CXL one eye or both?

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taffer87
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CXL one eye or both?

Postby taffer87 » Wed 10 Jan 2024 3:19 pm

Hi all

I have been diagnosed with Keratoconus since I was 24 and was in monitoring for a couple of years then and it didn't progress. Recently (nearly 12 years on) my optometrist referred me to an ophthalmologist again as my eye sight kept changing each year and now the ophthalmologist has recommended CXL in both eys (right eye as a must and left eye being more optional where he was more leaning on me to decide).

1. I wanted to check if you guys feel I should get it done in both eyes? He suggested doing it in both at the same time as then I will have to go through the pain only once and take time off etc for a week or so after only once.

I see pretty well with glasses right now. Prescription progression is as below. The ophthalmologist mentioned its slightly worse as off today than August 2023 reads by Sepcsavers.

May 2019
R SPH -3.25. CYL. -4.50, AXIS 60
L SPH -2.75. CYL. -2.50, AXIS 100

November 2021
R SPH -3.50. CYL. -4.25, AXIS 80
L SPH -2.75. CYL. -2.50, AXIS 100

August 2023
R SPH -4.50. CYL. -4.25, AXIS 80
L SPH -3.00. CYL. -3.00, AXIS 100


2. Also want to check if I should get this done on the NHS where apparently its a nurse led procedure and a specialist nurse does it or should I get BUPA (who I have private health insurance via my employer with) to cover it which will mean an ophthalmologist does the procedure.

3. I am not sure how the aftercare works in a private insurance funded environment.

4. Is it really very bad afterwards for a few days? Not sure how much time off work I will need - my work is very screen heavy and I sit in front of a laptop + two monitors all day in financial services.

Any advice will be really appreciated.

taffer87
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Re: CXL one eye or both?

Postby taffer87 » Wed 10 Jan 2024 8:30 pm

Also managed to find the readings from my initial diagnosis in 2012

Age 24 Male
Current spectacles Right - 3.75/-2.25 x 65 Left -4.25/-1.00 x 95.
Central corneal pachymetry measurement (micrometers): Right - 504, Left 522
Visual acuity Right- 6/12-1 Left 6/9.

taffer87
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Re: CXL one eye or both?

Postby taffer87 » Wed 10 Jan 2024 8:38 pm

and the latest from St Thomas Hospital appointment today (Consultant S Robbie):

Image

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Anne Klepacz
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Re: CXL one eye or both?

Postby Anne Klepacz » Sun 14 Jan 2024 12:04 pm

Hello Taffer,
I was hoping you'd get a reply from one or two people who had had CXL and used to post on this forum. CXL came too late for me, so I can only speak from talking to lots of KC people and reading lots of people's experiences on this forum in the past.
My personal view of one eye or both is, if it ain't broke, don't fix it (and I've had 3 grafts and 2 cataract ops so I do go for surgery when I need it!) The better eye seems to stay mild for a lot of people with KC which I guess is why your consultant is saying it's up to you whether to get that one done. But only you can make that decision.
Nurse led or not - the Moorfields CXL service has been nurse led for at least a decade and they get really good results. It's a straightforward procedure, so doesn't need surgical skills to carry out. I don't know what the follow up regime is privately. Moorfields continue to monitor patients for a number of years, and I imagine St Thomas' do the same.
Pain - people have different pain thresholds, but most people seem to find the first 24hrs pretty painful, though you will be given painkillers. For some, the pain continues for another day or so.
If your work is very screen heavy then I think you'd probably need 2 weeks off work. I don't know if you're on our mailing list for newsletters. Have a look at our Spring 2021 edition, which you'll find in the publications section on our home page. It includes a summary of a CXL special Zoom meeting we held for members, when people talked about their experiences.
All the best, whatever you decide.

RedOnion
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Re: CXL one eye or both?

Postby RedOnion » Sun 14 Jan 2024 12:54 pm

Hi Taffer,

Sorry I haven’t really been on the forum much of late.

I had CXL done in both eyes, however it was one eye at a time. This was on the advice of my consultant who advised the pain could be too much in one go, so I had the procedures three months apart. I’m lucky that I get significant sick pay benefits though! I was a bit like you in that one eye was a must and the other recommended. I had the worst done first and it was a long recovery however my good eye sorted itself really quick and with little pain.

I had mine done privately with the consultant doing the procedure and a nurse providing the immediate after care. All my follow ups were on the NHS.

As for how bad it is, everyone will have a different experience, but my left eye (worse eye) took a few weeks to get back to being remotely fine to see out of and I had a couple of days of pain, with it being quite intense in the hours after the drops wore off. My right eye experienced minimal pain and was functional after a few days. I was off for 12 weeks, six weeks per op, but this was partly due to having exposure to chemicals at work and my OHU were risk averse. I got paid for the time off at least!

I hope that answers some of your questions but happy to try and help further :)

taffer87
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Re: CXL one eye or both?

Postby taffer87 » Sun 14 Jan 2024 9:23 pm

Thank you so much for the input.

I think I will go for both eyes but will get a private consultation as a 2nd opinion and then see what that consultant says.. it seems like the CYL value has been increasing in both eyes over the years...

I think I will probably struggle to find any consultant who does in under BUPA (seems like BUPA don't pay too much for this procedure).. but will try to find

The only other question I had was if just cross-linking is enough - I am reading that these days (maybe not in the UK) people have started gettting some sort of laser surgery and cross-linking done together instead of just cross linking.. seems like in the UK there are some places which offer TCAT + CXL together but not sure what makes this more suitable than normal cross linking.

RedOnion
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Re: CXL one eye or both?

Postby RedOnion » Mon 15 Jan 2024 7:24 am

I wasn’t offered any laser when I had mine done so I can’t really comment on it. Must admit I’ve considered it though, mostly for the night vision!

I paid for my procedure out my own pocket which was a bit sore! I could have had on NHS but the wait was too long.

cameronpcollier
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Re: CXL one eye or both?

Postby cameronpcollier » Sun 21 Jan 2024 7:01 pm

I had CXL on my right eye.. which was clearly progressing at a young age.

My left (better) eye has remained relatively stable for eight years now.. the advice given to me was if it’s not broke, don’t fix it.

For peace of mind, it’d be nice to know the left had little to no chance of progressing by having CXL. However, a few have said that if it’s been stable for this long.. it’s unlikely to progress anyway!

Hope that helps make your mind up. P.s. the CXL surgery itself is fine.. just use your painkiller goody bag that they prescribe after surgery to make yourself more comfortable :).

taffer87
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Re: CXL one eye or both?

Postby taffer87 » Thu 25 Jan 2024 1:22 pm

cameronpcollier wrote:I had CXL on my right eye.. which was clearly progressing at a young age.

My left (better) eye has remained relatively stable for eight years now.. the advice given to me was if it’s not broke, don’t fix it.

For peace of mind, it’d be nice to know the left had little to no chance of progressing by having CXL. However, a few have said that if it’s been stable for this long.. it’s unlikely to progress anyway!

Hope that helps make your mind up. P.s. the CXL surgery itself is fine.. just use your painkiller goody bag that they prescribe after surgery to make yourself more comfortable :).

thanks unfortunately for me it seems the good eye is also progressing but at a much lower pace so will just get it done on both

I am doing the PRK + CXL option at Moorfields privately under insurance (similar to Athens protocol where they can also make a small improvement on refraction via laser). Will update after

RedOnion
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Re: CXL one eye or both?

Postby RedOnion » Fri 26 Jan 2024 11:22 am

I hope it all goes well for you :)


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