Can't decide if I should get Cross Linking. Advice?!?

[Pauly]

I am scheduled for epi on cxl in a little under 3 weeks and I am terrified. My doctor does both epi on and epi off and recommends epi on. Is it worth doing epi on? And my main concern is I have read many people who have actually had worse vision even a year later then they had before. My right eye is basically blind uncorrected and my left is what I am seeing out of but it still gives me halos and some double vision which I have noticed got worse the last few months. I am 34 right now. Would you guys risk it? If my good eye gets messed up i would be screwewd:(

[CrippsCorner]

Look around my other posts in threads recently, I had the same worries; I went for it in the end. Are you in the US? Just going by your flag and wondering why epi-on has been recommended... my consultant is against epi-on and the NICE research backs up that there isn't enough evidence to say it's worthwhile or safe to go for within the NHS: http:/nice.org.uk/guidance/ipg466/informationforpublic

Also, with epi-on, it may have to be repeated in the future. Personally that didn't sound like a good option to me, especially when it costs £1,500 a go!

[kieran19685]

Its the same for me - 29 years old and wondering whether to get CXL. Coping well with Contacts fairly comfortable - not sure what to do next

[Pauly]

Yes I am from the US and my doc does both epi on and off and thinks epi on is better. I know others probably don't agree but I guess I would rather go that route. Plus.he said if it didn't work he would do it again for free. Tough decision.

[Stace234]

Hey

I had epi off just over a year ago and was also terrified beforehand!!!

Going in the second time was worse than the first, and to be quite honest it hurt a lot after for 3 days, all of which were very blurry! However it does get better. My condition was worsening at an astounding rate and CXL seems to have halted most of the progression. My right eye is pretty useless and the left isn't much better, I can't say my eye sight improved but it certainly didn't get worse and hasn't since.

I would go for it if I were you. It is scary and a very strange experience, and sore for a while after but for me, it was so worth it.

Good luck
Xx

[Pauly]

Thanks for the replies everyone. I am scheduled for epi on cxl in 2 weeks but am still having second thoughts. I am not worried about pain or any of that. My worries are I have read people who have had lost lines of vision from CXL. I only have one decent eye and If I lost a line or 2 of vision in it I would be screwed but I also don't want it to get worse either. Right now with glasses I am 20/30 in my left and 20/70 in my right, I do however have major halos and some double vision. I have never tried hard contacts but my doc thinks he can get me 20/20 with them. Not sure if I should just get the contacts and wait it out or cross link. Really nervous!!

[CrippsCorner]

I'm sure no one's going to tell you what to do, but I was in your situation and I went for it. I was having second thoughts up until I was actually laying on the operation table... I think that's normal buddy. I personally haven't read many cases of people losing lines from CXL, especially not permanently, could you link me to some sources?

Epi on Vs off... my consultant says the people he knows who do off, they end up scratching the epithelium anyway, thus it repairs itself over time, so you might as well just take it off to start with. It's been one week for me on my better eye now and I went out for the first time on my own yesterday (just a walk around the block) and for the first time I was able to read the time (on a big digital display) with my cross linked eye. It's getting there!

[kieran19685]

For me it depends, it isnt as easy as saying go for its a no brainer, there are many things to consider.

How old are you? Are you wearing contacts already? Is the condition getting worst etc?, will you be allowed time off?

I know its relatively safe procedure but does anybody know the long term affects of aging your eyes by 20 years?

surely if it isnt progressing then why risk it? Thats my opinion, my eyes havent got worst in 2 years hence why i am putting it off!

There are some risks see CrippsCorners recent post ?

Thanks

[Pauly]

I am 34 years old and have never tried hard contacts yet.

[CrippsCorner]

I'm sorry you're right on the boarder. My consultant said if you're under 30 100% get cross-linked, and if you're under 35 98% do it. I know that's only his opinion but it still helped to make my decision.

Are you having regular scans to show progression? That was more evidence that I needed, and I got it.