CXL - Advice sought

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Jugger
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Keratoconus: Yes, I have KC

CXL - Advice sought

Postby Jugger » Tue 21 Jan 2020 8:03 pm

Hello

I'm still able to get good sight with contact lenses.

At my annual review today with my consultant, he said that my right eye has gradually been getting worse. He recommended I have cross linking to halt the progression. We discussed this years ago, but he had said then that he needed to see consistent deterioration. I'm seen at the Princess Royal Hospital in Kent.

I'm reticent to have the procedure done, as I've had other surgeries on my body which haven't necessity yielded the results I'd hoped.
I have 2 young kids, so the idea of being helpless because of not seeing for some time does scare me. That said, I don't want to be careless and not be proactive in doing something that could/ should make my life better.

I'm almost 37 and was under the impression that the condition should stabilise in your 40s, so unsure of the 'value' in doing this now?

I'd appreciate any advice from anyone who has had this procedure and to hear what their experience was like (including recovery) and any thoughts/ suggestions on things I should ask / consider before doing this.

Thanks

Jugger







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CrippsCorner
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Re: CXL - Advice sought

Postby CrippsCorner » Tue 28 Jan 2020 11:58 am

It is a very tough choice and the exact same one I had to make! I had previously had CXL in my bad eye, and it went well. Then I was stuck thinking about whether to go for it with my good eye... ultimately I thought, I want to keep my good vision, so yes let's go for it.

Bad choice. Precedure had complications and my good eye is now my bad eye. Terrible in fact and I'm left basically needing a transplant to ever see prooperly out of that eye.

I'm not here to put people off CXL, it worked well for me that first time. But, if you're sitting on the fence and you're 30+ I would seriously consider not going for it; I wish I hadn't!

Jugger
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Posts: 37
Joined: Wed 03 Oct 2012 6:16 pm
Keratoconus: Yes, I have KC

Re: CXL - Advice sought

Postby Jugger » Sun 09 Feb 2020 4:51 pm

CrippsCorner wrote:It is a very tough choice and the exact same one I had to make! I had previously had CXL in my bad eye, and it went well. Then I was stuck thinking about whether to go for it with my good eye... ultimately I thought, I want to keep my good vision, so yes let's go for it.

Bad choice. Precedure had complications and my good eye is now my bad eye. Terrible in fact and I'm left basically needing a transplant to ever see prooperly out of that eye.

I'm not here to put people off CXL, it worked well for me that first time. But, if you're sitting on the fence and you're 30+ I would seriously consider not going for it; I wish I hadn't!


Thanks for sharing your situation. Did you have both eyes done at the same hospital?

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CrippsCorner
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Keratoconus: Yes, I have KC
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Re: CXL - Advice sought

Postby CrippsCorner » Thu 13 Feb 2020 5:41 pm

Yes, privately at BMI.


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