Has anyone had collagen cross linking?

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electricheadx
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Re: Has anyone had collagen cross linking?

Postby electricheadx » Thu 14 Oct 2010 8:48 pm

Its hard to say really.
From my own experience, The treatment worked well in my left eye and regressed the KC somewhat. It changed very little in the right eye.
Just remember the goal of the treatment is to stop the KC and not to reverse it. If it does regress its a bonus really.

Ladyburd
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Re: Has anyone had collagen cross linking?

Postby Ladyburd » Tue 02 Nov 2010 2:55 pm

Hi Gavin

I'm looking at the ins & outs of cross linking - How did you manage to get it paid for? Did you declare your KC to your insurers when you took the policy or is it a works policy - who are your insurer?

I live in Glasgow & i think I'd have to go elsewhere & pay for it as I don't have any insurance (yet)

Thanks

Cx

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Lisa Nixon
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Re: Has anyone had collagen cross linking?

Postby Lisa Nixon » Wed 03 Nov 2010 9:04 pm

My son is having CXL at the Royal Liverpool on 25th November. It's NHS, saw his consultant in August so it's come through pretty fast. Will let you know how he gets on.
Only Robinson Crusoe got everything done by Friday!!

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Re: Has anyone had collagen cross linking?

Postby Eileen1359 » Fri 12 Nov 2010 3:55 pm

Hi Lisa
My son has been told toay at St Pauls Eye hospital that is to have Collagen Cross Linking. Unfortuantely I was not able to attend the appointment due to work commitments but his older sister went. From what they have told me it appears that this is meant to slow the progress and should be quite painless.

Good luck to you son hope everything goes OK. If you could let me know how he gets on I would be really grateful especially with regards to the after effects as my son has recently started university and would like to know the likelihood of him having to miss lectures.

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Re: Has anyone had collagen cross linking?

Postby Lizb » Fri 12 Nov 2010 7:21 pm

I took 10 days off work after crosslinking, though my days are 8-10 hours in front of a computer screen in artifical light. i was able to use my home laptop for short periods after the first three days. for lectures, he could always arraange to record the lectures so he doesnt miss anything, and ask for all handouts/presentations to be printed out in large print in advance for him to be able to read. Chances are he is only going to have one eye done at a time, so hopefully he will be able to manage with the other eye whilst the other is recovering...
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Re: Has anyone had collagen cross linking?

Postby Lisa Nixon » Sat 13 Nov 2010 9:02 pm

My main concern is that we're going to Liverpool on the 19th for a check up on his right eye which had a corneal graft on September 2009. His vision hasn't improved much so I'm thinking that they may well take the stitches out. Hopefully this will improve his vision so that when he has the CXL the following Thursday he'lll have an eye to use while that one recovers. We're staying over in Liverpool for a few days in case we need to go back to St Pauls - downside of being on the IOM, you can't just jump into the car! Mike's a prison officer so I'm not sure how much time he's going to need off work, obviously he's in contact with prisoners so needs to be careful. I've done a lot of reading about CXL and it definately sounds worth a try. I would have definately had it done had it been available when my eyes were deteriorating.
Only Robinson Crusoe got everything done by Friday!!

Eileen1359
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Re: Has anyone had collagen cross linking?

Postby Eileen1359 » Sat 13 Nov 2010 9:48 pm

Thanks for the replies. It came as a bit of a shock yesterday as at his last appointment the consultant said that it seemed that things has stabilised really well and didn't envisage having to do anything for some time.

I have printed the information sheet from this website for him to take to uni to let them know what the condition is and what they can do to help. The consultant is also providing a letter explaining the condition and what the procedure will entail, so hopefully they will be sympathetic towards him as he seems to be doing so well at the moment.

Lisa hope everything goes OK for your son, which I am sure it will.

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Re: Has anyone had collagen cross linking?

Postby Lisa Nixon » Sat 13 Nov 2010 11:22 pm

Thanks Eileen. We didn't manage to get Mike to the Royal Liverpool until June 2009 despite me having the condition. We went thinking that Mike would need specialist lenses for his worst eye. Mr Batterbury took one look and said he needed a transplant! Things have moved so fast since then, but Mike's doing really well, no problems with his job and back to playing football. He keeps the his boss informed and there's no problem getting time off for hospital checks etc. I think the CXL will make a big difference and I'll keep in touch and let you know how we get on.
Only Robinson Crusoe got everything done by Friday!!

Lizb
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Re: Has anyone had collagen cross linking?

Postby Lizb » Sun 14 Nov 2010 11:08 am

i am at liverpool for intacs on thursday 18, staying overnight as having general anthestic in the afternoon.
Life is too short for drama & petty things!
So laugh insanely, love truly and forgive quickly!


I´m not strange, I´m just not normal

Every sixty seconds you spend angry, upset or mad is a full minute of happiness you never get back

caorr
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Re: Has anyone had collagen cross linking?

Postby caorr » Wed 19 Dec 2012 1:59 pm

Hi there, Gavin I just wondered if you could give any details on how you/your hospital managed to get the insurance company to pay, as that's exactly what I'm trying to achieve?! Out of interest, would you mind saying which company it was? Many thanks, Cam


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