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gone ahead with crosslinking
Posted: Sat 14 Jul 2007 5:57 pm
by helen jones
have just had my first eye treated with collagen cross linking. Worst thing about it was having to stare at the light for an hour without moving!Also the drops sting a bit as they go in. Pain was not as bad as I was expecting. Dare'nt open my eye so far though as it's more painful today now the bandage lens has been removed. My consultant is very confident this treatment stops the progress of KC and says lots ofthe people he's treated have had vision improvement with just C3R but I'm not hoping too much.
Posted: Sun 15 Jul 2007 1:58 am
by Sajeev
All the best to a speedy recovery, we are rooting for you!
Posted: Mon 16 Jul 2007 7:45 am
by GarethB
Keep us updated as we all want to know about the patients experience as well as the studies the doctors publish.
Posted: Tue 17 Jul 2007 8:27 pm
by helen jones
It's now day 4 - I can open my eye but it's more comfortable kept shut - my vision is very hazy and my iris looks a bit odd but I've been told this is probably due to some swelling. I'm feeling generally very tired and sleeping for England! I'm off on friday to have the second eye done - hope the first one has improved by then otherwise I'll need a white stick!
Posted: Wed 18 Jul 2007 7:24 am
by Matthew_
Helen,
Good luck on Friday. You are very brave, well done.
All the best
Posted: Thu 19 Jul 2007 5:12 pm
by bluesfan
Hi Helen
My thoughts and prayers go to you and at this time and I hope that the treatment will be a success that surpasses your expectations!
Please keep us posted and updated of your experience!
Best wishes!
Posted: Fri 20 Jul 2007 1:06 pm
by Matthew_
I asked the opthamalogists at Gartnavel about cross-linking. My KC is mild but my professional va standards make it an issue. I thought I would make an ideal candidate but apparently we have another 5 years to wait before we see it on the NHS. I understand the reasons for it, I truly do. I just have such a love/hate relationship with my lenses!
Posted: Mon 23 Jul 2007 5:35 pm
by helen jones
Have now had second eye done. At my check up I could read an extra line on the chart with my first eye. For some reason second eye was not as painful. My consultant says C3R will never be offered on NHS because it's not cost effective . ie it takes over an hour to do one patient - a lot more time than to do a graft. Intacs possibly will be done on NHS once NICE decide but I believe this will not be for several years. I wasn't prepared to wait- I needed an answer now as my vision had been stable but suddenly started deteriorating. The consultant who performed my C3R says the evidence is overwhelming that it stops the progression and that is what I want. Any actual improvement in vision is an extra bonus!
Posted: Mon 23 Jul 2007 5:52 pm
by GarethB
Graft less than an hour?
Yes I believe that is the case of a penetrating graft but the DALK I've always understood from those who have had it done takes about 1.5 hours, no different to C3R?
Gone ahead with crosslinking
Posted: Mon 23 Jul 2007 8:34 pm
by Anne Klepacz
Helen - all the very best for a good result in the second eye. Just for the record, NICE guidance on Intacs should be out in 'autumn 2007' according to their website. And there are already hospitals offering Intacs on the NHS as some of our members can testify. So the wait may not be so long for Intacs. I suspect you're right that C3R will take longer to become available but I think that's more to do with hospitals wanting to do trials first rather than how long the procedure takes.
Anne