UK Keratoconus Self-Help and Support Association

Hi there. I'm just looking for some opinions really. Sorry for the length of the post, I find it quite therapeutic to write down my thoughts on this as it helps me gain perspective. So as the title suggests, I'm considering CXL, starting with my bad eye, and a few months later, my good eye. This would be a proactive decision, as opposed to a reactive one. I'm 30 years of age and have mild KC in one eye, and moderate KC in the other. I inherited the condition from my father, who had severe KC and a cornea transplant at age 22. This is a consideration for me. I seem to be affected less than him. I hope it can stay that way but with KC you just never know,

My good eye has been relatively stable, so this is the conundrum for me, do I leave it or have CXL? Although ghosting has got a bit worse over the years. I can get by without contacts although my vision does bother me, my colours are quite washed out, peoples faces are blurry and it's generally a dull affair. I struggle with lenses, the best combination I have found is a SoClear scleral in my good eye, and a KeraSoft in my bad eye. My right eye is a pain, colours are far richer than in my good eye, and a hard lens just seems to magnify this, leaving me with no depth perception and headaches if I wear one, whites are especially blinding. A kerasoft seems to balance the colours but give me only slight visual improvement. It's not what I hoped for. I could live with this, but a good lens day seems to be followed by a bad one, where I really struggle with the Scleral lens which wears my eyes out badly, so I end up going without aids again for the next couple of days.

So CXL gives me hope, but my question is, does the reality match my hope? To me it seems a no brainer. I have the money, am fit and healthy, and it would alleviate the nagging uncertainty regarding the future of my disease. How do I know If it will stay stable for the next 50 years? I don't. I don't know what I'd do if KC affected my good eye more, I don't want it to get any worse, my independence is important. But with CXL, my hope is for 2 stabilised corneas, where I can hopefully wear more comfortable lenses. This is a dream. Who knows, maybe I'd even have the confidence to learn how to drive. There are also practical issues, I move around a lot, I love to travel, so it would be nice to have a pair of reliable spectacles or lenses and not worry about my prescription changing.

So has anyone here bitten the bullet and made a proactive decision like this to get CXL? I know the NHS only recommend it if your KC is deteriorating. But the studies seem to point high success rates, and at the risk of sounding overly optimistic, I can see myself being in that category. I would pay for a good surgeon at Moorfields, I have age and health on my side, live in a clean household and have good personal hygiene, so I'm confident of avoiding infection. I also hear less affected corneas are easier to treat, is this true? So it would give me hope with my good eye....

So would it be bonkers to meddle with my eyes as they are? It's a bit of a conundrum, so it would be appreciated to gain some perspective from anyone here really.

Thanks for listening,

Hi

I'm looking at all the options now following INTACS a few years ago

I found this interesting article:

http://www.healio.com/ophthalmology/cor ... s-research

Other studies have sited the following stats :

Keratoconus stability was detected in 44 eyes after 48 months of minimum follow-up; fellow eyes showed a mean progression of 1.5 diopters in more than 65% after 24 months, then were treated. The mean K value was reduced by a mean of 2 diopters, and coma aberration reduction with corneal symmetry improvement was observed in more than 85%. The mean best spectacle-corrected visual acuity improved by 1.9 Snellen lines, and the uncorrected visual acuity improved by 2.7 Snellen lines.

CONCLUSIONS:
The results of the Siena Eye Cross Study showed a long-term stability of keratoconus after cross-linking without relevant side effects. The uncorrected visual acuity and best spectacle-corrected visual acuity improvements were supported by clinical, topographic, and wavefront modifications induced by the treatment.


I'd say if you are suitable it looks like a good option. Thats my own opinion, but the recent research findings look very positive. However, I have no idea the age group of the eyes or the severity if the KC in this study group

Hi Josh,

If I were you I'd go for it. I've had cxl done on both eyes and whilst it isn't pleasant for the first few days, after that it's fine. The risks are minimal and as long as you practice good hygiene for the first 2 weeks after the operation you'll be fine.

Admittedly my eyesight was deteriorating when I decided to have it done, but nevertheless I think anyone with keratoconus should consider it because like you say, you don't know how things might go in the future. Additionally, if your cornea gets thinner over time then you won't be able to get cross-linking done at all.

Cross-linking also made it easier for me to wear contacts because my cornea was flatter afterwards - although I would say you need perseverence in trying to find the right lens (it took a long while before I found lenses that were a good fit and were the right prescription). I'd also recommend getting lenses from a good quality private practitioner who understands keratoconus, as sometimes the NHS isn't great at dealing with these things (especially because you can be waiting a long time to get appointments, and you may need to go back-and-to a lot before you find the right lens).

Hope that helps!

I had Femto pocket cxl done. Less invasive and easier/quicker to recover from than full 'Eli' off cxl.

Not many use this method. David Jory at ultra vision clinic in Harley St did mine.

Happily recommend him. Super chap really cares, knows his stuff and will advise what's best for you most importantly. I only have one eye and that has KC so David said this was the least invasive and least risk of infection. I bit the bullet as I couldn't tolerate rgp's any more and wanted to stabilise my cornea.

5 months on and things are slowly improving. I'm managing the recovery and using kerasoft lenses to get me through and hopefully continue to wear them as long as they are effective- very comfortable. We are all different though of course.....!

Thank you all for your replies, very helpful information!! I think my bad eye is a certainty for CXL and I'll see how that goes before making a decision on my good eye.

Ladyburd - thanks for the article links, encouraging reading and gave me much to chew on.

James - Hmmm, you have got me thinking as the whether I should go private. I have moved back home so I need to transfer my care anyway. Think I may pay just the extra and get someone who is skilled fitting lenses privately. I have always seemed to struggle with lens fitting via the NHS anyway (2-3 appointments over a couple of months has been frustrating in the past). Great to hear that you are finding it easier to wear contacts due to the flatter cornea, that's certainly my hope.

Nicky - thanks for the recommendation, I have looked up David Jory's details. How much did you pay form Fento Pocket out of interest? I may get it on my good eye. Glad to hear your recovery is slowly improving! Encouraging to know you are now on a Kerasoft lens too.

£1650 plus £60 for an initial consultation I think.

He may recommend something full 'epi off' for you but will talk you through all possibilities.

Kerasoft are great lenses. So comfortable. Just be prepared for the fact you will have haloes at night and have to be patient as I am told at every fitting!