Cross Linking

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RyanP
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Keratoconus: Yes, I have KC
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Cross Linking

Postby RyanP » Thu 17 Oct 2013 9:37 am

Hi all,

I'm sure you get a lot of people like me who ask this, so apologies!

I was diagnosed with KC this year after my eyesight had deteriorated to an extent where I couldn't carry on driving. My right eye is a lot worse than my left (in fact, I have to squint my left eye to be able to make sense of anything!)

About 3 weeks ago I had an appointment at Addenbrookes hospital (Cambridge) to see a specialist. He said I'd need Cross Linking on my right eye as soon as possible, as it was on the borderline of not being able to have this treatment.

So I'm booked in for my right eye next Saturday (26th) and my left eye 23rd November - it's all come around so quickly!

I have a few questions to anyone who has had this,,,
I presume having to go private is the norm with this type of treatment?
How did you feel after the operation? Mine's in the morning so I'm slightly worried if I'm in paid because I have the rest of the day to go through.
Did you wake up in pain?
What was it like during the treatment? Could you feel it being done?

Sorry for all the silly questions!!

RyanP
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Posts: 12
Joined: Thu 17 Oct 2013 9:05 am
Keratoconus: Yes, I have KC
Vision: Other

Re: Cross Linking

Postby RyanP » Thu 17 Oct 2013 9:38 am

I forgot to mention as well, my brother has just been diagnosed with it, and my Dad has it also. Has anyone else been in this sort of situation?

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Anne Klepacz
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Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Cross Linking

Postby Anne Klepacz » Thu 17 Oct 2013 10:40 am

Hello Ryan and welcome!
No apologies needed - this is the place to come if you want to talk to other people who know what it's like to have KC.
There's just a handful of hospitals that offer CXL on the NHS (though hopefully that will begin to change now that NICE has approved it and more hospitals will apply for NHS funding). So we have a mixture of forum users who have had it done on the NHS and privately. They'll be able to tell you more about their experience, though from posts I've read here the procedure itself isn't painful at all, but it can be painful for the first day or two afterwards. You'll be given painkillers to help with that.
Most people with KC don't have anyone else in the family with it, but there are some families were several people seem to be affected. Those families are of great interest to researchers who are looking at the genetics of KC. I think the genetic study at Moorfields is still going on. If your family would be willing to take part in the research, let me know, and I can let you know who to contact.
All the best
Anne

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

Postby James_Ldn » Thu 17 Oct 2013 11:46 am

Hi Ryan,

I had cross-linking done on both eyes and yes, I think in most cases it is still done privately.

As Anne says, the procedure itself isn't painful (mainly due to the anaesthetic drops they put in your eye) but it certainly is painful for the first 48-72 hours afterwards. I think regardless of the time of day you have it done, you'll want to go to bed straight after!

Also, my eyes stayed sensitive to light for the first week after each procedure. After the first couple of weeks, vision is more or less restored but it took 3 months overall for each eye before my vision was back to how it was before the cross-linking.

Hope this helps,
James.

RyanP
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Contributor
Posts: 12
Joined: Thu 17 Oct 2013 9:05 am
Keratoconus: Yes, I have KC
Vision: Other

Re: Cross Linking

Postby RyanP » Thu 17 Oct 2013 11:55 am

Anne Klepacz wrote:Hello Ryan and welcome!
No apologies needed - this is the place to come if you want to talk to other people who know what it's like to have KC.
There's just a handful of hospitals that offer CXL on the NHS (though hopefully that will begin to change now that NICE has approved it and more hospitals will apply for NHS funding). So we have a mixture of forum users who have had it done on the NHS and privately. They'll be able to tell you more about their experience, though from posts I've read here the procedure itself isn't painful at all, but it can be painful for the first day or two afterwards. You'll be given painkillers to help with that.
Most people with KC don't have anyone else in the family with it, but there are some families were several people seem to be affected. Those families are of great interest to researchers who are looking at the genetics of KC. I think the genetic study at Moorfields is still going on. If your family would be willing to take part in the research, let me know, and I can let you know who to contact.
All the best
Anne

Hi Anne,

Thank you very much for your reply. Regarding the genetic study, am I OK to pop you a PM once I've got my right eye out the way?

Ryan

RyanP
Contributor
Contributor
Posts: 12
Joined: Thu 17 Oct 2013 9:05 am
Keratoconus: Yes, I have KC
Vision: Other

Re: Cross Linking

Postby RyanP » Thu 17 Oct 2013 12:00 pm

James_Ldn wrote:Hi Ryan,

I had cross-linking done on both eyes and yes, I think in most cases it is still done privately.

As Anne says, the procedure itself isn't painful (mainly due to the anaesthetic drops they put in your eye) but it certainly is painful for the first 48-72 hours afterwards. I think regardless of the time of day you have it done, you'll want to go to bed straight after!

Also, my eyes stayed sensitive to light for the first week after each procedure. After the first couple of weeks, vision is more or less restored but it took 3 months overall for each eye before my vision was back to how it was before the cross-linking.

Hope this helps,
James.

Hi James,

Did your eyesight improve at all? I know it's rare, but in some cases it is said to improve slightly - although the main aim is to delay/halt the progression.

I've got to admit, I'm really nervous about after the operation, I imagine it's the type of pain you can't do anything about (apart from obviously applying eyedrops etc)

Do you now have contact lenses? Have they helped improve your vision a lot?

I use to wear glasses for driving lessons, but even then I couldn't see the number plate so had to cancel my practical test - so ideally I'd like to be able to get back on the road, that's my aim anyway.

Sorry for all the questions, they keep popping in to my head and I haven't really had long to think about all this!!

Ryan

James_Ldn
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Posts: 67
Joined: Sat 29 Sep 2012 11:20 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Cross Linking

Postby James_Ldn » Thu 17 Oct 2013 12:13 pm

RyanP wrote:Hi James,

Did your eyesight improve at all? I know it's rare, but in some cases it is said to improve slightly - although the main aim is to delay/halt the progression.

I've got to admit, I'm really nervous about after the operation, I imagine it's the type of pain you can't do anything about (apart from obviously applying eyedrops etc)

Do you now have contact lenses? Have they helped improve your vision a lot?

I use to wear glasses for driving lessons, but even then I couldn't see the number plate so had to cancel my practical test - so ideally I'd like to be able to get back on the road, that's my aim anyway.

Sorry for all the questions, they keep popping in to my head and I haven't really had long to think about all this!!

Ryan


Hi Ryan,

It's only been a year since I had the first eye done so it's probably still a bit too soon to see a noticeable improvement. However, my vision hasn't got any worse either which is obviously good, and the follow-up scans I've had show a slight improvement in one eye so far, so it's heading in the right direction.

I have been wearing contact lenses since the cross-linking was done and I've had mixed results. However, that's mainly because you learn that getting contact lenses to work when you have keratoconus often requires a lot of trial and error. Sometimes I've had lenses which give 20:20 vision, others not so great, but it's very much an ongoing process. It doesn't help that for the months after the cross-linking your prescription fluctuates which means you might have to change contact lenses quite frequently.

I think everyone feels a bit nervous about having cross-linking done, but from my own experience I'd say it certainly is worth it if it halts the progression of keratoconus (and can often improve things as the years go on). The pain for the first couple of days is unpleasant but it soon goes and it's nothing to worry about.

Hope this helps,
James.

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Anne Klepacz
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Posts: 2069
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Cross Linking

Postby Anne Klepacz » Thu 17 Oct 2013 12:45 pm

Hi Ryan
Yes, of course, get your CXL out of the way first! All the best and let us know how you get on.
Anne

RyanP
Contributor
Contributor
Posts: 12
Joined: Thu 17 Oct 2013 9:05 am
Keratoconus: Yes, I have KC
Vision: Other

Re: Cross Linking

Postby RyanP » Thu 17 Oct 2013 12:53 pm

James_Ldn wrote:Hi Ryan,

It's only been a year since I had the first eye done so it's probably still a bit too soon to see a noticeable improvement. However, my vision hasn't got any worse either which is obviously good, and the follow-up scans I've had show a slight improvement in one eye so far, so it's heading in the right direction.

I have been wearing contact lenses since the cross-linking was done and I've had mixed results. However, that's mainly because you learn that getting contact lenses to work when you have keratoconus often requires a lot of trial and error. Sometimes I've had lenses which give 20:20 vision, others not so great, but it's very much an ongoing process. It doesn't help that for the months after the cross-linking your prescription fluctuates which means you might have to change contact lenses quite frequently.

I think everyone feels a bit nervous about having cross-linking done, but from my own experience I'd say it certainly is worth it if it halts the progression of keratoconus (and can often improve things as the years go on). The pain for the first couple of days is unpleasant but it soon goes and it's nothing to worry about.

Hope this helps,
James.


Hi James,

You've been a great help - thank you very much! I'm sure between now and next Saturday more questions will pop in to my head, I'll have a search around the forum later as well.

Really glad I managed to sign up before I have it done. Sometimes the doctors don't always explain it in the correct way, and you can only speak to family about it so much, because it's not common enough for everyone to know the ins and outs of it.

Thanks again,
Ryan

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

Postby Libby » Thu 17 Oct 2013 3:43 pm

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


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