Options?

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CrippsCorner
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Re: Options?

Postby CrippsCorner » Tue 06 Oct 2020 11:56 am

I've just read through this entire thread and it seems you've been on quite a journey! Sorry to hear of the mental effects on your life, I'm sure we've all been there at some point. I have more or less given up trying to get better vision now, so is why I don't often visit here any more.

I was however interested in this that you wrote:

liam82 wrote:My fantastic optician mentioned having the crosslinking scar lasered off and it was like a door opened.


I've never heard of this before. I suffered from corneal hazing after CXL which years later hasn't improved at all. I know it's not the same as a scar, but I wonder if there's anything they could do... my local 'specialist' (who I don't have much faith in) told me my only option was a graft.

Maybe I should get myself an appointment at Moorfields after covid has died down.

Please continue to update :!:

liam82
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Re: Options?

Postby liam82 » Wed 18 Nov 2020 10:20 pm

Hello!

Sorry, it's taken me so long to do an update but it's been a mad few weeks. I work in the NHS and have only gone back in this week and it's like walking into a hurricane.

On the 6th of October, I had a PRK on my left eye and PRK plus CXL on my right eye. The aim wasn't to improve focusing in the way laser surgery does for most people, it was to make corneas of both eyes a more regular, rounded shape, so that they would be better suited to glassed, remove a scar from the middle of my left eye (a long lasting result of it being crosslinked in 2011) and the CXL was to stabilise the right eye. So if anything I was expected to be more likely to need glasses where before I hadn't.
My right eye was still 20/20 but the ghosting and starbursting were getting so bad and the vision fluctuating - if that makes sense?

On the day I was surprised by how quickly and differently it all happened. When I had CXL performed in 2011 it took about 30 minutes and the surgeon used a scalpel to take the epi off. I don't think there's anything I've experienced more surreal than watching someone move a blade around inside my eye. This time though, the new consultant used a brush and it was far shorter. The PRK was also very brief so I was out really quickly. After the procedure everything was very cloudy and the best way I can describe it is it's a bit like the old Silent Hill videogame on the original PlayStation!

Upon leaving Moorefields I was given an enormous package of medication and drops with a schedule to stick to lasting 4 weeks. For the first day, it's as often every 15 minutes with some of the drops and then it gradually changes over the next 4 weeks. The next few days were tough due to pain, discomfort as well the bluriness and intense light-sensitivity. Over the following days the pain went and vision slowly started to improve. Once a week passed it was back to London for a check-up and to have the bandage contact lenses removed. Things had healed great and whilst vision was still blurry it was continuously improving to a point where I could manage. Overall I think it was around 2 weeks before it really returned. That being said, I wound up needing 4 weeks off work as I work heavily with computers and the vision wasn't comfortable enough to sit and use screens for any length of time.

So where are we now? Well, thankfully things are in a much better place. My left eye is still blurry but for the first time in 9 years I can actually read with it. The surgery has made it more short-sighted but I cannot stress how amazing it was to read text with my left eye. Not just big letters but even the smallest print on the backs of bottles and stuff. It's not sharp, but it's only been a month or so and this is a ginormous leap from where it's been for the last decade. The way I discovered this was by complete accident. Prior to surgery, the font size on my iPhone was set to 150% due to my vision but last week I was finding it really uncomfortable reading anything on it. The text just seemed way too big and was hurting my brain so I had to reduce it to the default setting of 100%. Confused, I closed my right eye and realised I could actually read it with my left eye.

The other incredible thing was David, from Brooks and Wardman, then managed to get my left eye to 20/20 in glasses. After being diagnosed with KC in 2011 and then having crosslinking, I've been to dozens of opticians and optomertrists up and down the country but never been able to get any correction. So this is pretty huge. David also did a scan on my eyes and it looks like the surgery removed around 90% of the scar from left eye. I can tell, not just because of the sudden ability to read with it - but because things don't feel hazy anymore. Both eyes also look far more normally shaped on the scans.

My vision is better in both eyes and even around a week after surgery, I noticed the ghosting and starbursting that had gradually overwhelmed my sight were either greatly reduced or completely gone. There is still some slight ghosting downwards, but for the first time in years I can see white text on a black screen without it looking like an explosion. However, and somewhat ironically, as my right eye is still healing and is very dry when I squint I do get a side effect of really clear monocular double vision, but that's improving too. I do still find things a bit too bright outside even on a very dull day, and I've had to adjust the brightness on my tv but it's getting better too. I guess the best way to describe it is with that it almost feels like there's too much information for my eyes to handle.

As you are reading this then you have no doubt encountered KC and the difficulties in correction that come with it,so you will probably understand how profound these improvements have been to me. There's still a long way to go, I know and my surgeon says things should continue improving over the coming months, settling down in 6 months to a year. I am picking up a pair of glasses tomorrow that should help me focus, as my right eye has been so dominant for almost a decade my brain is struggling a little to combine the images now my left eye is starting to have a say again.

My mood is much more positive, anxiety levels are FINALLY going down little by little, and it feels like the weight of KC on my shoulders has massively lightened. The spectre of KC isn't as looming or all-consuming as it once was. That moment I realised my left eye could read text is something I've dreamt of for 9 years and so when it did happen, unexpectedly and without glasses or contacts, it threw me. My personal goal was to be able to use Photoshop again within 3 months. In the middle of this year my vision made it too uncomfortable, but it was only 3 weeks before I was able to use it again. If things continue to improve then obviously that would be amazing, but I appreciate that things can fluctuate.

Sorry for the long ramble. But when you google these procedures there isn't a wealth of peoples personal experiences. So I hope this can help someone else who is spending their evenings digging through Google looking for insight into these procedures before deciding whether to have them themselves. It's not easy. The recovery can be painful as well stressful and it's also incredibly expensive. But for me personally, it's made a level of difference that can't be overstated. To feel like myself again is the greatest gift and one I don't wish to waste, so I have signed up to do a journalism diploma at the grand old age of 37 (38 in two weeks!). I'd also really like to write about KC in some capacity!

Much love to you all.

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Anne Klepacz
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Re: Options?

Postby Anne Klepacz » Thu 19 Nov 2020 11:01 am

What a wonderful outcome! Thank you so much for posting about this procedure. You're certainly the first to do so on this forum and I'm sure it will help others contemplating their options. Do keep in touch and let us know how things progress over the coming months.
And all the very best with your career change. It will be great to have a professional journalist giving KC a voice!

RedOnion
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Re: Options?

Postby RedOnion » Thu 19 Nov 2020 12:19 pm

That’s outstanding! Such a well written and positive write up and hopefully it helps someone else with their own experience.

Keep us up to date with it all and good luck with the journalism!

Heyssharon
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Re: Options?

Postby Heyssharon » Fri 11 Dec 2020 10:05 pm

Wow! So great to hear of your success story. You are completely correct there’s very little information on this condition and how it affects people personally. I really hope your experience helps others to feel there is hope for them.

Juned
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Re: Options?

Postby Juned » Mon 10 Apr 2023 2:12 pm

Hi all,

@liam82 glad to hear your success on the procedure.

I am also considering getting PRK done on my left eye at Moorfields. It currently has a thickness of around 470um with my K values being around 45 - 47 dioptres. I was told during an eye test at Moorfields by the (person carrying out the test) that she does not think PRK would be suitable in general due to an already thinning cornea (my left eye has already had cross-linking carried out a year ago and seems to be stable).

Wanted to get your thoughts on if I would likely be suitable for PRK, and what type of PRK (from the options that Moorfields Private offers).


Lastly, if it isn't too much of an ask, if you could mention the cost for these procedures, from the initial consultation to actually carrying out PRK on your eye. I'm not sure if I would have to get cross linking again in my left eye if I go through the PRK route.


Thanks Again

liam82
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Keratoconus: Yes, I have KC
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Re: Options?

Postby liam82 » Tue 26 Sep 2023 5:34 pm

Juned wrote:Hi all,

@liam82 glad to hear your success on the procedure.

I am also considering getting PRK done on my left eye at Moorfields. It currently has a thickness of around 470um with my K values being around 45 - 47 dioptres. I was told during an eye test at Moorfields by the (person carrying out the test) that she does not think PRK would be suitable in general due to an already thinning cornea (my left eye has already had cross-linking carried out a year ago and seems to be stable).

Wanted to get your thoughts on if I would likely be suitable for PRK, and what type of PRK (from the options that Moorfields Private offers).


Lastly, if it isn't too much of an ask, if you could mention the cost for these procedures, from the initial consultation to actually carrying out PRK on your eye. I'm not sure if I would have to get cross linking again in my left eye if I go through the PRK route.


Thanks Again


Hi, sorry for the delay in replying and I hope you’ve found answers in the meantime. :)


In a couple of weeks it will be 3 years since I had these procedures and it’s surreal. It’s completely changed my life. I have 6 monthly scans and my eyes have remained stable. But not having that worry about KC hanging over me has freed my brain to move forward in leaps and bounds and focus on other things.


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