keratoconus and crosslinking

[VorpalSword]

Does anyone have any experience with this? Reading the patient information it says the procedure doesn’t hurt but it can hurt afterwards and you are given significant painkillers.

Would love to hear some first hand experiences.

My son had this done and I'm afraid to say it was extremely painful for him afterwards. He was given some anesthetic drops to use but we had to phone the hospital and ask for more as he was only given enough for one day. On the second day the pain started to ease. I would make sure you ask them for the drops, enough to cover at least 48 hours if they will do that. He took regular painkillers as well. Although not a pleasant experience it needed doing to prevent further problems.

Thanks @steppingcarefully did he need it in both eyes? Sorry to hear your son was in such pain. Is it light sensitive? I’m wondering if there is anything we can buy beforehand that might help - nice eye mask / dark glasses.

My 13 year old ds had this on both eyes 10 days ago.
It was painful but not beyond what he could cope with. The hospital gave us painkilling eye drops which he used half of and a single use pack of something more hardcore which he didn’t need to use.
If you look in the keratoconus support group on Facebook you will see variation from people who say it’s excruciating, worse than childbirth to people who say it’s minor discomfort like having an eyelash in your eye. I think my son’s experience was probably slightly better than average.

The light sensitivity went on for a few days and he spent the first day asleep and the second day under the duvet listening to audiobooks, which was pretty much what another mum described with her 11yo.

He only had one eye done and yes he was very light sensitive so wore dark glasses indoors for a couple of days until the pain subsided.

I've had one of my eyes cross linked twice. There is no pain during but it is correct that it is painful afterwards once the local anaesthetic drops begin to wear off. The first night was the worst for me but bearable with the anaesthetic drops and (you are advised to use them as minimally as possible as it can interfere with healing) and painkillers. They prescribed dihydrocodeine, which I used for the first two days as paracetamol wasn't going to cut it. Start on painkillers before the pain starts and keep on top of them and it will be bearable. The pain for me was gone after a couple of days both times and I was a bit light sensitive and I would advise sunglasses if outside and it is windy to shield the eyes.
The bizarre thing was that after the procedure I could see without my glasses (and I might have got a bit excited they had fixed my eyesight) but unfortunately that was short lived 😂.

Hi

Did he have both eyes done at once? My son doesn't "need" to see clearly (no driving etc) so wondered if together might be better to just get it over with.

Really interesting hearing everyone's stories as it is something I has never heard off before.

Yes both at once.
He only has useful vision in one and is going to need a corneal graft in the other but the surgeon wanted to do the bad one as well because it can end up improving vision slightly and it actually makes it easier to do the graft.

I get the impression with children if they do one and it is quite painful it can be hard for everyone involved to bring themselves to have the other one done.

NC'd for this as outing.

I had this done 2 years ago. Needed both eyes done and they were done at different times a few weeks apart.

During the procedure no pain at all, logs of anaesthetic in eye. Afterwards I was sent home with park relief, eye drops and other medication. It was definitely uncomfortable/at times sore for the fist couple of days. I had to sleep with an eye patch to ensure I did not run my eyes. I needed a few days of work each time as my eyesight was too blurry to use a computer but I think I was unlucky and it definitely depends on your job too.

However so worth it!

2 years on my prescription had completely stabilised. Previously I needed new glasses twice or even three times per year and my eyes were changing rapidly.

Defiantly recommend it

Good luck!

I begged my surgeon to do both eyes at one time but he refused.
So worth asking

Surgery done yesterday. Very sore today, he is struggling to open his eye enough for me to get the drops in. Surgeon said it will only be painful for the first day so fingers crossed it stops hurting soon.

Good luck, I hope the pain lessens soon.