UK Keratoconus Self-Help and Support Association

Hi
My son Phillip who is 20 and diagnosed about 6 years ago with KC. He is due to have cross linking done on his left eye (worst one) on Thursday this week. He is having it done on the NHS at St Pauls Eye Hospital in Liverpool.

I have to say he is being incredibly brave becaused stupidly went on You Tube and then realised that maybe it hadn't been a good idea to see what may happen!

I am feeling quite concerned not knowing what to expect and would welcome any comments from those that have had this procedure.

I will endeavour to give a day to day update on his recovery. Hopefully it will have the desired effect ie slow the progression and with a bit of luck from what I have read maybe give him a bit more vision back.
Regards
Eileen

Hi Eileen

Generally, there is some pain the first night but this is handled with analgesics. There is no sensation during the procedure, as the eye is anaesthetised. Despite it looking a little dramatic in videos, in fact the whole thing is fairly uneventful - just goes on a long time with the drops being applied frequently for half an hour before UV light is switched on and continued for another half hour.

Afterwards, vision can fluctuate up and down as the cornea changes shape slightly from day to day. This tends to be most marked in the first week. The length of time this goes on for depends on the individual.

Any overall improvement is gradual and tends to take much longer to show up and can continue for up to 2 years or even more.

Best of luck on Thursday!

Lynn

i'm 24 and had this procedure last may

the procedure itself was uneventful, however the following 24 - 48 hours after were quite painful for me, having not had many hospital procedures in my lifetime it was easily the most pain i've had to endure, even with all the drops and painkillers it felt like my eye was on fire (i did have a scar removed at the same time as this procedure mind)

this eased up after a few days and then aside from all the drops you have to put in daily and the fact you could now only see properly out of one eye for 3+months it was fine

the profile of my cornea has improved i believe and the scar removal helped lens wear time. So far im happy i had it and if it stops further progression even better!

Hi
Just to keep everyone up to date. Hospital phoned at 11.30 am Thursday to cancel procedure. What a rollercoaster of emotions. Phillip now says he is about to tell them all where to go and feels like never going back to hospital. Its going to be a battle over the next week to try and keep him calm.

Hopefully will be able to get him to the hospital as they said it would be same time next Thursday.
Eileen

I'd be really interested to hear how your son gets on as my son is 16 and is being referred for the same procedure.

All the best for tomorrow.
The procedure is not overly traumatic. The worst part is lying on your back for 45 minutes.
I have been involved in managing patients for Cross Linking for the last 5 years and have yet to see patients getting overly agitated during the treatments.
Best of luck and keep us all informed.

Nick Dash Optometrist

Thanks Nick. Think thats going to be the hardest part for Phillip cos he never sits still for very long. He also has a profound fear of needles although have told him that there probably wont be any or at least any that he is aware of. Hopefully it won't be cancelled again cos not sure that he will go ahead with it after that point.

Will keep you all up to date with how things go

Regards
Eileen

Hi all,

I underwent cross-linking on 26th of January. Despite surgeon's promises, vision acuity now is LESS than it was before the surgery!
Surgeon said he had never seen such a result. Having looked up over the internet, I've found some articles mentioning this kind of compication, but there was no information about the cause, just unclear phrases like "epithelium reconstruction".
I just wonder now if my vision returns to pre-surgery level and how much time can it take.
According to surgeon and my local doctor, there are no complications, epithelium is consistent and the eye is calm.
Here is vision acuity details:

BEFORE: 0.7 + sph -0.5 = 1.0 (autorefractometer: sph -0.5 cyl -0.5)
AFTER(10 days): 0.2 + aperture 1.5mm = 0.5 - 0.6 (autorefractometer: sph -3.0 cyl -2.25)

Feeling scared now because this is my best eye, the other one also has KC with stromal rings implanted (3rd Amsler degree, vision acuity ~ 0.1).
Please advise on the situation.

Thanks a lot in advance,
Andrey.

Hi All
Well procedure done this afternoon at St. Pauls Eye Unit Liverpool. Have to say that Phillip was extremely brave and didn't flinch one bit throughout the whole procedure. The worse part for him at that point was the having to lie completely still for so long and being hungry!!

Been home three hours and the pain has started to kick in. He is now lying in his room in complete darkness with sunglasses on. Luckily the lovely nurse that we had did warn us that this might happen so being prepared does help. Painkillers taken and aneasthetic eye drops in so hopefully will get a little relief from the pain.

He has a bandaged contact lens in but says this is quite uncomfortable. The eye is very bloodshot but having watched what happens have to say I am not in the least surprised. Now starts the four times daily with two lots of eye drops and he isn't very good at remembering rgardless of the fact that he is nearly 20!! Looks like Mum is going to have to remember to make sure he puts them in. Back at the out patients clinic next Friday (18 February) to get contact lens out and see that it is starting to heal

Will update as the week progresses

Regards
Eileen

Well just been for first check up and poor Phillip has a scratch on his cornea and has had to have another bandaged contact lens inserted and on strong antibiotic ointment. Back again on Monday to see if it healing.

He has been suffering with the eye burning for a couple of days and could hardly open it. We were being told that this was to be expected but now that we know what was causing the problem maybe should have pushed bit harder and gone back sooner

Hopefully the antibiotics will start to help and by Monday will be feeling better. He really is going stir crazy at the moment because he isn't feeling up to going out.

Regards
Eileen