Day 3 CXL

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krolen
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Keratoconus: Yes, I have KC
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Day 3 CXL

Postby krolen » Fri 25 May 2012 11:02 am

Hi all, just a quick update it is day 3 now after my cross linking and i can just about manage to open my eyes again. I can basically see nothing out of my left eye (the cross linked one). I still have the bandage contact lens in.. My eye stings quite a bit. Has anyone else had similar experience with cxl? when did your vision start to return?

I feel really sensitive to light.. Even looking at the computer screen seams hard work (I'm using sunglasses)..

I was supposed to have the laser prior to my cxl. my surgeon decided that my eye was not suitable for it as the bulge was right in the middle of my cornea. Has anyone else been told this too?

due to have the bandage off on tuesday, Hopefully my eye will feel less irritated after this..

Has anyone tried any sprays for the eyes? are there any suitable for after cxl? i would think they are easier than drops. altho mum is doing them for me!

Hope we are all ok there in KC land today.

Krolen

HelenB
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Re: Day 3 CXL

Postby HelenB » Fri 25 May 2012 5:55 pm

Hello i had cross linking a month ago. My eye stung alot, but by the 3rd or 4th day mine had stopped. i alsoo found light painful, but i found natural light less painful, but our house was in the dark for ages, and i did have to wear sunglasses for quite a while. The bandage lens makes your vision blury, but mine came out 5 days before it was due to be taken out.
i found it hard to put the drops in so my mum put them in for me for the first week, but then it got easier :D
Maddie :D

krolen
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Keratoconus: Yes, I have KC
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Re: Day 3 CXL

Postby krolen » Fri 25 May 2012 6:33 pm

Thanks Maddie thats quite reassuring.. how is your vision now?

epik
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Re: Day 3 CXL

Postby epik » Sat 26 May 2012 2:37 pm

Hi krolen,

You are in the same situation as i was one month ago... So, as everyone in this forum, i can share with you the same feelings...

It is difficult, but try not to think of or to test the crosslinked eye, you will recover soon... Just keep the eye clean, do not touch or wash it and for 10 days always put a protector (sterilized) cap before sleeping. Keep in mind that the most serious complications after cxl are due to infections of the cornea.

The recovery of the vision is very-very slow and we need almost 6 to 8 months for total recovery and best results.

Ask your surgeon to give you the images of the topography (sagittal curvature, width, etc. ) before the treatment, so as you can follow up the evolution (one month later, three months, one year, etc).

If you want, you can share them with us.

Be optimist, be happy.

Regards

epik

krolen
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Joined: Tue 14 Feb 2012 8:15 pm
Keratoconus: Yes, I have KC
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Re: Day 3 CXL

Postby krolen » Sat 26 May 2012 2:43 pm

thanks epic, great advice as always. I have to decide on timeframe to look at having the other eye sorted now. At least i know what to expect. Im really glad you are healing well. -)

Chris_J
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Re: Day 3 CXL

Postby Chris_J » Sat 26 May 2012 3:13 pm

Hi Krolen,

Good to hear things are going well for you. How you getting on now?

I'm due to have it done at the end of June in my left eye and I was wondering how you got on the first couple of days after it? Did you have any pain at all. When discussing it I was told I'd be given a selection of drops and tablets and to just take them as now as not the time to be brave!! He did say though if I took all the drops and tablets I'd not have any (or very little) pain.

Cheers

Chris

krolen
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Keratoconus: Yes, I have KC
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Re: Day 3 CXL

Postby krolen » Sat 26 May 2012 3:34 pm

Hi Chris, totally honest the first night was very uncomfortable. They gave me drops to take every hour i was awake and some pain killers. i felt like i wanted to sleep. The second day was not too bad. I continued with the drops even hour until i went back for the 24 hour follow up. They said all looked good and there was no sigh of infection or dirt in the contact lens. He said i could expect a second lot of pain 8 hours later. Sure enough that came and it was just as uncomfortable as the first. Very strange sensation. I spent the following day completely in the dark and with my eyes closed. I felt like i could just not open either of them. even dim lights seamed to dazzle me. they told me to reduce the steroid drops to every 4 hours. witch i did. the day after that i can tell it has been done and it is strange one eye being ok and the other a complete blur. I can make out shapes and colours but no detail. I stopped taking the pain killers today. My eye feels irritated and a little uncomfy but nothing that is unmanageable. I think picking a week like this one was just my look! Hotest and most bright!.. I have been sleeping in my sunglasses just incase i rubbed my eyes in my sleep. Small steps it would seam. Its just very danting when you have it done and your vision is worse. its great having this website with other people who have had it done and can tell you what to expect.

What is your vision like at the moment? do you use contacts? glasses?
krolen

Chris_J
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Re: Day 3 CXL

Postby Chris_J » Sat 26 May 2012 7:41 pm

Hi Krolen,

Cheers for the reply; I seem to be worrying more about doing it since I decided to go ahead with it! Interestingly one difference you have to me is that the person I am seeing has said he doesn't bother with the bandage contact lens. Good idea about sleeping in glasses though - I think I might do that myself.

I know what you mean about it being strange about being able to see out of one eye and a blur in the other (I'll explain that one in a sec!). So all in all it sounds like whilst it's not been great it's not been terrible?

I wear RGP's (Have done since I was about 14 so 20 years now). My right eye has been stable for about 8 years now, but my left eye recently started getting worse again after a period of being stable (Good old KC). My deciding that CXL might be a good idea was at christmas when I had a problem with my left eye because it went dry, changed shape and my lens rubbed it pretty bad. I ended up with more drops that I could count for that. Anyway I couldn't wear my lens for over a week and as I have next to no vision in my left eye (I can't see the board yet alone the letters on it!) I can sympathise with the whole good vision / blur thing! However with my lenses vision is very good, but I'm running out of the Rose K2 lenses for my left eye and its the sclerial (or however you spell it after that!)

I was pretty borderline to be honest to have it done as I'm only just over the 400 micron cut off and the person doing it did say he would like to confirm it is still progressing, but being so marginal so waiting would not be a great idea and the evidence that my eye has changed recently he decided to go ahead. My work have actually surprised me a lot this week by saying they would help a bit towards the cost (I didn't ask or anything) which I thought was nice!

How about yourself with vision / glasses etc?

I'd be interested to know how you're getting on over the next few days if you feel up to it / don't mind.

Cheers

Chris

krolen
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Keratoconus: Yes, I have KC
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Re: Day 3 CXL

Postby krolen » Sat 26 May 2012 8:03 pm

Yo chris, I know what you mean about worrying. I was really bad before hand. I think you are further down the line than I am. my biggest problem is the halos and streaking of lights etc. other than that i could manage with glasses. I opted for accuvison as they were one of the only people who offerd laser treatments and not just cxl. Sadly tho due to the shape of my eye the laser would not have made a differece. they said it will however improve my other eye. I know the condition is almost guaranteed to go to the other eye so as soon as i can manage with the vision in my left, i will have the right done. They were very good at accuvison (other than the whole not suitable for laser that was only decided on surgery day.. (id kinda got my hopes up for that).. they say that they should be able to nock about 2-3 off my prescription in my right eye with the laser when i have that done... I really wish my work would help with the cost. fortunately they have been good with me having the time off at least..

one good thing i would say for acuvison is part of their price includes special contact lenses to me made for me.. they tell me this will help with the halos? i have only tried hard lenses once and could really not take to them in my left eye..

strangely enough in terms of prescription my left eye (the one i just had the cross linking on) was a lower prescription than the right..

anyway i will be sure to keep you posted.. Hopefully it should be much more comfy after the bandage contact lens has come out on tuesday..

krolen

Chris_J
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Keratoconus: Yes, I have KC
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Re: Day 3 CXL

Postby Chris_J » Sat 26 May 2012 8:32 pm

Hey Krolen,

I get halo's with my current lenses to be honest, but it's never been that much that I've moaned about it, although it has been harder driving at night recently so was thinking of bringing it up at my next check up (Of which I assume I shall be having a few in the near future!!). I do know of lenses that have helped that although I don't know about them (Anyone else reading this able to comment?).

I always like to joke (not that the strength really matters but) that the hubble telescope is probably jealous of my -25 strength lens!

It sounds like you've had it done quite early in to it which should save you a lot of hassle later on, or at least peace of mind. I wish I could have had it done years ago really but then I'd never heard about it until coming on this forum!

It took me a while to get used to my lenses (I went straight to RGP's from glasses) and at first it felt like a brick in my eye. I think it took several weeks in the end. Interesting I had a new left lens recently (for the problem at christmas) and that was a new type of material to my old left one and I can hardly feel this lens. Couple of other things that have mentioned to me, and other people have tried, is piggy backing whereby you have a soft lens and then hard lens on top which cushions your eye a bit, but I'm told there are pros and cons with that one such as getting the hard lens in place and reduced oxygen to the eye, but I guess if it works it's better than not having anything!

Cheers for keeping me posted - so far it's made me feel a bit better about it all roll on June 29th I guess!

Chris


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