Quicktopic posts: Jan 2002

[John Sams]

Hi,
I have recently been told by my optician that I have keratoconus, and am basically wondering what to do next. He told me to get some specialist contact lenses (as his practice does not supply them), but did not say how to go about it. Do I approach my GP, and get referred to somewhere, go private, contact a hospital etc.

As you can probably tell I'm at a bit of a loose end.

FYI, I live in Liverpool, so any local recommendations appreciated.

Cheers,

John....

[Emma]

Hi John

I just read your message regarding what to do next now you've found out you've got KC - firstly dont worry! I was told that I may have keracatonus by my boot's optician last November. I then went straight to my GP who referred me to a specialist, who I saw privately. He confirmed that i did have KC. He then recommended an optician who was good at fitting KC patients and I have gone from there. If you want to know anything else, I have, as i said recently been through finding out i have it and getting lenses etc, so feel free to email me:

emmafletch@yahoo.co.uk

Emma.

[John Smith]

Hi John,

My KC diagnosis started exactly like Emma's. Boots to GP to hospital consultant (went private for that) to decent optician.

[Robert Smith]

John

My experience was slightly different. To the opticians for the usual sight test - not seeing the blackboard well - to be told to see my GP - no reason given! GP takes one look at letter, claims to know nothing about eyes and sends me to the hospital. KC diagnosed by consultant. Told that it was not too bad and that I could have lenses and that eventually I would need a graft. That was nearly 30 years ago! Regular visits to hospitals and attempts (all failures) at lenses over the years - all NHS. Luckily only one eye affected. Eye did not change much till two years ago when it became very bad. Had graft 3 weeks ago and am not looking back - sight already MUCH better and, so far, little or no problems. I think that knowing that it might come to a graft for such a long time helped as it didn't come as a shock when it finally got to it.

Robert

[Ian - Oxfordshire]

Dave, John,

Thanks very much for this.

I think a combination of Eye Hospital to check that all is ok from a eye-health point of view plus local specialised optician for sometimes quicker/more convenient appointments seems a sound way to go if we have the option.

All depends on the severity of KC, financial circumstances and the willingness of an optician to go that extra mile that we are all used to our Eye Hospital's optometry departments doing.

I should state that I am more than happy with the care received from my Eye Hospital - it comes down to being able to pop in to an optician quickly from work instead of making an appointment and travelling 30 miles...

Regards
Ian

[Amanda Stigle]

Hi John Sams
I agree with the others , go to your GP first who will refere you to a Consultant Opthalmologist who can then give you the best information on your specific degree of KC and should be able to give you information on what type of lenses would be best for you.
Some opticians have a good knowledge of KC, and as Ian and others have said are a useful resource where time and convienience are concerned. There is a "locals" page on this web site which may be useful.

[John Sams]

Thanks for the responses,

Unfortunately my experience so far with my local healthcare has not been so good. My optician suspected KC a while ago, when it was a trivial annoyance, and sent a letter to my GP. My GP took a look at my eye, but couldn't see anything (unsurprisingly), but refered me to the local eye hospital. After several months wait I finally got an appointment. The person I saw at the hospital did not listen to what I told him from the optician, but only read the notes from my GP (who had not found anything). I was given a quick chart test, using a pinprick, told my optician had given me the wrong prescription, and sent packing. Given what I know now, and that my eyesight has deteriorated, I would not accept that from the hospital, but at the time I did.

I will persue the GP -> Eye hospital route again, but was wondering if there was a faster route to avoid the loop/delay again.

Any recommendations on "specialized opticians"?

With thanks,

John....

[Ian - Oxfordshire]

John,

I guess you could go private if you wish to move this forward quickly without the GP route - may be speak to Moorfields (http://www.moorfields.org.uk/private.html).

Ken Pullum is very good and I would imagine it would be quick to get an appointment if you are prepared to go private. See http://www.sclerals.com for more info.

Although Ken specialises in scleral lenses I am sure he will be able to give you a general check and make lens recommendations accordingly.

Regards
Ian

[Andrew G - Leicester]

Hello everyone.

Its great to find a site dealing with KC that is as friendly and as positive as this one. Its good to read the experiences of others and to know someone else knows exactly what you go through and how you feel.

History - diagnosed 1989 both eyes, first set of lenses for 10 years, various RGP sets since (Rose K), corneal grazes, scaring, the usual. Patient at Leicester Royal Infirmary (LRI).

Is any body aware of a surgery known as D.A.L.K.? It Similar to Alex's DLK, which sounded very successful. Please contact me andrew_grain@hotmail.com

[Tim C -Woking]

Hi everyone

I'm 35 years old and have had KC for about 10 years now - although I'm told its relatively mild at the moment.

Until recently I struggled on with my glasses, prefering the comfort to the improved vision I got with my RGP lenses.

I now find that the vision with my glasses is unsatisfactory and have switched to full time lens wearing.The problem is that I still experience a slight double vision with one eye even when wearing the lens.

Has anyone else had this problem and if so are there any suggested solutions ?

I was wondering whether a scleral lens might help.