Post cxl and what to expect

[Jo dodds]

My daughter had cxl on both eyes following her diagnosis with KC in August 2011. Her eyes have settled well and so far she has experienced few problems- she was 12 when diagnosed and whilst we agonised as to whether to have cxl done, we are so pleased we did. For those thinking about it obviously each case is different and there are always pros and cons we are very comfortable that we made the right decision for her. My question is ; does cxl linking reduce the risk of hydrops developing, are there any warning signs and what should we look out for. She is due to go on a French exchange trip on her own in may and if there is any risk I need to make her aware of this. Thanks for the support this site provides- it has been a real help in the past!

[Claire Harrington]

Hi Jo

Thanks for the post and great to hear some positivity coming from cxl.

I don't hold a medical background so not sure on your question on hydrops - but hopefully someone on here will pick this bit up.

In terms of your doughter travelling abroad, unless the KC is something that effects her everyday, and its worth people knowing then I don't think its there is too much to worry about. The only thing to be aware of in travelling anywhere would be where are you going to if its a city and you normally live in the country be warey of the dusty climate and if travelling by plane or any transport where air con may be on the go for a period of time its worth thinking about what she might need in terms of eye drops, but apart from that I can't really think of much, oh and sun glasses of course! I have had cxl in my left eye and I am more light sensitive than I was prior to the treatment.

Out of interest, did you r daughters eyes take a while to settle, did she experience any significant changes in prescription good/bad after the surgery?

All the best

Claire

[Jo dodds]

Thanks for that- She is travelling by plane and will make sure she has some artificial tears in case she experiences dry eyes. Post cxl I think she was quite lucky, pain for 36 hours, but after that all was well. She is quite OCD re hygiene so although very young she made a good recovery. In the medium and longer term her eye sight settled well, no ghosting to speak of and within 6 months she experienced a slight improvement in her vision which has consolidated over time. This nov will be her 2 year anniversary for her right eye, left 2 months later, and I think the improvement will be 2 lines on the eye chart. Her vision is ok with glasses, better with RGP lenses- but she does struggle with them. I think we were lucky to catch it early and preserve her vision as best possible. She is a keen cricketer! And wants to study medicine so hopefully this will be possible pos cxl.

[Claire Harrington]

Hi Jo
That's great new, so good to hear such positive results and it sounds like she's not letting her KC get in the way which is absolutely the right attitude.
I wish her all the luck for her studies.
Claire

[Whiteshepherd]

I can only talk from my experience with cxl here in the US trials. My ectasia had gone to the point of about 20/200 vision on the Snellen chart. Sorry..don't know the charts yet for UK and Europe. The progression was seemingly stopped/slowed. It sounds like your daughter had done well after cxl. I would tell her to always make sure her eye pressure is at 14 or lower and her eyes should stabilize nicely. I wish hyou both all the best luck in the world. I know ectasia as well as KC is a never ending fear.

Brad