CXL Recovery

[Perkz]

Hi all,

Just joined here.

Have personally just had CXL on Wednesday this week. So I am into about 30 hours after the procedure now.

Most if not all the pain has subsided now however the eye is still somewhat sensitive to light.

Just want to reassure people that the 12-24 hours is the worst part with the pain, but the best thing you can perhaps do is just lie down as you'll naturally want to close your eye(s) anyway.

I have had this procedure done privately after a referral from the doctor I was seeing at the local NHS hospital. (Whether this referral is needed I am unsure. Since the consult is private and you just hand of the £££)
From initial consult with the private surgeon to the operation has only been about 2 weeks.

So for anyone who has been offered CXL or are booked in for it, if you have any questions about what happens (aside from the info your surgeon will give you) feel free to PM me.

Anyway just thought I'd join up and share my experience and am curious to hear others and their post-operative experience (any improvements etc).

Regards

Sean

[Anne Klepacz]

Hello Sean and welcome to the forum!
Thank you for sharing your experience here. I hope all goes well in the coming weeks - do give us progress reports when you can.
All the best
Anne

[Andrew MacLean]

Sean

Welcome to the forum and thank you for your positive report.

Andrew

[Nate]

Hey Sean,

Thanks for your post. Im from Australia and am looking at having crosslinking but am fairly anxious about having it done. How are you coping now a few days after the procedure? Can you see ok? any better than before? Im a bit worried about corneal scarring. Im new to this forum also and are just starting to see the effects keratoconus is having on my vision after being diagnosed a few years ago. What were the first visual signs of keratoconus for you?

Kind Regards,

Nate.

[Perkz]

Hi Nate,

This is going to be quite a long post - but I figure some people may find some information useful, or stuff that they can relate to,

Funnily enough I was diagnosed with Kerataconus a couple of years ago when I was living in Townsville.
Since then I've moved back to the UK and luckily for me, the treatment I've had has been excellent.

I had glasses I guess from ~12 years old or so, for reading.
Then over time, gradually, the board become harder to read at school, through into Uni, public speaking was also quite difficult as I couldn't read the paper properly without shoving it in my face, (Then i'd of course lose marks for no eye contact and such).

I then had an eye check up around age 18 and went through the motions of the eye exams, except nothing really worked to improve the vision, so the optician suggested I had may have "Kerataconus" and sent me off to an opthamologist for the orb scan.

Over the next year or so, had limited success with contact lenses - and didn't really bother with them too much. Driving was difficult at night, but manageable. I basically ignored the condition if you like, or didn't follow up on it too much, since I could manage.

Upon returning to the Uk (18 months ago) I went to the GP got my referral to the hospital & started again with my orb scans. I was then sent to get contact lenses where I had some form of success (Got a pair that fit for a while, perfect vision.)

Around October this year I had a follow up scan ~9months later and my eyes were showing clear signs of progression. I was told I'd make a good candidate for Cross Linking, however this wasn't possible at my local hospital under the NHS. I was referred to a surgeon in London, privately. Since then it's only taken about a month since being at the NHS hospital, to having my 1st eye done.

Anyway that's the time-line of events, may or may not be useful to you, or if you can relate to it in anyway.

Timeline

Day 1: Hurts like hell, however I used no Anaesthetic Drops since I just left the surgical eye patch on until I went to bed, even then I found them to only last about 10minutes anyway. It will be extremely sensitive to light so if it's anaethatised bare that in mind for when it runs out...

Day 2: Was still sore, but was able to sleep the previous night with painkillers + a sleeping tablet prescribed to me. Towards the evening the pain was significantly less than before. I still tried to keep it covered from light with a make-shift eyepatch.

Day 3: All pain basically gone, now it starts to itch a bit, feels dry & like there is something in your eye when there isn't. This is probably more annoying than the pain, haha. I felt ok though to visit some family friends for dinner was just irritating really, (still somewhat sensitive to light).

Day 4; Onwards, was able to leave my dodgy eyepatch off now, light wasn't so bad, could sit and watch tv or go on the computer using my glasses and my other eye. keep up the plethora of drops but it basically feels ok now.

Day 5 - present(Day 8.) No irritation at all over the days, vision slowly starting to return. Had my follow up with the surgeon today who was pleased with the manner in which it is healing. Will have a follow up appointment in 1 month's time to make sure it is fully healed - then it will be time to book the other eye in.

As for the procedure itself, it shouldn't be feared too much. If you get to the cross-linking stage it's likely you've had contact lenses and the like and should be used to people prodding your eyes by now.

As for my eyesight now. Until the skin grows back properly there isn't anyway to tell - I guess that will be in about a months time. However typically, I think in previous cases any eyesight improvement has taken almost a year. But you must remember this isn't the goal of the operation, it's to prevent your eyesight from further deteriorating (Which if the orb scans show as progressing, it most likely will.)

So hopefully, if all goes well, ill have both eyes done and healed by around March, and then the opticians get to have fun fitting contact lenses again (yay). With a bit of luck it'll be successful and I can get on with my life and back to driving.

Probably a bit long winded - but some of this info might be of some use.

Good luck

Sean

[Andrew MacLean]

Sean

Thank you for a very full post, I'm sure many will find it very useful.

[Nate]

Thanks so much for your post Perkz,

It was extremely helpful. How are you doing now? Are you in the process of having the second eye done? did the doctor mention Kerarings or Intacs followed by crosslinking? Thats what my surgeon is reommending for me. Ill still need glasses/contacts but it should be a vast improvement. What was your vision like before you ad the op? Mine has always been perfect but now im losing detail and I find that writing blurs andquite a bit of double vision. It is driving me absolutely crazy! Im really worried about the downtime because I recently bought a house and cant afford to lose my job because of the repayments. This disease is crippling! Thanks again for your reply. id love to hear how you are going.

Nate.

[Lizb]

having had both intacs and crosslinking, i can say that the recovery time from intacs is slightly longer (signed off for two weeks following procedure), whereas i was only signed off for 1 week post crosslinking. After intacs the pain and recovery time was a lot worse, not able to open eye properly or for any length of time for about week due to light sensitivity and pain (24-36 houurs post CXL) but this was managed by paracetomol and resting my eyes in the main. It was around 2 weeks before i drove again after intacs, about 1 week after cxl. However I have one very good eye and one bad eye (which had both intacs and cxl done)

[Perkz]

Just updating this now.

Had my second eye done yesterday, so into the evening of Day 2 recovery now.

This time was a LOT less painful and I believe that's down to 1 very small change. After surgery my eye was taped then the surgical patch put on, I believe this cut down a lot on obviously blinking and lots of lid sensation, thus reducing the pain significantly. When I had my initial eye done, I just had my eye closed then the surgical patch put on it directly, so if I wasn't sleeping this was extremely painful due to the lids being able to move (despite my best intentions)

So a top tip try getting your eye taped shut after surgery, as for those first 12 hours it'll make all the difference. Also attempt a sleep as well to waste a few hours (I was able to watch the second half of Arsenal and Barcelona last night, haha).

I currently have my eye open and exposed, just with my computer monitor brightness turned right down so will see how that goes over the next hour or so. Instead of a week later appointment I have to go to London tomorrow as my surgeon will not be here next week - so I guess I will be wearing my sunglasses, haha.

As for my first eye, it has improved a LOT over 1 month, I can't remember the technical specs, but he was rather impressed with the improvement, although technical aspects aside here is a quote from my report.

In fact his keratometry readings look much improved. His cornea is clear. Anterior segment is quiet and he has clear ocular media, quiet vitreous and healthy looking
retina.

So according to him, it is unusual for it the improvement to be so rapid, however if it was going to happen, someone of my age suit the requirements to do so. I think he said I could expect an exponential gain, so with it improving so much after 1 month, the results after 1 year look promising.

As for the intacts/keraring things, they've never been recommended to me, this I guess is because I can achieve near perfect vision with contact lenses & should the CXL work in halting the progression, I should be able to find a comfortable, fitting pair. I expect the lens fitting process to start in around 5 weeks time, then hopefully a few weeks after that, I'll have a pair and can get back on with my life (driving etc).

So it's a long old process, but there is light at the end of the tunnel (and a lot on the way in the case of CXL, lol) hope some of this is somewhat useful to any of you.

Sean

[itansey]

hi sean, great to hear everything went well. One question, how is the cornea layer taken off before the B2 drops are applied, is the cornea scrapped off or is something else done to remove it.

cheers,