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Dutchman with KC in UK, Eye Hospital Rotterdam

Posted: Mon 28 May 2007 5:10 pm
by Brinky
Hi all,

I'm from The Netherlands spending almost 7 weeks in London right now for business. I came upon this forum by English colleagues and they also tipped the Moorfields hospital to have a look around and analyse my options in the UK and I'm also here to share my experiences from The Netherlands as well.
I've been reading on this forum for the last couple of hours and I find it very interesting so far and recognize a lot of problems off course.

I am 27 and I live in Rotterdam. The eye hospital in Roterdam (which should be one of the best in Holland) has diagnosed KC a couple of months ago after deteriorating vision in my left eye and a horrific uveitis infection in my right eye. For the moment only my left eye is affected by KC, god thanks!
By the way I have worn soft toric contact lensens for the last 10 years.

Lately I have first tried RGP lenses but I have always been quite intolerant to lenses (red eyes, drieness, especially inner part gets red) so now I have the same RGP lens for my left eye as piggyback system. Right eye still 'normal' soft toric lens. However vision with piggy back system in left eye or RGP immediately is just 70% and on good days maybe 80%. And still my eye gets red quite easily with piggyback system, I even have some eye lubrificating drops for approximately three times a day. I work in IT and sit behind a computer screen for most of the day unfortunately. But I love my job....
I feel the the lenses all day which is quite uncomfortable according to me, with a lot of eye rubbing...which is not good with KC ???

I'm having an appointment in 2 weeks to get a scleral lens fitted. Hopefully this is better? Maybe some polishing of the RGP ridge might be a solution to the redness but I doubt it.

I've proposed cross linking to stabilize the progression in Rotterdam but the cornea specialist still sees it is a 'grey area' so no option for the moment. Lasering is out of the question in Rotterdam which I can understand with the thin cornea. How is this in the UK, only in private clinics or is cross linking also available in Moorfields hospital?

But I have the feeling the vision deteriorates quite fast in my left eye as I was able to wear normal soft toric lenses in this eye like 3 months ago with reaonable good vision. This is out of the question right now and without any lens my vision is already dramatic. Anybody experienced such a fast deterioration in just a couple of months?

I have asked for a second opinion in the hospital of Leiden in The Netherlands as well, but this is only on the 9th of august....

For the moment I pray my right eye keeps inaffected and I'm looking forward to any suggestions you people might have in the UK.

Regards and best wishes to all your eyes,

Ronald van den Brink

Posted: Mon 28 May 2007 5:18 pm
by donna
Hi,i was diagnosed late last year and my left eye deteriorated rapidly, in January this year I was refered to the local hospital and from there sent to an optician who specializes in fitting lenses for people with KC. I am now wearing Rose K lenses in both eyes and so far its going well!
I dont know very much about the different types of lenses and treatments yet, I am still new to all this. You will get some excellent advice from the others though, I do ! :D
I do know that spending a long time using a computer will make your eyes sore, you should make sure you take regular breaks and drink lots of water.

Posted: Mon 28 May 2007 6:34 pm
by mike scott
Hi Ronald

Welcome to the forum, its always good to have an international member join us , we have many here.

With regards to laser surgery/treatment , it is my understanding that this option for people with KC is a definate NO the whole world over.

No matter what stage KC is at , the cornea has usually started to thin and lasering thins it further so could actually be rather dangerous for us.

Very best wishes to you


Posted: Mon 28 May 2007 6:36 pm
by rosemary johnson
Goede middag, Ronald!
Your fast-developing KC sounds not unlike mmine. I went to the opticians for an eye test and to get new gspectaclees. By the time the spectacles came, they didn't seem any better than the odld ones. By the time I'd been to several hjospital apointments and been referred to get contact lenses, I'd given up wearing the specs as they didn't make things any better than not wearing them.
I hope the sclerals are more comfortable foor you. I've worn sclerals right from the start and generally got on fine with them. OK, not quite always, particularly not in the hay fever season! I think it is because the edges are so far under the eyelid and out of the way of the more sensitive central area. They also don't catch on the eyelids when I blick.

Posted: Mon 28 May 2007 8:28 pm
by Pat A
Hi Ronald

My KC was (apparently) relatively stable for many years - so stable that it went undiagnosed despite my specs prescription constantly changing and not giving me the clarity of vision I had hoped for!

But in the last 2 years it has had it's foot hard on the accelerator pedal particularly in my left eye. I've gone from wearing glasses, through to soft toric lenses to to needing RGPs in a very short space of time. I'm not sure when it's going to start decelerating!

Piggy backing in my left is giving me tolerable vision at the moment but my eyes do get very dry, probably though the reduced oxygen levels as a result of two sets of lens, coupled with a poor tear production. I'm told that you need to keep your blink rate up as high as possible to help overcome this but using a computer makes your blink rate lower as you tend to "stare" at the screen. So very regular breaks away from the screen are essential. And I can feel my lenses all the time too - they don't hurt but are quite uncomfortable and irritating at times. I'm at Moorfields this week to get the right eye fitted with RGP/piggy back lens as well so it'll be two dry eyes soon!

But wish you the best of luck in getting things sorted successfully - do let us know how you get on.

Posted: Tue 29 May 2007 7:48 am
by GarethB
Hi Ronald,

Welcome to te forum.

Many people here complain of dry sore eyes after workin with computers, but then when I ask around work so do many with 'normal' vision. This is because as you look at a computer screen for extended periods your blink rate goes down so your eyes start to dry out. The body compensates as best it can and your eyes go red as the blood tries to give the eye the oxygen it needs.

English Health and Safety recomendation are regular short breaks. I have a timer set for 30 minutes after which time I get up and put things in the post, collect things from the printer, talk to people rather than send an e-mail to the person in the next office.

Air conditioning does not help, so I have been allowed to sit as far from the airconditioning as possible, my computer is under my desk so only keyboard, mouse and monitor is on top so no hot air blowing towards me. Always have a glass of water next to me and a desk top humidifier.

The result of which for me now means I very rarely get dry sore red eyes from spending time at the computer.

Posted: Tue 29 May 2007 11:27 am
by Brinky
Hi all,

Thanks for your answers and tips so far, I really appreciate that! Some of you even speak a little bit of dutch, nice! I'll keep you informed with the updates....

Posted: Tue 29 May 2007 12:58 pm
by Andrew MacLean
Hey, Brinky, onthaal aan het forum!

All the best


Posted: Tue 29 May 2007 2:47 pm
by Pat A

Show off! :twisted:

Posted: Tue 29 May 2007 9:00 pm
by rosemary johnson
Brinky wrote:Hi all,

Thanks for your answers and tips so far, I really appreciate that! Some of you even speak a little bit of dutch, nice! I'll keep you informed with the updates....

I once spent 4 years as "Penningeester" of an internationall Crhristian coordinating committee officially registered as a Dutch "veereniging zonder onderneming". SO I (used to) know bits of Dutch about
internationale overschrivingsformulier"
kennisgegevings can een betaling uit het buitenland
and those wonderful "vloppentop" machines.

(for non-Dutch readers: I was treasurer of a Dutch "non-commercial company" and learned words like "international money transfer for", "bank statements" "notification of a payment from aborad" and the equivalent of "hole in the wall" machines.
WIth apologies for spelling all of those wrong - it was a few years ago now!