Intacs

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Anne Klepacz
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Posts: 1965
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Intacs

Postby Anne Klepacz » Thu 11 Sep 2008 10:55 am

Hello Linda
While it's true that KC seems to develop quickly in some youngsters, we also have quite a few members who were diagnosed as young as your son and are still happily wearing contact lenses 40 years later! As you say, KC is very unpredictable so it's a question of just taking things day by day and trying not to worry about what the future may (or may not) hold. And there's another option which may become generally available in the next few years - collagen crosslinking, which is currently being trialled in some NHS hospitals, and holds out hope of stopping the progression of KC. Have you had our latest newsletter and 2007 conference DVD which has more about this? If not, drop me an e-mail and I'll put them in the post to you.
All the best
Anne

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linda36
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Joined: Mon 24 Sep 2007 11:25 am
Keratoconus: No, I don't suffer from KC

Re: Intacs

Postby linda36 » Mon 22 Sep 2008 9:28 am

Anne

Thank you so much for the newsletter and dvd. After watching the dvd my husband and I feel more determined to face my sons problems head on. The information was fantastic. Just a quick question I hope you don t mind, my sons other eye has now developed slightly with KC and as you know he is 12, if it was to develop as fast as the other, is it true that we have to wait until he is 16 until he can be treated? The consultant we see has discussed all options to us but never mentioned having to wait. He is a fantastic man who will I am sure help my son in any way but if his hands are tied then what can he do. We did nt know this until we watched the dvd. We see the consultant every 6 to 8 weeks.

Thank you again

Kind regards

Linda

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Anne Klepacz
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Posts: 1965
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Intacs

Postby Anne Klepacz » Mon 22 Sep 2008 10:03 am

Hi Linda - I'm glad you found the DVD and newsletter helpful. I'm assuming that when you ask about 'treatment' before age 16, you're thinking about crosslinking? If so, you'll have seen from the newsletter that the consultant doing the Moorfields trials was hoping that he might be able to do trials with younger patients. I don't know if there's any progress on that. But a lot can change in a couple of years in terms of treatment options. It's only a year or two since crosslinking has been available privately in the UK, but if the trials are successful, then it could well be available on the NHS in a year or two. And then I imagine that hospitals like Moorfields which have a children's unit would be able to treat under 16s. And of course, your son's other eye may not progress at all while the main KC eye may just have had a 'spurt' which will now slow down. Your consultant is obviously monitoring things closely and will be able to review options as and when. I know it's a worrying time for you, but it sounds as though you're in very good hands.
All the best
Anne

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linda36
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Posts: 21
Joined: Mon 24 Sep 2007 11:25 am
Keratoconus: No, I don't suffer from KC

Re: Intacs

Postby linda36 » Mon 22 Sep 2008 1:59 pm

Anne

Thanks for the advice. I think the most frustrating part of all is the fact that unfortunately no one knows what the future holds either good or bad. I guess its like everything a waiting game. At the moment he has steroid drops for both eyes and another drop four times a day and we were told not to use the lens. We have a review in 7 weeks. He is coping very well. I have an appointment with his headteacher so I can give them the factsheet. As KC is uncommon I feel the info will help.

Thank you and good health to you and all

I will keep you updated

Kind Regards

Linda

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Michal
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Posts: 3
Joined: Sun 05 Oct 2008 9:35 pm
Keratoconus: Yes, I have KC
Vision: I have Intacs implanted
Location: London, UK

Re: Intacs

Postby Michal » Sun 05 Oct 2008 10:25 pm

Just want to add few pennies from me:

I wasted half a year at the Western Eye Hospital trying to do something with my keratoconus about a year ago. I got a pair of contact lenses from them but I gave up after a month of struggling to live with them (and trust me, I was desperate to do *anything* to see better). I asked if there is any way to find me a pair of new lenses as I could not tolerate the original ones in any way but I was told that the lenses they got me were the best I could get and they could not do anything else to help me. Basically, they left me with a choice: "£100 for a pair of our, useless lenses that you cannot tolerate but we think are the best for you or do it your own way".

So here I am, one year later with a little fortune in both of my eyes (intacs, obviously). It has been 3 months since the first surgery, just about 2 weeks from the second one so nothing special so far but fingers crossed.

The reason why I am writing this post is that I also asked about intacs and x-linking back there and I was told that neither of these treatments will improve my vision anyway, that they are still new and not tested properly and if I want them I have to go somewhere privately and pay a lot - a bit surprising comparing to what I just read over here.
/ I am new here so "hello" everyone. I am also not the smartest one when it comes to English so please excuse my grammar, I am doing my best. /

GeorgeH
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Posts: 1
Joined: Thu 30 Oct 2008 10:49 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Intacs

Postby GeorgeH » Thu 30 Oct 2008 11:13 am

Hi there,

I'm 16 at the moment and was diagnosed with KC when I was 12. I first started experiencing symptoms when I was about 10-11, when I was prescribed some glasses that seemed to need changing every few months, they came to the conclusion it was KC and decided to fit me with some gas-permeable lenses. It took me about a month to get used to the sensation of having hard lenses in my eyes, which I must admit was rather painful at first, but with persistence.. (Having them in for a couple of minutes the first day, five minutes the next, fifteen minutes the next and so forth...) managed to get comfortable with them so that I can wear them from about 7:00am to about 10:00pm which satisfies all that I need to achieve during the day.

I'm not sure to the extent of my KC, when I read the letter chart, I can vaguely work out the very deformed shape of the first letter, but that's about it (without my lenses). However, with my lenses I can almost read the bottom line which I believe is actually better than average, so I'm perfectly happy with my vision as it is with my lenses in. The only side-effects I notice are my photophobia... in the mornings once I've put my lenses in it takes me about 5 minutes to get accustomed to the light, having to go into a relatively light room first, adapting to it and gradually working up to daylight. This might seem a problem but I have got used to it and it's just come apart of my daily routine. The main problem I face is driving at night, I don't drive yet, but when I'm sitting in the passenger seat of the car and am imagining driving the car, I always have to shut my eyes when a car comes along with their lights on full, my eyes can't cope with this amount of light.. I hope there might be a way around this else I fear I might not be able to drive at night.

I suffer from hay-fever so my eyes are naturally very sensitive. I would advise anyone who has hay-fever to buy a good pair of sunglasses.. I often find during the summer when it's not especially light still needing to use sunglasses else having to strain my eyes, using sunglasses really helps so I would totally recommend this for anyone in this situation.

To Linda:

I wouldn't panic about your son having KC, I don't know anyone who has it, which people might imagine could be daunting. It is sometimes, for example I don't participate in rugby at the risk that my lenses might fall out if I was harshly tackled.. and people did find it curious that my eye condition disabled me from doing rugby.. However, like with most things in life after explaining to those who were interested why I couldn't play, they seemed far more supportive.

Times can be hard sometimes, but as long as you are supportive to your son I'm sure everything will be normal to him. My dad couldn't understand why I used to squint all the time, (It was because my glasses' prescription was rapidly changing), and used to say I looked odd! It's quite funny come to think of it now, but I'm glad to see you are there to support him. That said, I might be making it out to be far more serious than it actually is, at the end of the day, most people live ordinary lives just wearing hard contact lenses instead of soft ones and can cope with life just the same as everyone else, there's nothing to be afraid of!

I hope this has helped, and feel free to ask me anything if you have need of a question to a teen going through KC treatment as we speak!

Best wishes,
George.

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Anne Klepacz
Committee
Committee
Posts: 1965
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Intacs

Postby Anne Klepacz » Thu 30 Oct 2008 4:57 pm

Hi George
Just wanted to say welcome to the forum, and to thank you for your wonderful post which I'm sure will be reassuring to anyone new to keratoconus, whether teenager or parent. It's really heartening that you're managing so well, and are so positive. Night driving can be a problem for those with KC, but I think there were some suggestions on this forum a year or two ago - you might find them if you search on 'night driving'. In the meantime, all the best.
Anne

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linda36
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Posts: 21
Joined: Mon 24 Sep 2007 11:25 am
Keratoconus: No, I don't suffer from KC

Re: Intacs

Postby linda36 » Sat 01 Nov 2008 5:46 pm

To George

Just a quick note to say thank you very much for your kind words. It is very good to know that there are other people sharing their problems that are similar to ours. Anthony 's good eye can read to the third line from the bottom at the moment. His bad eye however is similar to yours with the top line unreadable without the lens. He can' t wear his lens at the moment because he has scarring and corneal frost vessels (what they are I don't know but we are at the hospital in a few weeks and I will find out] Anthony doesn't complain much and loves his trip to the town to the hospital as he misses school.

Thanks again and I am sure I will be in touch with various questions for you as time goes on.

Kind regards

Linda

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Andrew MacLean
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Posts: 7707
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: Intacs

Postby Andrew MacLean » Sat 08 Nov 2008 4:06 pm

Hi George

Welcome to the forum and thank you for your post. I have moved it to the General Discussion Forum so that others who do not visit FAQ's may also read it.

Andrew
Andrew MacLean

samanthab
Newbie
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Posts: 1
Joined: Mon 08 Dec 2008 8:19 pm
Keratoconus: No, I don't suffer from KC

Re: Intacs

Postby samanthab » Mon 08 Dec 2008 8:36 pm

Hello
I've just discovered and registered with this support group and may I say am amazed that there are so many issues surrounding these difficulties.
Up until thhis evening I thought that we as parents, were the only ones experiencing the fright that accompanies news when you are told your 10 year old needs intacs....
We have been told that he will be having intac surgery imminently, but now after having read evidence about UV cross linking,,,I am concerned that he should have this first..???
Apologies if this is a ridiculous suggestion, but we are still trying to lok at all aspects...
and did I read somewhere that there is some kind of '' machine''??
Samantha


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