UK Keratoconus Self-Help and Support Association

Hi, i was just wondering if there any specialists people could recommend?

Ive got a contact lens for my left eye, a keraflex lens, but the visions poor. My right eye is failing so its turning into a real struggle.

Particuarly over the last couple of weeks.

My optician has been excellent, and has done so much for me- going above and beyond -but hasnt been able to get a good result with a lens.

Im not sure what to do next, as soon im going to be in a position where i cant see properly

I live in Nottingham but I'm quite willing to travel anywhere around the country by train or coach. I just want to gt it sorted.

Sorry Liam - my only advice is based upon the severity of my KC.. I am with Moorfields Eye Hospital. I guess my judgement may be clouded by the severity but... Would I go anywhere else? No. I wonder whether maybe you might go to your GP to query a referral to specialist in NHS? Just not sure, from symptoms you describe, whether full assessment mightn't be a good idea? Sorry but good luck with whatever you decide.
Jez

Hi Liam. If I remember rightly I think that you have had CXL treatment - so I wonder if the person who did that could recommend a good optician experienced or specialising in KC. May be worth a try.

Rose wrote:Hi Liam. If I remember rightly I think that you have had CXL treatment - so I wonder if the person who did that could recommend a good optician experienced or specialising in KC. May be worth a try.

Heh, yeah I did

The optician I use now, is the one the consultant recommended and hes been fantastic. But KC isnt really his speciality (though he knows alot about it!) and we've settled on a lens that he says is as good as he thinks he can get it. Which is fair enough really, its taken ages to get this far, and hes been fantastic, but the vision isnt very good its really blurry still (despite the fact i can still get down to the 2nd bottom line of the eye chart, i cant read text on a screen and my brain wont match up what my 2 eyes are seeing!)

So really, I'd like to try something else- as I dont want to just accept really bad eyesight


I'd really like an opportunity to speak to someone who specialises in KC, and/or in fitting lenses to KC patients.

Jezzafletcher wrote:Sorry Liam - my only advice is based upon the severity of my KC.. I am with Moorfields Eye Hospital. I guess my judgement may be clouded by the severity but... Would I go anywhere else? No. I wonder whether maybe you might go to your GP to query a referral to specialist in NHS? Just not sure, from symptoms you describe, whether full assessment mightn't be a good idea? Sorry but good luck with whatever you decide.
Jez

Cheers dude.

I've been through the NHS, here in nottingham, and I had to just knock it on the head as the quality of care was so bad!

I just want things to improve, rather than get worse. Im getting by without using a contact lens, and my left eye after cxl is stable but my right eye is still carrying my eyesight. But its straining and getting worse- so I need to do something!

Liam, have you checked out the list of KC friendly optometrists on this site? www.keratoconus-group.org.uk/optoms/index.php
Anne

Anne Klepacz wrote:Liam, have you checked out the list of KC friendly optometrists on this site? http://www.keratoconus-group.org.uk/optoms/index.php
Anne

Ah thanks for that. I had seen it before, but oddly couldnt find it!

I was just curious if there were optometrists/Lens fitters who actively specialised in KC?

Well, the optoms who specialise in KC tend to work in hospital eye clinics (though some will also have a High Street practice as well). That's probably largely because fitting KC can be very time consuming, so it's not very cost effective if you're running a business! But where a hospital doesn't have its own contact lens dept, it will often have a contract with an optometrist who does specialise in KC. And there are optoms who are genuinely interested in KC and enjoy the challenge!
Anne

Ah right, I was hoping thered be specialists knocking around that you could pay to go and see. Im getting to a point now, where money doesnt matter- I just need to get a soloution of some kind.

Every time I try and go through the NHS I end up with a locum eye consultant (all 3 times) who admit they dont really deal with KC and fall back on "RGP's will fix your problems"

Then both the optometrists I've seen at the hospital as a result, have told me I'm thier first KC patient so its a learning process for them and then its 8 weeks inbetween appointments.

Which has been absoloutely no help whatsoever, so I'm reluctant to go back there as the amount of waiting time involved is just too much

I just want for things to start to improve. My left eye is totally stable thanks to KC, I just cant get a lens for it.

My right eye ghosts like mad, and things are starting to blurr, but I can read down to the last line on an eye chart in a dark room so the opticians say theres no point in a lens or glasses for that eye.

Between a rock and a hard place really.

Its why I like this forum so much, I come on here to moan all the time!

I know how you feel Liam

My eye consultant basically told me I'm stuck with contacts. He doesn't like Intacs (his personal reasons), CXL benefits people with current progression (not me), and any other procedure is too new for any long term results.

Now, RGP's and hybrid lenses all cause more ghosting that visual acuity becomes hard work. Soft lenses tend to give less ghosting (still present) but a slightly softer (very slight blurriness) acuity. Glasses give the worst vision of all. Although the tests say I'm still driver legal. Distance is blurrier with glasses.

So I guess I'm kind of stuck at the moment.