UK Keratoconus Self-Help and Support Association

Hi,
At a recent appointment with my consultant we discussed the possibility of implantable contact lenses either ICL's or Artisan. I had previously been told that my only option was to wait for a cornea graft in both eyes but as i am 15 they don't want to do this yet. Has anyone had any experience of this?
Thanks

laura

I've heard of it and have heard good reports of the procedure and its outcomes.

Andrew

Hi Laura,
I don't have experience of this, but it's been mentioned by several specialists at our conferences and meetings recently. My understanding is that it can work well in correcting the vision when the KC is stable (eg after CXL or post graft), though not if KC is progressing.
I hope there's someone here who has had it who'll be able to tell you more.
All the best
Anne

I asked my ophthalmologist about this procedure. He said the vision was too bad in my right eye (20/200) for it to help, although it could help my left eye (20/60).

I hope it works for you!

Hi Laura,

As a practitioner, I have seen this done many times and it can be very successful. What I would say though, is that generally it is done in conjunction with cross linking as otherwise, if you are still progressing, it will not be a stable option. Was this mentioned?

Also, if they think they can get a good result with this procedure, then I assume grafting was suggested not for scarring but because fitting with contact lenses was difficult? If this is the case, then have all contact lens options been pursued?

I only say this because 15 is quite young to have any surgical procedure like this done, as in the implantable lenses will have to be in your eye for a very long time. My general advice would be to explore all CL options for as long as possible before embarking on surgical options of any kind.

Lynn

Hey,
I had crosslinking in my better eye just over three years ago as it was not possible in the other eye, the keratoconus hasn't got any wose in the cross linked eye since. I've had keratoconus for 8ish years now and unfortunately it progressed quickly, the crosslinking came a bit late for me as my better eye is at best 6/60. I do have scarring on my worse eye because of hydrops a few years ago. Over the last 5 years i've tried loads of different types of lenses but i've had alot of trouble tolerating them because of allergies, i recently tried using cyclorsporine to help on this side of things but it didn't seem to have any effect. My consultant told me that my options were to either carry on as i have been with no visual aids or consider the implantable contact lenses. Coping with studying for my GCSEs has been a struggle recently and as i wish to carry on with A levels and go to university, its definately made me consider the pros and cons of the surgery. I havn't heard many negative reports but obviously there's always a risk, especially if i'm considering messing with my better eye.
Thanks for the help

Hi Laura,

I would strongly advise against Icl's. My Keratoconus was stable until I had iridotomies for ICL's. I never went ahead with the ICL's because of the horrific effects the iridotomies have had on my vision and has also caused my keratoconus to progress from all the inflammation the iridotomies caused. (To be able to get an ICl the surgeon must put at least one hole in your iris to allow aqueous fluid to flow freely from the front of your eye to the back.) If they didnt perform the iridotomy you would end up with glaucoma. There are many people who have positive experiences with ICLs but I definatley dont recommend it if you have Keratoconus. If you are interested have a look at a web based forum on the prevent blindness america website called iridotomy 9. It is the latest dicussion forum about negative effects people have with iridotomies. I now not only suffer from keratoconus but extreme sensitivity to light, glare and horizontal lines accross my vision (because of the eyelid covering and uncovering the iridotomy hole.) Its just not worth it. Anyway you should make your own calculated decision but id definately get a second or even third opinion before proceeding.

Kind Regards,

Nate.

Hi,

I have had CXL in both eyes and had a Toric ICL implanted into my left eye (my good eye) 2 months ago. All good so far (touch wood) and it was not a painful procedure at all, my vision was 20/10 the next day (bilateraly aswell despite my right eye being visually useless).

I am now in the process of getting it arranged for my other eye - however my vision is just so bad in that eye due to the high 'astigmatism' caused by the KC, it will just improve it slightly and not get it as good as my left. Though I am considering a tiny bit of laser to smooth the 'coma' that is causing it to try and improve it further.

Bear in mind it is expensive - it cost me 16,000 UAE dirhams for one eye (approx. 2,700 GBP) but I am in the UAE and everything is expensive here so I am not sure of the cost in the UK. I am lucky that the cost is covered by my company. However, I would still have paid that much myself as it has been the best money I ever spent, as I have spent 10 years being fed up of KC and lenses and glasses etc. I feel like I am finally getting somewhere with my vision.

Good luck and hope it works out.