gone ahead with crosslinking

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helen jones
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gone ahead with crosslinking

Postby helen jones » Sat 14 Jul 2007 5:57 pm

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.
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Sajeev
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Postby Sajeev » Sun 15 Jul 2007 1:58 am

All the best to a speedy recovery, we are rooting for you!
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GarethB
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Postby GarethB » Mon 16 Jul 2007 7:45 am

Keep us updated as we all want to know about the patients experience as well as the studies the doctors publish.
Gareth
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helen jones
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Postby helen jones » Tue 17 Jul 2007 8:27 pm

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!
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Matthew_
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Postby Matthew_ » Wed 18 Jul 2007 7:24 am

Helen,
Good luck on Friday. You are very brave, well done.
All the best
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Get a life...get a dog!
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bluesfan
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Postby bluesfan » Thu 19 Jul 2007 5:12 pm

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!
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Matthew_
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Postby Matthew_ » Fri 20 Jul 2007 1:06 pm

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! :x
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helen jones
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Postby helen jones » Mon 23 Jul 2007 5:35 pm

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!
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GarethB
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Postby GarethB » Mon 23 Jul 2007 5:52 pm

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?
Gareth
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Anne Klepacz
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Gone ahead with crosslinking

Postby Anne Klepacz » Mon 23 Jul 2007 8:34 pm

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
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