UK Keratoconus Self-Help and Support Association

Hi, I went to the hospital st guys and thomas in london on monday and i saw mr o'brart who is the leading eye doctor/surgeon. He said that i would be a good candidate for this teqnique called c3r crosslinking but that as i am not 18 i cannot have it done on the experimental trial on the nhs. He did say that he can do it privately as it can be done privately, but they have just not been able to do it on the nhs because its new on the health service. I was just wondering if anyone has had this done and if they have any advice for me please leave a post. thanks.

Gabriela

How long would you have to wait until you are over 18 and able to give informed consent to your participating in the trial of a speculative procedure?

All the best

Andrew

Hi well i turned sixteen this year so that would mean id have to wait another two years before i could have this procedure done on the nhs but by then my cornea could have already started to thin which then would mean that they wouldnt do it, because they will only do it if the cornea is a certain thickness. My parents said that within the next year we should start thinking aobut me having this procedure done privately. gabrielaxxx

All the best with that; please keep us all up to date with developments.

Have a wonderful Christmas

Yours aye

Andrew

Hi

I am thinking about getting this done to, i have to go to a clinic in London called the london vision clinic in feb to see if i am suitable. I am 25 tho, i will keep you updated on how i am getting on and will pass on any info i get.

Have a good crimbo

pete

hello everyone,

i had it done in both eyes recently. right eye on 13th december and left eye on 17th december. i went to the london centre for refractive surgery on harley st in london (http://www.lcrs.co.uk) and i have to say all the people there were very nice indeed. it cost me £900 per eye, but i got 0% credit for one year so i pay it off a bit each month.

all the results so far show that it halts the progression of KC. no one who has had c3r has later on needed a corneal graft. yes it's a relatively new treatment, although having said that it's been carried out since the mid-90s in some european countries and for a few years in the uk. the risks involved are v minimal. therefore in my view it's worth just taking a chance of this treatment as you have very little to lose and everything to gain.

to gabriela: i think you should get it done before you are 18. I don't see the point in waiting and allowing your cornea to change shape and degenerate when you could stop it very easily with this treatment. i know it costs a lot but i think it's a good investment. if i had a child with KC i would take them to get it done early.

as for the operation, it doesn't hurt and it only takes an hour or so. a lot of the time they are just putting drops in your eye or you are looking into the uv light. the eye is numb so it doesn't feel anything anyway. afterwards you can just sit up and walk away (you will have to wear an eye bandage though). i was in pain the evening after i had it done, both times. i took all the pain killers they gave me but it was still painful. however, the good news is the next day after i'd been to sleep i was pain free.

i'm going to try scleral or kerasoft lenses next as these wont rub against the cornea. hopefully these will be comfortable for me. i could also look into getting intacs done.

anyway just message me if you want to know anymore about how i found the cross linking operation and afterwards.


best wishes,



tim

Tim, after you had the operations when did you start wearing your contact lenses? and how is your vision now after the operation better or the same? I think this would be a good thing for me to have done but i just need to know more about the procedure and the after effects of the operation. Thanks for all the advice but if you have any more information please post it so i can get a better idea of what it is like thanksxxxxxx

hi gabriela,

apparently most opthamologists say to wait about a month before you wear lenses again. i've not worn mine yet, i will do in about a weeks time though.

after the operation my vision was cloudy for about a week. it's now about the same as before again.

some ppl have improved vision afterwards - although the aim is really just to prevent future degeneration of the cornea. you might also consider intacs or other options to improve vision. i've not heard of anyone with worse vision after c3r, some people can take a few months to get back to normal or to notice improvement though.

at the london centre for refractive surgery (http://www.lcrs.co.uk) they gave me a free consultation with no obligation to proceed so maybe you could go there and ask them for more details. there are a few other clinics in london as well that offer c3r you can google them maybe.

the operation really isn't that exciting. i can't remember all the things they did but what i recall is you have a few different eye drops put in whilst in the waiting room before you go into the operating room. the eye gets numb. you go in, put on a hair net and a blue operating top, lie down.

next they clean the eye and the area around it. they have to use a thing to open the eye so you can't blink fully but it doesn't hurt at all. they wipe the eye with some alcohol based liquid. they put in more eye drops, after about 20mins they turn on a uv light, it's not v bright, you just look into it for 30mins. they put in eye drops every 5 mins or so. if u feel any pain or stinging they can give you more local anaesthetic eye drops. you can talk to the surgeon and nurse all the way through.

at the end they put a bandage on the eye - like a soft lens which you leave in a few days. then they put an eye patch bandage over your eye. then you can just get up and walk out. they make you a hot drink!

you get given eye drops to use for about a week and some pain killers for the few days after. the operation doesn't involve needles or cutting so don't worry about it! i was never in any pain at all during the operation, but i was from about 1 hr afterwards and for the rest of the evening. you can take loads of pain killers though including normal over the counter ones. the next day i was fine.

hope that helps - any more questions just say!



tim