Post CXL recovery

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Kyoto
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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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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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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
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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!

nightvision
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Re: Post CXL recovery

Postby nightvision » Sat 05 Jun 2021 11:02 pm

Hi Kyoto,

I'm in a similar situation to you, where I had cxl in my left eye and now 2 months after the procedure I see significantly worse than before. I´m getting very worried and wanted to ask you how did your eye evolve over time.

Kind Regards

Kyoto
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Re: Post CXL recovery

Postby Kyoto » Fri 24 Sep 2021 7:03 am

Hello Nightvision and all,

I’m really sorry for the delayed reply!

It’s difficult for me to say exactly when retrospectively, but I feel things started to stabilise a bit around the 6month mark. At my 1 year appointment I was told that my keratoconus was stable. At the time I had a few appointments trying to fit contact lenses in. Hybrid lenses simply didn’t help achieve good vision, and after trial and error I was given RGB lenses. I asked about sclerals but they told me that my vision was good enough that I would not qualify for sclerals. I believe my Best corrected vision was 6/5 on left and 6/9 on right. I tried on the hard contact lenses, and honestly speaking I felt that I could tolerate the pain better after the procedure. But the problem I then faced was that the contact lenses kept on falling out every 15-20 minutes. It’s like my eyes just simply dried up… really not sure why but I felt I couldn’t get on with life popping in my RGBs all the time so I begrudgingly decided to just use my glasses. I believe I have my second year appointment in November so I will tell them my experience then.

Looking back at things, I believe that overall my vision has stayed stable. But my ghosting overall has worsened and I have become slightly more myopic overtime. I believe it’s quite natural that there is some variation in vision on a dialy/weekly basis considering that our cornea are thinner. I believe this is really what makes this disorder difficult to manage psychologically because you really don’t know there the fluctuation is a normal phenomenon or whether there is a progression, or is that the cornea is continuing to flatten out with time…

How is everyone doing now after some time? It will be nice to know your experiences too.

Best wishes


Kyoto

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gsward
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Re: Post CXL recovery

Postby gsward » Fri 24 Sep 2021 9:36 am

A suggestion, when you go back again ask them to send you back to the waiting area for an hour and re-examine you. RGPs can fall out if dry, but I would expect you to have other symptoms of dry eyes if that was happening. It's possible your KC is stable but you have a significant irregular cornea already. That makes it a challenge to fit an KGP over the top. Any slight rubbing by your eyelids can push them out. That was the point when I needed to move onto sclerals. The other option might be "piggybacking" with a soft lens.

Kyoto
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Re: Post CXL recovery

Postby Kyoto » Thu 30 Sep 2021 8:10 pm

Many thanks for your input.

I agree with you, and that is my plan. They originally were very reluctant to prescribe me sclerals. I do feel that my night vision is now much worse with more glare. I personally feel this may be the time for me to move onto sclerals now. I really hope they understand this time… I really do not want to go private and pay an extortionate price…

How is your vision with sclerals? Does it felt with night vision? Does it help reduce glare? Did it take a long time for you to get used to it? How long throughout the day are you able to keep your sclerals in?

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gsward
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Re: Post CXL recovery

Postby gsward » Fri 01 Oct 2021 8:24 am

OK, here is my personal experience. I found the change to sclerals quite easy but I know some people find the insertion and removal a challenge early on. With an RGP lens you are trying to fit a regular hard lens in a 'lumpy' cornea. Sclerals are quite different: the lens bridges over the cornea from the sclera (white part of the eye). The gap between the lens and your irregular cornea is filled with saline. So once the optometrist gets the fit right the comfort is much better. I can wear mine for 14 hours a day if I need to although I might take them out for a clean during the day. Also with the saline in contact with your cornea rather than a hard lens it's good for dry eyes too.

I have negligible glare at night and overall I think the vision is better.

There are two things to consider. If RGPs aren't doing the job sclerals are possibly the next step and therefore should be provided by the NHS. You should not need to go private to get them. The other consideration is there are far fewer optometrists fitting scleral lenses. If your optom is not experienced with them or the hospital has limited resource it might be more of a challenge getting the prescribed.

Where are you being seen? At an eye department of a general hospital or a specialist eye hospital?


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