Urgent CXL advice needed please

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mz1984
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Keratoconus: Yes, I have KC
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Urgent CXL advice needed please

Postby mz1984 » Fri 02 Feb 2018 5:23 pm

I have a CXL booked this Tuesday on my right eye. I believe it is an epi-off procedure as the Dr told me their would be pain afterwards. However, after doing some research it seems with epi-on there is good results, perhaps even better than epi-off without the downside of removing some of the epithelium which causes pain and requires significant healing in addition to other possible draw backs such as haze. If I do an epi-on, there is no pain or healing required so that I could do both eyes and be back to normal pretty quickly - which would remove a lot of stress and inconvenience from my life.

As my corneas do not have any scarring I'm reluctant to do an epi-off initally. Does it not make sense for me to try epi-on first and then see after 6 months if the progression is halted before doing epi-off, which is a bit more invasive? If anyone has experience in this area your advice would be greatly appreciated.

Thanks

RedOnion
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Re: Urgent CXL advice needed please

Postby RedOnion » Sat 03 Feb 2018 10:22 am

I’d suggest discussing this with your specialist if you haven’t already. I had epi off in both eyes, and yes it does hurt for a couple of days after but the level of pain varies from person to person. In my case, the left eye was really sore while the right was nothing more than a niggling nuisance. Are you getting both eyes done at once?

I had no corneal scarring before the procedures and I’ve none now, with fully functioning vision (which has actually slightly improved). I’m being fitted with glasses and hybrid lenses to correct slight near sightedness in my left eye, which I had before the op, but other than that I’ve experienced no ill effects :)

mz1984
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Keratoconus: Yes, I have KC
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Re: Urgent CXL advice needed please

Postby mz1984 » Sat 03 Feb 2018 4:47 pm

Thanks for your reply. Glad to hear it went well for you and that you're doing well. I'm booked to do one eye first but I was thinking about doing both. It's a trade-off of potentially having pain once or having to deal with the same pain twice - but as you mentioned pain seems to vary between people.

The surgeon told me he wouldn't remove the epithelium but rather put may small holes into it. I haven't heard of this kind of procedure before as it seems to be a variation of the epi-off. However, it does some like epi-on has similar efficacy but its just not yet fda approved and so perhaps some Drs are less willing to do it as its not standard protocol.

Has anyone had good results on epi-on?

RedOnion
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Re: Urgent CXL advice needed please

Postby RedOnion » Sun 04 Feb 2018 4:34 pm

I had mine done separately too, which worked for me. It's really a judgement call at the end of the day. I haven't heard of that procedure either but sounds interesting!

Keep us updated with how it goes and trust it will go well for you!

mz1984
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Re: Urgent CXL advice needed please - updated

Postby mz1984 » Tue 13 Feb 2018 10:40 am

I had the CXL procedure 7 days ago on both eyes.

Thankfully there was no pain during the surgery or on the following days. Just a painless scratchy feeling and some dryness from the bandage contact lenses esp in the morning.

The first 3-4 days were very blurry and foggy, iI was really discouraging as I didn't see any day-to-day improvement. However, once the bandage lenses were removed, vision improved by 90% and most of the fogginess cleared up immediately.

I'm seeing daily improvements with light sensitivity and my visual acuity is almost back to its pre=op state. I recommend taking 2 weeks off work (for both eyes) if you can.

In hindsight it would have REALLY made a big difference if someone had told me that my eyes would be very blurry due to the bandage contact lenses. I was really worried. I thought this blurriness was in my eyes.

Once the lenses were removed, the Dr explained that the bandage lenses were holding dead tissue and fluids in place causing haziness and blurred vision. Knowing this before the surgery would have saved me from a lot of worry.

To anyone living with advanced KC and not using Scleral lenses I recommend trying them if you can. The various symptoms of KC actually converged to deteriorate my overall vision in a way that I didn't appreciate until trying on the lenses. I didn't realise what I was missing. It was like seeing everything again for the first time. I'm just a bit worried about the long-term practicality of using them once they arrive in a month.

Kris
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Re: Urgent CXL advice needed please

Postby Kris » Sat 17 Feb 2018 2:16 pm

Hi,

I have now had sclerals for a few years and I cannot recommend them enough, they have been a life saver. I used to wear RGPs but they irritated and dried my eyes out so much I had to use drops every 10 minutes, which was such a hindrance to normal life!

As for the practicality, for me they are like any other contact lens to be honest! They might require a little bit more care and time than other types, but my first pair has lasted 2 years now (until I accidentally broke one). They are really quite tough and have even survived a few falls..... It took a couple of months to get the best method for me for cleaning and inserting them down, but once I had it well practiced, it's not an issue at all anymore. Unless they find a way to improve my KC to the point I can wear soft lenses or similar again or come up with a miracle cure, I will be wearing sclerals for life and have no worries that I will be able to handle it with a bit of practice.

Good luck and hope it goes well!

mz1984
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Re: Urgent CXL advice needed please

Postby mz1984 » Thu 22 Feb 2018 6:08 pm

Thanks Kris, im looking forward to getting my lenses. Hopefully I'll get used to them, as someone who has never worn contacts of any kind, its bit of an adjustment - having to fiddle with my eyes every day is a bit scrary. I guess the benefits of having them are enough of a reason to persevere until it becomes second nature. But just trying them that first time at the fitting was a revelation. I'd forgotten the last time, if ever, that I could see that well.


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