Clueless newcomer!!

[samuel]

Hi everyone i was told yesterday by my optician that i have Keratoconus.
Then gave me the most unpleasent eye exam I have ever had, by putting some lenses on my eyes.
I have never had this done before and it was horrible, especialy with the eye drops that He used.
What puzzled me was i have been through lots of glasses and had LOADS of eye exams in the past six years.
This condtion was never see before, and the speed that my vision has got worse even in the past six months really scared me.
My eye sight was bad enough before, the eye that can see "ok" has Keratoconus, as for the other i couldn't read a billboard from six feet away.
I did some reaserch on Keratoconus, and found I have had it for a long time, but i have been putting the symptoms down to tiredness, headaches, long working hours, its only in the past few months that the glare, double image, reading trouble is effecting my life.
My way forward is hard lenses I've been told, they cost hundreds of pounds! and are going to be unpleasent!
The lenses should come in next week and i will shown how to use them.
If there is anyone that can give me advice, cos i hate the thought of things on my eyes!, will it hurt? will they fall out?
I am totally clueless!!
Thank you reading that hopefully it will get sorted soon!

Samuel

[Karl R]

Hi Samuel and welcome.

Your situation sounds similar to mine. I have worn glasses now for over 20 years and have severe astigmatism in both eyes.

My constant changing of prescriptions was put down to the astigmatism until April 2005 when I had a change within 4 weeks of a test. The optician I saw at that time mentioned KC and sent a letter to my GP for a referral. Mild KC was diagnosed in both eyes November 2005.

Astigmatism can mask the symptoms of KC and if the KC is mild then it is easy to miss on a normal exam. You should get a referral to your local eye centre for confirmation of diagnosis and then to discuss the different treatment options.

[Andrew MacLean]

Samuel

Welcome to the forum

Did you say that it was an optician that diagnosed your condition. Have you been referred to an ophthalmologist (eye doctor)?

If you have not been referred to a hospital eye clinic, ask your GP for a referral now. Lenses are expensive, but the NHS does offer a heavy subsidy for lenses prescribed for Keratoconus.

Andrew

[GarethB]

Samuel

What you probably had was what we call sub-clinical KC in that only now has it developed to a point that the KC can be seen. If the optom had a topography machine it may have been diagnosed sooner, but few optoms have these because they are very expensive.

There is also the situation which was discussed at our confrence in that during optom training few get to see cases of KC so not always profecciant at spotting the condition. Even at my hospital, few volunteer to let trainee optometrists look at their eyes, me though, will let anyone have a look if it will help the greater KC population.

Mild cases can be treated with glasses and some optoms are very quick to go down the contact lens route. As Andrew says, get your optom to write a letter to your GP so you can get a refferal to the hospital to ensure you are in the system.

There are pro's and cons to beeing treated under the NHS and by your local optom, if you have a good optom the pro's and cons pretty much balance out.

There are many types of contact lens to manage KC so just because the first trial was uncomfortable does not mean the rest will be, plus having been given to news you have KC would make you a bit stressed and sensitive to what was happening too.

Go to the home page and the contact details and get in touch with Anne Keplatz, she will send you out loads of useful information about KC, its management and so on.

[Eddie S]

Hi Samuel,

Welcome to the site!

I can also relate to your experience. I had been going to high street opticians for a while and it was only when I decided to use a different one (can't remember why) that my KC was picked up. I'd been in the chair about 10 minutes and I was told they couldnt help me, I had to go to see a specialist.

In addition to what Andrew has said, if you get yourself into the NHS system you're looking at about £101 per pair of lenses and they wont charge you until you've got a pair that fit you correctly. Because of the irregular shape of the cornea, KC can be hard to fit lenses for but when you do get the right pair the results are often very good. I'm useless without mine, even wearing a pair of glasses but with my lenses in I can continue a normal life. I drive, partake in sport and can read billboards

Its a lot to take in first off but it does get easier - testament to that I guess is all the happy (slightly bonkers) people on this site!!

Ed

[donna]

Hiya, I found out I had KC nearly a year ago and within 3 months it had progressed to the point where they said they could no longer help me and wrote to my gp, she refered me to the eye hospital and they refered me to a lens fitter who runs a clinic at the hospital.
In the 3 months from finding out I had KC to the referal my sight rapidly vanished. I got some lenses, Rose K, and get excellent vision with them. I had a problem with protein build up but thats sorted now, I got my lenses in May this year and am hopeless without them.
I think the stress of the appointment prob contributed to your discomfort, my optom used anasthetic drops so my 1st fitting wasnt too comfortable, the lenses do take some getting to used to but its worth it when you consider the excellent vision you can get from wearing them.
Good luck!

[samuel]

Cheers for the info!
I haven't been referred anywhere it was not mentioned.
i think i have a plan now, get on to my GP,see a specilalist, try to get on the hospital list? is that right?

It was an optician that diagnosed the condition. he then mentioned that most optictians would have just sent me to the hospital!!! apparently! ..... but he will take me on and get me sorted. (nice)

There is soo much to know about this i have a million questions!
My main questions (1)what are the chances that the lenses will be bad to use and i wont be comfortable?
(2) how long can i wear them at any one time?
I have heard loads of horror stories about peoples contacts especially the 'hard' lenses.
Well its all too confusing
Getting the time sit by the computer is hard enough!!
Thanks for the info and im glad that there are people willing to share their experience! Cheers guys+gals keep it coming!!
I like the signatures!!

[GarethB]

Everyones experience is different in that most get told they have KC by a highstreet optometrist that does not kow how to help them. The there are those who can help and some hospitals contract out lens fitting to these optoms.

There are good highstreet optom who can fit KC patients with lenses, but fitting kits are expensive and highstreet optoms rarely have the variety of lens fitting kits a hospital has, the experience or can afford to tie up the consulting room for the time it can take to fit a lens to a KC eye. When I had my lenses fitted at the hospital, they said I was at the mroe extreme end of fitting because I had KC and grafted corneas. The lens fittnig took three hours in total to get something we were happy with. A highstreet optician could have had 12 paying customers in that time. No harm being fitted by your highstreet optom, but still worth being in the hospital system too. It can take 3 - 6 months to be seen by a specialist, but once in the system you can get seen quite quickly.

Most people get fitted with RGP lenses first, but depending on the severity of your KC, there are a couple of soft lenses specialy designed for KC and more coming along soon.

RGP's are uncomfortable to start with, after all you are putting a large pice of plastic in your eye. Most people do adapt well to them, this forum is starting to get a more representative sample of the KC population, but you will find from the forum most people who post are having problems with the usual treatment options so come here for support.

As for how long can you wear the lenses, well how long is a piece of string?

If you take to the lenses well like most a good 12 hours is reasonable, but take heed of what your eyes feel like when wearing lenses. Many have enjoyed good vision and worn lenses only taking them out to sleep and then one day they put lenses in to find the unbearable for days or weeks becuase they have overworn the lenses and caused irritation to the cornea.

Practically all of us who have worn lenses for a long time have been there and done it and paid the price.

When you get lenses, be sensible about the length of time you wear them and how you look after them.

[Neil H]

Samuel

The idea of getting a referal from you GP to the hospital quickly is great from my experiance.

My optician picked up i had KC when i was 11 (now 31) and all they did get me to see the contact lens guy that they had there. He prescribed badly fitting lenses that kept coming out have scarred my eyes making them worse. Now i go to the contact lens clinic at the hospital, have really good fitting lenses and 2 years ago had a partial graft in my right eye. I'm sure the contact lens guy at the opticians was doing his best, but i'm pretty sure he out of his depth as i got the the opinion he hadn't seen anyone as bad as me.

I wish i'd found out about this site years ago when i first started with KC, but only had it mentioned at my latest conact lens appointment at the hospital a few weeks ago. I've had KC for 20 years and have never met anyone with the same condition. It would have helped to have been able to ask questions from other people with the same problem even if was only before my graft.

Ask as many quetions and you need to.

Neil

[Andrew MacLean]

Neil

Welcome to the forum.

Like you, my referral to the hospital by my GP was exemplary. Which hospital do you attend?

All the best

Andrew