UK Keratoconus Self-Help and Support Association

Hi guys. Had my second CT scan yesterday, and results show my keratoconus is increasing. I want to ask for some advice and for any experiences from users on here. I've attached images of my scan...





Now the consultant said it wasn't the biggest increase he's seen, I know that, and I can tell that my vision hasn't changed that much. After he'd explained things however I asked a simply question; would you recommend I do this? He answered yes straight away. He said I could wait and see what it's like in another 6 months, but if I'm going to do it, I might as well do it as soon as possible otherwise I'm just waiting around while it's getting worse. Do you agree with this?

So, CXL...

I've been told I cannot get this paid for on the NHS. If I went to Moorfields, they would only do it on the NHS if my local area paid for it, but there's no funding in Essex for it. Has anyone found different to this? Also, what's the waiting time for Moorfields? I've been told locally I could have it done basically a week from ordering...

My mum is concerned with me getting it done locally and wants to me look at Moorfields anyway, even when I'm paying. Do you recommend going for the best of the best as it were, or is it quite a simple procedure that shouldn't have any problems?

Recovery time... I've read various reports and it seems to vary, but how long have people taken off work? If it's going to be more than a week or two I need to get prior consent from my bosses (although there won't actually be a problem with that)

Would you recommend getting the better eye or worse eye done first? According to my scan, my right eye is progression faster, so I'd be inclined to 'stop' that one first.

I have several things coming up this summer which have already been booked and paid for... a track day, a wedding, a festival and a holiday. All of this is over by September, and I'm asking myself if I should just be going for CXL asap or waiting until all this is over. I don't know!?

Thanks for reading. Can't say I'm not a bit scared about all this...

Its really a decision you will need to make after considering the pro's and con's

are you currently wearing contact lens? if so depending on the type of lens you may need to leave the lens out for a few months for the cornea to de-mould.

There's obviously benefits to having CXL however there are some risks - no one knows for sure the long term effects CXL has consdering it hasnt been around for that long.

KC affects us differently and it progesses different - you may not have any changes in the next 5 years or it could become progressively worst.

I considered CXL but its not practical for me, i wouldnt be able to leave my contacts out for 3 months whilst de-moulding takes effect. Alsomy right eye has changed much in the past 3 years - i have had the same prescription since then.

CXL is by my thinking a bit of a "no brainer" for even mildly progressing KC. There are very little side effects and the stabilisation of the cornea post treatment is, in all cases I have seen in my practice, superb.
Now available in most NHS establishments thanks to NICE.
Best
David

CXL has ben around for at least ten years now and from the studies that I have seen following up these early trials is that where it has been done with the epithelium off (the way NICE has accepted the treatment) that there has been no further KC progression.

If it's going to be more than a week or two I need to get prior consent from my bosses (although there won't actually be a problem with that)

Why do you need consent from your bosses? This isn't cosmetic surgery, it has the potential to mean that you take less days off work long term for routine hospital appointments for contact lens checks and less time off if you are one of the minority that progresses to the point of needing a graft.

You have a duty to notify your employers of any medical problems so that they can fulfil their diuty of care and make reasonable adjustments which would include allowing time off for hospital appointments which most ask if possible can these be done at the start or end of the working day to cause least disruption and so that if you are off for a long period, your work can be covered if necessary. This is very different to asking for consent. Repeated conrtact lens appointments long term can be more disruptive if your KC is progressive, for some it stabilise for long periods before progressing at various speeds and stabilising, KC is so varied between all of us. A graft is far more disrupting as it seems the norm for people to be off wrk for three months or so before going back to work gradually and is disrupting for 12 months or more now.

Maybe consent was the wrong word! All I meant was that because there's only me and one other person that do my job, I have to make sure it doesn't conflict with the other person being off at the same time etc. I've already printed out all the information sheets from here and given them to my bosses... we had a chat about it and they're very understanding. I actually work at a hospital, literally opposite the eye clinic, so getting to appointments etc. isn't an issue, only takes me a few seconds to get there!

I will chat to them again soon about CXL, what's the average time frame for time off needed would you say? Week, month, more...

Hi I'm pretty sure I'll be having this on my right eye in July now.

I just have one more question I've been wondering about. How soon after CXL will I be able to go for an eye test to see the difference in my new prescription? Basically I have a holiday coming up and I'd love to be able to get myself a new pair of glasses as it's unlikely I'll recover in time to wear my contact unfortunately. Bad timing I know!

I know I'm not getting many replies here lol but just one more question!

When it's said that some people actually see a slight improvement after CXL, is that in prescription or can it actually be seen with values in a CT scan? I'm not completely sure how one relates to the other...

Also, just to mention, I'm now booked in for this Friday! Bit worried but I'm sure that's normal I was trying to get funding from CCG but everything takes so damn long I've had to just go ahead and pull the trigger as I can't wait around forever.

All the very best for Friday. And Dan Gore's article in one of our recent newsletters on the home page of this website http://www.keratoconus-group.org.uk/new ... g_2013.pdf
gives some results from CXL
Anne

I had crosslinking done on my worse eye about 2 years ago. I recently had my scan and it showed that the progression had stopped. my optician was very impressed! I took a week off work after the op and was back to normal the following week. my glasses prescription obviously changed until my eye stabilised about 6 months later

regarding the price, i paid £1500 and was treated by Dr Srinivasan http://www.ayrshireeyeclinic.com/

cheers
Dan

Thanks... same price way down here in Essex.

I'm liking this 'just one more question' malarkey, and here's today's! How soon after CXL were you able to resume driving? I drive to work every day but I can if needed, get the bus...