Day 3 CXL

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

Postby krolen » Sat 26 May 2012 8:50 pm

you will be absolutely fine mate, honest it is a breeze.. i was really worried about not being able to blink.. when they put the clip on your eye, you blink normally but your left eye lid just dose not move. you feel like you have blinked.. it was a little boring and you have to keep still for for quite a while.. i really needed to scratch my nose.. other than that the procedure itself was easy peasy. i can't imagine life with a -25 prescription i have ilk -5 and i thought that was strong.. Maybe it is worth asking them about the laser? I'm guessing tho if your cornea is 400mm thick this may not be an option for you.. i was totally the same. this forum is such a great place to chat to other people with KC!

if you have any more questions feel free to get in contact. via man or email or pm or anything

krolen

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 » Tue 29 May 2012 4:31 pm

Hi all, Day 8. I have been back to the clinic today to have the bandage contact lens removed and have a check up. My eye feels much less irritated but a little dry. The drops seam to help with this. They said my epithelium is 95% healed and looking good. They said the other 5% was around the centre of my eye where the bulge was at its highest and that this was prob the contact lens rubbing as i was blinking. They have booked me back in for a follow up next friday. They said they will do topography again then and see how the procedure has gone. Apparently it takes at least two weeks for the cxl to complete fully. He said vision would start to slowly come back over the next two weeks and that my light sensitivity would decrease. He also said i could have copies of the topography from before and after the procedure. All looking good so far. Hope everyone is well out there.

Krolen

epik
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Re: Day 3 CXL

Postby epik » Tue 29 May 2012 6:30 pm

hi Krolen,

great to hear that everything is going better and better for you...

It takes more than 2 weeks for the cxl to give the final result. The collagen structure is changing, holding the layers more efficiently and this stabilization procedure lasts for several weeks. If you don't take specific risks in everyday's life (sun exposure, dutsy environment, rubbing eyes, infections) and if the min corneal thickness before cxl was greater than 360 microns, be sure that the cxl is definitely successful.

There is a clinical study of about 1.000 crosslinked patients, there were only 3 failures (2 corneas of about 330 microns and 1 case of a fisherman exposed to the sun for 8 hours per day, after cxl !!!).

cheers

epik

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

Postby Chris_J » Tue 29 May 2012 7:10 pm

Hi Krolen,

Sorry missed your other message. Thanks for you offer might take you up on that when I start needlessly worrying just before having it done.

I didn't actually know anything about a laser part of it till you mentioned it (I'd sort of seen it in various searches but not paid attention to it for some reason), but my cornea I suspect is way too thin for that given I'm only just borderline for having it done. However probably worth an ask - the worst they can say is no!!!

Glad things are going well for you mate, sounds like good progress has been made so far. Just out of interest at this point how sensitive to the light are you? Just realised I've been invited the evening do of a wedding a week after having the cxl done and it crosses (no pun intended!) my mind there are likely to be lots of flashy lights!

Cheers

Chris

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Lynn White
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Re: Day 3 CXL

Postby Lynn White » Tue 29 May 2012 8:15 pm

Hi All

I have followed many of my patients through cross linking so I will try and give as much help as I can.

First, CXL causes fluctuations in corneal shape and vision for at least 6 weeks and in some people up to several months more. This is not all to do with CXL - it is to do with previous contact lens wear combined with the effects of the procedure itself.

Initial effects can be disconcerting - sensitivity to light, haze, changing vision etc.This settles with time but how long is dependent on how long you have been keratoconic and previous contact lens wear.

Positive effects on vision can take many months longer and can be so gradual you really don't notice. I have now got to the point I am reminding my patients how badly they saw a year or two previously. CXL seems to improve ghosting and haloes over time. However, its really hard for people to remember how bad this was... they just get on with their lives.

Most of you with overwhelming issues in the first few days post CXL will be happily going about your business in a month's time. It all seems so much more worrying just after the op.

I just gave a lecture at a major UK contact lens exhibition (BCLA) about combining CXL with KeraSoft lenses. A patient came along to talk about his experiences. His main message was that he now can almost forget he has keratoconus. This goes for a lot of my post CXL patients. 3-4 years down the line, many can now see with glasses and some can progress to vision with disposable contact lenses.

The thing to hold on to is that improvement is NOT overnight but it is definitely there!

Lynn
Lynn White MSc FCOptom
Optometrist Contact Lens Fitter
Clinical Director, UltraVision

email: lynn.white@lwvc.co.uk

krolen
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Posts: 25
Joined: Tue 14 Feb 2012 8:15 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: Day 3 CXL

Postby krolen » Tue 29 May 2012 8:49 pm

Hi Chris, yeah no worries mate. The place that offers laser in uk is accuvison.. other than that i think its off to Greece for the athens protocol -) as i said the first few days were bad in terms or light sensitivity, I am writing this now with a soft contact lens in my not cxl eye and not being blinded by the light. I think recovery time is proberly down to you as an individual 1 week later i would now feel that i could attend a party or even dj at one (im a singer and dj in my spare time).. ill try and keep you posted as and when things change for me.

krolen
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Posts: 25
Joined: Tue 14 Feb 2012 8:15 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: Day 3 CXL

Postby krolen » Tue 29 May 2012 8:55 pm

Hi Lynn, thanks so much for your message, really nice to hear from a professional about these things.. sometimes you can get a little blinded with all the science of it all. I have acutually not tried RGPs or anything like that yet, it had not got to that stage before i decided to take action to prevent it getting worse. Reading on forums about people with much higher perscriptions than mine, i thought i would take the plunge for CXL. My biggest frustration is the halos and ghosting, streaking of lights etc. Is there any lens out there that is designed with this in mind? Its such a mind field in terms of lenses. I have maybe correctly or incorrectly looked at all sorts and to be honest my head is mashed with them all. I guess its going to be down to someone who knows what they are talking about to tell me what i need... Its so hard not to try and like test your vision each day too. also my eye thats been crosslinked seams to wander off to one side. presumably this is because it cant focus? I had a lasy eye opp when i was a baby... anyway thanks again for all your input. Big help -)

krolen

Chris_J
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Joined: Fri 03 Feb 2012 11:31 am
Keratoconus: Yes, I have KC
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Re: Day 3 CXL

Postby Chris_J » Tue 29 May 2012 9:17 pm

Hi Krolen,

Ah ok - I did actually see something on the Athens procedure but go disturbed watched the video by work and never went back to it.

Thanks again for the updates it's nice to see how someone is getting on. I know it's all very much individual but some idea is better than none!! In either case I hope I shall be up to a bit of partying a week after, but we shall see. I can always do the 'cool' thing of wearing sunglasses inside!!!

Lynn what you said was very interesting so thanks too from me for that info. Just one I wondered if you might expand on a bit more if you have time? You mentioned it depends on previous contact lens wear and I wondered how that does affect things? (I hope Krolen doesn't mind me asking in this thread, I certainly don't want to hijack it!)

Cheers

Chris

krolen
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Posts: 25
Joined: Tue 14 Feb 2012 8:15 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: Day 3 CXL

Postby krolen » Tue 29 May 2012 9:50 pm

ask away chris -)

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Lynn White
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Re: Day 3 CXL

Postby Lynn White » Sun 03 Jun 2012 8:01 am

Chris and Krolen,,,

First, it is essential to understand that it is very hard to offer advice via a forum simply because I have no idea of the past history of each case and it really needs access to your eyes to really say anything sensible.

However, I can give some general information.

Previous contact lens wear:
RGPs cause moulding of the cornea even for those who have normal eyes. This is well understood in the case of refractive surgery - surgeons ask that RGPs are left out for at least a month before surgery so they can measure the correct shape of the eye. The one factor that affects moulding in normals is number of years you have worn RGPs (Tsai et al 2004). The longer they are worn the longer it takes for the cornea to normalise. Soft lenses do mould the cornea slightly but nowhere to the same amount.

KC corneas are softer, patients HAVE to wear lenses to see (therefore wear as much as possible) and often its difficult to get a perfect fit so it is likely that they have even more impact on the corneal shape. If you have CXL more or less straight after removing rigid lenses, there are changes in corneal shape due to the combination of normalising after RGP removal and also the CXL itself. This leads to photo sensitivity, haloes, ghosting etc.

If you are not wearing contact lenses after CXL, then ghsoting and haloes are made worse by simply have uncorrected vision. If you do get into lenses, then the fact the prescription is changing will also produce residual ghosting/haloes due to the fact the prescription is not correct. This is generally worse at night because the pupil size is larger.

One of the issues with CXL being only available privately is that there is no general consensus on how patients should be managed pre and post CXL. Its all very much on a case by case basis.

I have done a lot of work on this - with the very valuable help of patients - to try and find out the best way to minimise the disruptive effect of having CXL and getting back into lenses.

As the cornea changes shape a lot post op, RGPs fit can go tight and flat, thus causing issues. Soft lenses can flex with corneal shape changes. Thus, I tend to get patients into soft lenses at about 1- 2 weeks post op on average whereas it takes a month or more to get safely back into RGPs. The eye tends to be dry after CXL as well, which can also make CL wear difficult.

All of this shows that actually, you can 't make judgements on ghosting and haloes until you have a stable proper contact lens prescription. I do fully understand the checking the eye each day scenario (I would do the same !) but please also remind your self that its is NOT the full story!

Lynn
Lynn White MSc FCOptom
Optometrist Contact Lens Fitter
Clinical Director, UltraVision

email: lynn.white@lwvc.co.uk


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