Hi all advice please

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Anne Klepacz
Posts: 1996
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Hi all advice please

Postby Anne Klepacz » Sat 15 Jul 2017 4:01 pm

Makes me cross too! While it's true that most people's KC stabilises around 40, there are exceptions, so beware of any categorical statements of 'can't progress'!
Regarding CXL on the NHS, the KC Group does have a list of hospitals offering this which was the result of a survey done at the end of 2015 so there may be more now that we don't know about (and not all hospitals replied to the survey which was carried out by a consultant in the NW). See the item on Crosslinking on the NHS on page 8 of this newsletter.
http://www.keratoconus-group.org.uk/new ... ev%20B.pdf
As ever, we'd love members to tell us about hospitals that have recently started offering CXL so that we have up to date information.
In Yorkshire, Sheffield has been doing CXL for many years now.

Posts: 4
Joined: Wed 05 Jul 2017 5:38 pm
Keratoconus: Yes, I have KC

Re: Hi all advice please

Postby Lewigreg » Thu 07 Sep 2017 9:05 pm

Update all.

I've been seeing Mr Khan and The Yorkshire clinic since July. I've had a couple of scans and these have been compared to my scan last year. There has been progression although minimal on the scans. I can however tell my left eye (good eye)vision has blurred slightly over the year.

I'm currently discussing kerrarings to my right eye (really bad eye) and then potentially cross linking. Mr Khan has advised that due to my eczema and allergies etc there is increased risk in particular with the cross linking. I've been told the risk is the conrnea melting :-0 there has been a couple of cases at Leeds where this has happened.

Obviously not what you want to hear. This then results in a cornea transplant which comes with further risks.

I think with the risks Mr Khan wants to see how my right eye goes before attempting anything in my left eye. My right eye is close to needing a transplant, so it could be needed if I dont do anything and is a risk if I do have the cross linking.

He wants to (if all goes to plan) also crossblink my left eye.

I've got a little boy and I'm a graphic designer so it's all scary stuff.

Anyone had cross lining and have eczema, allergies etc?

What results are likely with the rings?

Any treatment I have will be at St James Leeds as the Yorkshire clinic don't have the equipment.

I've also got new hybrid lens now which are a lot better but I'm struggling to get them in. From my point of view these will only delay progression though so it's not a long term fix.

Frustrating I wasn't treated on my right eye sooner.

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