of prices up, its pretty comprehensive, and should be helpful to anyone looking to get the treatment done.

Hi Riz
Like you I researched different clinics and agree there is a difference in pricing. I have had C3R done first - it was my consultants opinion that it was correct to do it first as it could improve the vision and then Intacs might not be needed in both eyes. In my better eye it has given me better vision - I'm back to 6/12 in that eye but I'm still not 100% recovered so that may change. Personally I see no point in doing Intacs without C3R - if KC is still progressing then the Intacs would probably need changing fairly regularly is what I was told by one consultant. Good luck with whatever you decide to do !
Helen

Riz and Helen, your guys know your thing! you guys are fluent in Keratoconus!

Hi Riz and welcome

This is a difficult question to answer as to which way round you should have treatments done.

As with any treatment there can be no guarantee of success, either with C3R or INTACS. The caveat to this however is the INTACS is fully reversible whereas C3R is not.

Not being medically trained, I can only suggest in layman's terms that you try INTACS first on the basis of there is nothing to lose and potentially a lot to be gained, if it doesn't work out for you they can be removed and you will have lost nothing. In my case having INTACS implanted into my right eye has drastically improved my aided vision. I now have 6/5 aided in right eye and my left (also KC) has improved to 6/6 as it is no longer straining to do the work of both eyes. In the 6 months since my operation my KC has stabilized in my right eye with no sign of further progression.

Whichever option you decide to pursue I wish you well and hope that it will be as successful as my treatment. Please keep us updated as you progress.

Karl

Its sounds like horses for courses hopefully not as wild as things pan out

Theres a PM I wanted to send you Karl, just going to write it now