Cross Linking

General forum for the UK Keratoconus and self-help group members.

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RyanP
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Keratoconus: Yes, I have KC
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Re: Cross Linking

Postby RyanP » Thu 17 Oct 2013 4:37 pm

Libby wrote:Ryan where abouts are you getting your cxl done - is it through a hospital x

Hi Libby, a consultant at the hospital is doing the procedure through a private hospital (Spire Healthcare to be precise)

jayboi2005
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Keratoconus: Yes, I have KC
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Re: Cross Linking

Postby jayboi2005 » Fri 18 Oct 2013 1:45 am

Good luck, does anybody know which NHS hospitals are currently offering CXL?

It's been many years since I have been an active member around here, I remember the days when you could only really get this done in Dresden. I attend the Mandhester Royal Eye Hospital which is miles from my home however it's a fantastic hospital.

Sorry to hijack the thread, and again good luck! From memory it's relatively safe, so I'm sure luck isn't anything you're going to need. :)

RyanP
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Keratoconus: Yes, I have KC
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Re: Cross Linking

Postby RyanP » Tue 22 Oct 2013 7:35 am

I'm so used to saying it's 'Next Saturday', now it's 'This Saturday'.

Really nervous, but hopefully after the first eye is done I'll realise there's not a lot to be nervous about! (well that's the plan anyway!!)

vintagerose1962
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Keratoconus: No, I don't suffer from KC
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Re: Cross Linking

Postby vintagerose1962 » Tue 22 Oct 2013 4:18 pm

Ryan,

Good luck with the op!!!

I haven't been here for a very long time, but just wanted to say that my daughter has KC and yesterday at moorfields I requested referral for the C3R which after a great debate about the pros and cons he made the referral. I should here from the consultant in a couple of weeks but If I don't have been requested to phone!!

My daughter has this condition and I know that C3R has been approved by NICE, and it was mentioned about 3 months ago to my daughter. So naturally I asked for the referral yesterday. To be honest don't know how much it will cost, if any as there was no time to have a detailed discussion.

I was going to Accuvison but hesitated as I felt I needed to see what Moorfields have to say about C3R. I am learning about this procedure and whilst I understand it does not cure KC, it can however slow down the process. I will learn more hopefully in a few weeks once I meet with the consultant who deals with C3R.

Anxious Mum

RyanP
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Keratoconus: Yes, I have KC
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Re: Cross Linking

Postby RyanP » Wed 23 Oct 2013 10:42 am

vintagerose1962 wrote:Ryan,

Good luck with the op!!!

I haven't been here for a very long time, but just wanted to say that my daughter has KC and yesterday at moorfields I requested referral for the C3R which after a great debate about the pros and cons he made the referral. I should here from the consultant in a couple of weeks but If I don't have been requested to phone!!

My daughter has this condition and I know that C3R has been approved by NICE, and it was mentioned about 3 months ago to my daughter. So naturally I asked for the referral yesterday. To be honest don't know how much it will cost, if any as there was no time to have a detailed discussion.

I was going to Accuvison but hesitated as I felt I needed to see what Moorfields have to say about C3R. I am learning about this procedure and whilst I understand it does not cure KC, it can however slow down the process. I will learn more hopefully in a few weeks once I meet with the consultant who deals with C3R.

Anxious Mum

Thank you for your kind words, I wish all the best with the consultation meetings for your daughter.

I was told by my local hospital it would be funded, however got to my consultation meeting and was told I'd have to pay as I'd be going private. Without going in to too much detail, I'm paying roughly £1,500 per eye.

I made the mistake of watching a crosslinking procedure being done on YouTube, so it's worrying me even more :(

vintagerose1962
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Keratoconus: No, I don't suffer from KC
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Re: Cross Linking

Postby vintagerose1962 » Wed 23 Oct 2013 3:45 pm

Afternoon all,

Ryan,

goodness, the amount of stuff I read and watched a video too on youtube, its so much to take in. I think the price you quoted is about what I'd expect to pay, but then we cant put a price on sight. I 'll be thinking of you on Saturday, and believe all will be well!!!

I have driven myself around the bend, trying to learn about this procedure, trying to understand it, but most of all , is it the right thing for my daughter, well I still believe it is!!

What your about to do is no small thing, so take a deep breath, fill your mind with good thoughts!! and believe your doing the right thing!!

Hope to hear from you whenever that time is right!!

Pam

RyanP
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Keratoconus: Yes, I have KC
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Re: Cross Linking

Postby RyanP » Mon 28 Oct 2013 10:53 am

Hi all,

Had my cross linking done Saturday.

Was in a lot of discomfort that evening which meant very little sleep! I was given some eye drops which really helped ease the pain. My eye is still quite swollen and extremely sensitive to the light so I've bought a pair of sunglasses!

Procedure itself was fine though, the worst part about it was towards the end.

I'm back there Wednesday to have my lens removed.

Just one question, is it normal for the eye to be slightly swollen a few days on? It feels really heavy and quite uncomfortable still too

vintagerose1962
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Keratoconus: No, I don't suffer from KC
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Re: Cross Linking

Postby vintagerose1962 » Fri 08 Nov 2013 1:52 pm

Ryan, so you finally had the op!!! I came here just to see if you had replied and to let us know you got on. I wish I could answer your question regarding swelling. I hope someone else will come along and be more informative.

Can I ask how long did the op take?

You mentioned having the lens removed. I knew one would be fitted, but due to knowing very little, I wonder how long it would remain in after the op.

I am having a problem trying to get the consultant to make a referral for my daughter and will discuss this issue on Monday as adviced today. it has been suggested that although the refrerral is being made it still hasn't.

I am wondering to be honest if there is a time scale for the this op, I have no real ideal about waiting times etc....

My previous debated evolved around issues about if the progression has halted, was it due to the KC or the op. I asked the consultant in his experience how many people does he know where KC has not progressed. His answer were two people who were pensioners!!! His argument is why put my daughter through crosslinking, when it could be the KC that has not progressed. I am confused and asked then why has crosslinking being approved by NICE. He is not doing a great job of putting me off!

I hope your healing is quick and the swelling heals.

Hugs.

Pam

AMP
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Re: Cross Linking

Postby AMP » Mon 11 Nov 2013 5:44 pm

Hi All,

I'm not sure whether this is the right place to post my problem, any advice will be much appreciated.

I have keratoconus in both my eyes; I'm wearing a gp lens in my left eye, in my right eye i believe are the early symptoms; double vision, i can still see without any visual correction. Should getting the right eye cross linked be a good option? I think if I get it done sooner i may just get away with glasses instead of a GP Lens, what do you guys think?
Another problem im having is that i cant seem to get an appointment with the eye clinic any sooner, there is a 3 month wait; i think my vision would have got worse by then.

Anne is the genetic study still ongoing? Does art of the study involve the cross-linking procedure? can I be a part of it? how long would it take to get a place for the trial?

Thank you

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Anne Klepacz
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Re: Cross Linking

Postby Anne Klepacz » Wed 13 Nov 2013 12:03 pm

Hello AMP,
I've replied to your other post, but as far as the genetic study is concerned I think it is still ongoing (and they are particularly interested in people who have brothers or sisters with KC) but this study doesn't include anything on crosslinking and I don't know of any crosslinking trials going on at the moment. But if anyone else does, please let us know!
Anne


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