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Has anyone experience of Crosslinking for kerataconus sufferers?

(18 Posts)
minimu1 Mon 06-Jun-11 13:23:06

Title says it all really. My son has kerataconus and the idea of trying to stop it progressing sounds great but his optician had no idea about crosslinking. We are waiting for his hospital appointment but I wanted to gem up on all the facts before I see his consultant. TIA

mumatron Mon 06-Jun-11 13:31:26

No idea, but I have this and am interested in hearing the replies.

I was told there is nothing that can be done for it.

minimu1 Mon 06-Jun-11 13:39:54

This is what I have found out so far. link here

It does not cure kerataconus but can slow down the development. There seems to be quite specific criteria eg not too thin a cornea for it to be performed.

I am finding the lack of knowledge from the optometrist quite frustrating wish I had more medical knowledge in eyes!

shitmagnet Mon 06-Jun-11 15:01:58

Message withdrawn at poster's request.

minimu1 Mon 06-Jun-11 15:19:04

He is 15 but been diagnosed since 9. The ophth are seeming to take the just wait and see approach and as crosslinking is not available on the NHS don't offer it as an option. So I am having to research privately and the private ophth are pushing for the treatment but I feel I need an unbiased opinion.

Thank you for replying it is interesting to hear at least your surgeon has mentioned it to you.

DBennett Mon 06-Jun-11 17:08:58

Corneal collagen crosslinking does have a lot of promise but it is a little early for the hype which seems to surround it.

At the moment we have good data up to about 3yrs post procedure and it appears to slightly reverse the effect of the keratoconus and greatly slow further progression.

This doesn't mean you're likely to get rid of contact lenses (which 95% of people with keratoconus need to see well).

You might do but it's more likely to mean that you can get better results from contact lenses for longer thus avoiding a corneal graft (which a small proportion of people with keratoconus need eventually).

There are risks and because it's early days it's not quite known how to avoid them through patient selection yet.
It does appear younger and milder is safer though.

And of course, because it's quite new, no-one has any idea what will occur long term.
And there could be 50yrs to think about.

minimu1 Mon 06-Jun-11 18:32:37

DBennett thank you for replying. We have found a report that has 8 years of evidence with patients from Germany that have had the treatment but as you say it is so new.

However if we do not do it while the keratoconus is mildish we may lose the window of opportunity.

It obviously would be good to try to avoid the need for a graft and apparently my son may be a greater risk as he was diagnosed young - again I am not sure of official evidence on that.

Oh wish we had a crystal ball!

emmspemms Mon 06-Jun-11 19:19:22

My son has kerataconus too , he sees a consultant , and we are waiting for a second opinion , with a different consultant ( which I am sure will only tell us what we already know )
Son finds hard contact lenses too painful to wear , and the soft ones don't make enough difference, so he won't wear them either .
Consultant has mentioned cross linking , but I'm not keen , it's all a bit new, and I'm not sure I want to pay for someone to experiment on my sons eyes !
He's 16 ( GCSE year ) and was diagnosed about 4 years ago.
Nice to know were not alone .

minimu1 Mon 06-Jun-11 19:35:32

emmspemms sounds very similar to our situation. He is sitting some GCSE this year and some modules so just a year behind you. Not a good time to consider eye treatment!

My DC could not get on with contact lenses as too painful due to the condition. He can manage with glasses just at the moment and that is what draws me to the crosslinking (however he needs new glasses every 3 months or so)- if it could stop the kc then maybe glasses would be fine for a longer period but like you I do not fancy an experimental treatment on my DC.

As it is private treatment it does feel a bit like a hard sell when you acquire about the treatment.

It is so hard as it is our sons eyes, it would be easier to make the decision for myself.

Just an aside does it take ages to get your new lenses? - it seems to take about 5 weeks to get them as they have to be custom made in I think Germany.

emmspemms Mon 06-Jun-11 22:37:51

www.nkcf.org/
We have found this to be useful ,

muddyangels123 Mon 06-Jun-11 22:54:08

I've had Kerataconus for many years (20+). I have no sight in my right eye.
I tried wearing a contact lense, but i just couldn't get on with it.
I have been told i need a graft, i have chickened out so far.
I wouldn't wish this on anyone, but i'm glad i'm not alone.

shitmagnet Tue 07-Jun-11 11:58:58

Message withdrawn at poster's request.

minimu1 Tue 07-Jun-11 13:37:03

Thanks for the link emmspmenns

Muddy angels it is a bummer of a disability I am sorry that you have lost the sight in your right eye. I have spoken to people whose life has been changed dramatically for the better after a graft but I certainly do understand your reluctance. It is a big step to take and will affect your lifestyle for quite a while when recovering. I do find it a bit odd that the NHS offer contacts etc but for many KC sufferers the very condition makes it so hard for them to be worn.

I have spoken to Accuvision who are all very up beat and have done much crosslinking - they are willing to see if it will work for my son - they were very reassuring with regard to their being little side effects. I have also spoken to a Centre for vision who are in London and East Grinstead. They cost more but seem to have a more detailed consultation eg 3 hours as opposed to 1 hour at Accuvision.

We are off to see them later in the month - I will let you know how we get on.

rabbitstew Tue 07-Jun-11 15:39:57

I had laser eye surgery done at the Centre for Sight in East Grinstead and would thoroughly recommend the surgeons there for their professionalism and patience - I had a LOT of detailed and panicky questions about the procedure beforehand, having done excessive quantities of research about it, and they gave up a lot of time to answering them!!! I am sure they would be just the same with respect to collagen crosslinking. Their reputation for all forms of corneal eye surgery is also excellent (in worldwide terms, not just in the UK).

handyandrea Sat 11-Jun-11 10:39:55

Hi there Minimu1, My friend Mark was recently diagnosed with keratoconus and went for a consultation at Accuvision yesterday. He was diagnosed in one eye and the condition has progressed rapidly. He told me last night that Accuvision could stablise the condition and that he'd regain a significant amount of the vision he'd lost already through their re-profiling treatment. This was a surprise. Apparently, they're one of only 6 clinics in the world that can do this. He said they'd appeared on the BBC about it and sent me the link to look at as I work for an optometrist and was interested to know more. tinyurl.com/6heuhse
Apparently they treat keratoconus every week so know what to look for - may be that is why it doesn't take so long to do the consultation? He is booking for treatment in September. I will keep you posted. Hope this helps

minimu1 Sat 11-Jun-11 13:38:27

Handyandrea thanks so much for posting - I am hearing loads and loads of positives about Accuvue and thanks so much for the link. I think we have decided to bite the bullet and go for it <wobble> just waiting to see the consultant at the hospital in a couple of weeks and then decide where to have it done. I would love to hear how you friend Mark gets on - send him good wishes from me <random women on the internet!>

rabbitstew that is our other option East Grinstead so I am glad that they were so good for you. I guess I need to look in detail at to what they both offer and cases they have treated etc. However it is great to hear positives experiences.

It very reassuring to hear about all your experiences thanks a lot guys.

minimuu Thu 17-Nov-11 18:30:22

Just an update to say my son went ahead with the crosslinking. A pretty minor procedure as far as he was concerned. He was uncomfortable for a few days and wanted to be in a darken room but no major pain.

However things are now fantastic. His eyesight has improved (although this is not the main reason for doing the crosslinking it is a great bonus). His eye is now stable and fingers crossed should stop his kerataconus from deteriorating.

We are going ahead with the other eye next week.

cxlknowledge Tue 02-Apr-13 18:38:23

I have just found this sight and thought I would give my knowledge on this procedure. My son has keracotonus, he had lost his sight totally in his left eye and his right eye was showing signs also (PANIC!!!!) To say our local hospital was of no help is an understatement. I did a lot of reseach on cxl and found a consultant named Mr Bailey in Harley Street. My son had the procedure in April 2012 and was discharged last week. The progression of the disease has now halted and his vision improved also BRILLIANT in every sense of the word. We were recommended to Mr Sheraz Daya at the Centre for Sight by Mr Bailey as my sons left eye was past the cxl stage and he needed a transplant. Although pricey he had a transplant last July, things are going well and he is now experiencing some sight, he continues to have regular checkups and hopefully will have the stiches out in August. I now know that Mr Daya also performs cxl and would reccommend either to do the procedure.
Perhaps in time these procedures will be available on the NHS

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