UK Keratoconus Self-Help and Support Association

Hi All

I had crosslinking done on my left two weeks ago ( 2 nd September 2014) in the Moorfields, London on my left eye..

I had the following queries

a) I am told that i have slight Haze, which is good thing because it evidences that a reaction has taken place. This will hopefully clear in due course. 3-6 months? ---- is this normal? anything i need to concered about?

b) My vision is much better then last week but not how it was pre surgery with glasses? how long does it take before vision stabalise? When should I see an optician? Do Moorfields have specialists in the hostpital who are optemetrists? is this covered on NHS? Not sure what do i need to do. Naturally if there are optometrists in Moosfileds who can do the scans and check eye sight that would be my preference. any info on this would be greatly appreciated.

c) I am managing with my glasses currently . My left eye which is the worst eye and i got crosslinking on is ( sph - 3 , Cyl -3) - right ( sph -4). Should i be considering lenses? i have never worn lenses before, my vision could be crystal clear in my left eye if i was to move to lenses but i am confused and some help would be great from someone who was in similiar situation?

d) I was operated under my insurance policy however regular checkups which i am told to see in 3 months and the next one will be in 12 months is not covered by the insurance policy. So i will am going through the NHS route. Can someone help me understand what is covered through the NHS and the best way to go about it for example i have heard lenses are taken care of by nhs along with the topography scans, would my existing consultant have to refer me for this? Also how often are the scans recommended? is this something that is decided by the consultant.

Apologies i am very confused perhaps i dont have the knowledge as my consultant doesnt talk much in Moorfields! hence i thought i would get some advice from this forum!

Hi and welcome. I had CXL performed on my weaker eye almost 3 months ago now so I'll try to answer some questions for you...

a) The initial 'haze' for me started to die down after a couple of weeks. I still find it more blurry than normal, but my assumption is that it's because there's a change to my prescription (scans show my astigmatism has been slightly reduced) also I notice that the glare I get from lights is different than before (worse)

b) I was told stabilisation starts around the 3 month period, so any day now... but it can, in theory, take years. I have an appointment with my NHS optometrist next week to start the contact lens fitting process again. Unfortunately for glasses, I shall have to pay somewhere private

c) I use a mixture of both glasses and contact lenses. Overall, I would say that contact lenses give me better vision, but I don't always get on with them. I find that after 5 hours or so things start to get a bit blurry... and they can irritate, so I use my glasses as a rest period

d) Everyone's CXL check-ups seem to be different... mine was 2 weeks, 4 weeks and 8 weeks. I never had a scan performed at the private hospital where my CXL was done. I had to go that route as CXL isn't funded in Essex, however all my scans are taken care of by the NHS. I'm afraid I'm not sure how to get referred, my consultant actually works at the private hospital and the NHS one! So it was quite easy for me. Contact lenses cost £108 per year, all fitting trials are free, however long it takes! I started my trial in January and have been to the NHS eye unit probably more than 10 times, but I've only paid £54 so far

Hope some of that helps, Olly.

PS: As for how many scans you should have... well I'm having another along with my contact lens fitting next week, to see if I should go ahead with CXL in my stronger eye too. If it's decided not to, I am going to insist on another scan every 3 months. Be pushy

And your GP should be able to refer you to Moorfields if you're looking at the option of contact lenses. There is a large contact lens department with a lot of optometrists and contact lens fitters experienced in KC.
Anne

Anne Klepacz wrote:And your GP should be able to refer you to Moorfields if you're looking at the option of contact lenses. There is a large contact lens department with a lot of optometrists and contact lens fitters experienced in KC.
Anne

Thanks for that ann - at the moorfields do they do the topography scans as well everytime you visit the optometrists ? Also how often are the eye checkups done after cxl ?

I am due to meet the consultant after three months and he said that a scan will be done as well but I am not sure these are to be done with the optometrists or the consultant ?

I'm afraid I don't know - maybe someone with recent experience of CXL can tell you.
Anne

I mentioned that in my post! Everyone's seem to be different, but my check ups were 2 weeks, 4 weeks and 8 weeks. The optometrist has done all my scans for me...