I'd like advice on cross-linking

[JamesH]

Hi there,

I'm 29 and have a mild to strong keratoconus in my right eye, my left is unaffected as yet.

Does anyone have experience of the collagen cross-linking technique in the UK? I am looking into having this done to prevent it getting worse, as at my last yearly scan it has progressed a lot.

Any advice on a good location close to London would be great. Also, if anyone has had their operation funded by the NHS please let me know. Apparently all recent applications for the £2000 (apx.) operation have been rejected, due to funding cuts .From my research, the cross-linking treatment is free in other countries like France!

Thanks for the forum! I'm really grateful for any advice,

James

[longhoc]

Hi James, big welcome to the forum.

Many of our members have had experience of Crosslinking. Generally the results are deemed very positive. Hopefully some of the people who know from first-hand experience will be along soon and can give an eye-witness (sorry, that is very lame I know) account.

Unfortunately no London NHS eye unit currently offers Crosslinking. It is available outside of London but not anywhere you'd call near. Yes, the French health service is very good in this regard, probably the last vestige of true public health provision that is not subject to increasingly obvious constraints in the world. That said, the NHS can be prodded into providing answers if you've got the will to do it -- but prodding is what it takes on occasions. I'll send you a private message with my thoughts on private alternatives.

Anything else you'd like to know, just ask.

Best wishes

Chris

[JamesH]

Thanks Chris, that's super helpful. Will look out for some replies.

Good to hear cross-linking's had good results!

James

[dalbeath]

My KC progressed very quickly, it was too late to have my left eye cross linked (cornea was too thin by the time I was offered it) but I had my right eye done as soon as it showed signs of KC and it stopped it in it's tracks. It's not a nice experience to go through at the time or for the first week but after that I was glad I had had it done. Not only has it stopped the KC progressing but it has flattened my cornea and slightly improved my vision.

I paid privately. Cost £1200

[JamesH]

Thanks, I saw the treatment is quite involved and means a least a week off work but the long-term benefits are completey worth it.

Did you pay £1200 in the London area?

James

[dalbeath]

No, I'm in Scotland.

Depends what kind of Job you do. I had mine on Friday eve, about 5pm and was staying in a hotel that night as it was 2 hours from where I live and they wanted me to be close in case I had a problem. I actually had dinner in the hotel and felt great, then about 8.30pm it was very sore. I had a bad night. All day Sat and Sun I was not worth damn. Then Monday felt a lot better. By Wed I could have gone back to work if I had an office job (I'm self employed and work on a farm)

I would not want to do it again but the benefits definitely outweigh the pain. One weeks pain for hopefully a lifetime of stable vision.

[itansey]

i got CXL done on my left eye in September 2011 for £1,100. It was done by the Centre for Sight in London, i'd highly recommend them. You will need a week off work after the procedure.

[JamesH]

Great, thank you. I'll make some enquiries there too.

Thanks to everyone for the advice. I'll let you know how I get on!

james

[caroline6505]

Hi

I had crosslinking in my right eye in June last year, and my left eye in July at the Centre for Sight in East Grinstead. Cost was about £1100 per eye if memory serves me correctly. Have to say that I was neither up nor down after having had crosslinking in my right eye, but my left eye was a different story – I found I could barely open my eye for a couple of days and it was quite painful/stingy. Both eyes felt like I had sandpaper in them (and so wasn't a big deal) everytime I blinked. It was more of a sensation rather than discomfort if that makes any sense. I'm a graphic designer and work on a computer full-time. After having the procedure on a Wednesday, I was able to go back to work on the Monday. If I'm being completely honest, I chose not to drive for a period and I felt that it took my eyes nearer 3 months to feel like my vision was on a par pre-op. Since then, I've been one of the lucky ones where my vision has actually improved (only in one eye, since I've had a wedge resection in the other) which is a bonus, though it shoudl be noted that the aim is purely to halt progression not improve vision.

Best wishes with whatever you decide.

C.

[JamesH]

Thanks Caroline.

I have booked for a consultation and probable operation next month with Centre for Sight too. The discomfort sounds pretty bad post-op but it will be worth it and compared to using a rigid lens every day that continues to irritate me, it can't be bad.

For anyone looking for the same treatment, the clinic were able to book me in quickly.

james