Post CXL recovery

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Kyoto
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Keratoconus: Yes, I have KC
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Post CXL recovery

Postby Kyoto » Mon 30 Mar 2020 10:47 am

Hello All,

I am new to this Keratoconus forum, and many thanks to everyone so far who have provided valuable advise and support to each other through this forum!

I have been diagnosed with Keratoconus since I was 25 years old, with my right eye being much worse than my left eye. As a child I suffered from asthma and hey fever, and my routine scratching of my eyes were most likely the culprit of my Keratoconus. I am now 29 years old. I was managing relatively okay with my left eye using glasses until about 2019 when the Keratoconus on the left eye deteriorated rapidly, and I was referred to Moorfields for my cross linking procedure. As my vision on my left eye was preserved, I had a standard epi off CXL, but on my right eye I had an additional PRK performed to improve my severe astigmatism.

Post op recovery was, at least for the first 48 hours, awful! But recovered gradually since then.

I am now 5 months into my recovery, and have so far had 2 clinic appointments at Moorfields. One was 1 week post op to take off the protective soft contact lens, and at 3 months to check how things are going topographically. My initial 1 week appointment went smoothly with no immediate complications. At my 3 month appointment I was told that my topographic images looked much better but had some mild corneal haze in both my eyes. I was told this should improve with time and my next appointment is in a year’s time. I have since changed the prescription of my glasses, and I must say, my vision on my right eye is far better now than what it was pre surgery, likely because of the PRK procedure. On the other hand, my left eye which I have been relying on, feels worse since the procedure. I am experiencing ghosting above and below, and overall, I feel I have become more short sighted than before. There seems to be some daily fluctuations, with worse vision once I wake up and at night. I am grateful that my right eye vision has improved markedly than before, but overall my right eye is still much weaker than my left eye, and therefore reduced vision in my dominant eye is causing an overall worsening in my vision.

I am no doubt grateful for having CXL done, as I am hoping this procedure has prevented further deterioration in my vision for years to come. But again, on a day to day basis, I get very stressed and frustrated by my ghosting and more myopic vision. I understand that they say it takes up to 12 months post CXL for your vision to stabilise and therefore I have to be patient!

The question I would like to raise to the community is

a) did you experience worsening ghosting of your vision post CXL, and if so, did they improve for you? If so, when did you see a recovery?
b) did you experience your eyes becoming more short sighted post CXL? Did this improve with time?
c) does sclerals help with the ghosting and short-sighted vision? I have tried normal RGBs before and they just did not work with me as it caused so much pain!
d) I was thinking of asking for sclerals at my next appointment 1 year post CXL at Moorfields. If you are referred for sclerals, how long does it take before getting them? I am aware this may take some time with fitting and postage.

Thank you all!

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Anne Klepacz
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Posts: 2089
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Post CXL recovery

Postby Anne Klepacz » Wed 01 Apr 2020 9:31 am

Hi Kyoto and welcome,
CXL came much too late for me, so I can't give you personal experience. But do have a look at the summary of the talk by Dan Gore at one of our meetings, which you'll find in the December 2019 newsletter https://www.keratoconus-group.org.uk/in ... wsletters/
And hopefully some of the forum users who have had CXL will join in this thread.

Andy cooper
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Joined: Fri 03 Apr 2020 7:26 pm
Keratoconus: Yes, I have KC
Vision: Other

Re: Post CXL recovery

Postby Andy cooper » Fri 03 Apr 2020 7:47 pm

Hi Kyoto

I recently have had cxl procedure done in both eyes. My right eye has always been advanced from a young age so I've always coped with just using my left eye as it was mild KC. After the procedure my vision was pretty blurry for a few weeks. I was in abit of a panic mode because I relied on the left eye only and now my vision felt alot worse than before. But thankfully my vision over time has returned and I'm glad I had the procedure done. It's coming up to 6 months since post OP and I still suffer from abit of ghosting but I generally feel normal again and if anything my vision has improved. The one thing I've learnt is everyone's recovery is different so give it time and hopefully things will work out for you. Hope this has helped you a little. Good luck with your recovery

Kyoto
Newbie
Newbie
Posts: 2
Joined: Mon 09 Mar 2020 7:53 am
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: Post CXL recovery

Postby Kyoto » Mon 06 Apr 2020 7:10 am

Thanks Anne and Andy for your input!
Mr Gore was actually the surgeon who performed my procedure so I trust his comments highly!
I am not saying that my vision has deteriorated significantly, and I must say that things are almost what it used to be pre CXL. It’s mainly the ghosting and to some degree, an inability to focus on things better with worsening myopia. I guess I need to wait patiently and see how things go! I will keep you all updated with the recovery as time passes, and hopefully I will have some positive comments!


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