UK Keratoconus Self-Help and Support Association

Hello to anyone reading,

My names Brad and i'm a 35 year old man living in Blackpool, i've had KC for about 5 years now, it started in my left eye, and i was diagnosed and reffered to the local specilaist - he treated me by me going to the opticians every month and he kept giving me a big thick lens that did no good and offered no further help, i kept going for about 18 months but tbh got fed up of the lack of progress as my right eye vision was perfect it wasn't a problem, i'm now getting KC bad in the right eye too, i presume i should go back to my GP and get things sorted, but i'm worried i'll get sent to the same optometrist and the issue will continue,

I'm after the best course of action to try and get my sight back to normal as soon as possible, any sensible suggestions would be greatly appreciated, i.e Best course of action.


Thanks

Hello Brad and welcome to the forum!
There has been a lot of progress in the last few years in developing lenses for keratoconus, so there are various options to try as well as the standard corneal rigid lenses. There are special soft lenses for KC such as Kerasoft, hybrid lenses (hard centre and soft skirt) such as Synergeyes, sceral and semi scleral lenses, and piggy backing (wearing a soft lens under a hard one). We're all different, so it's a question of finding what works best for the individual. And there are other options such as Intacs and crosslinking. If you e-mail your postal address to anne@keratoconus-group.org.uk I'll send you the DVD of our 2007 conference which covered all the latest options. So do go back to your GP and ask to be referred to a specialist again. Hopefully you'll get on better this time round.
Anne

Hello Squinter

just wanted to add my own 'welcome'.

Hi Squinter,

I am a little confused by you being sent to see an optician every month and being prescribed glasses as this is certainly not a a conventional treatment system for keratoconus - it sounds more like treatment for squint and as your online name is squinter that got me thinking?

Can you tell me more about what happened at your diagnosis and what, exactly, the optician was trying to achieve?

Lynn

Thank you for answering my query and for the welcome, It;s great to find somewhere i can get some good advixe.

In response to the last post , I wasn't prescribed Glasses i think it was firstly a soft lens and then Gas permeab;e - But neither worked, I would put them in my eye, I'd explain they were doing nothing and go back two weeks later, for a check up, I'd tell him the lens had no effect, and his stock reply was these things ake time to get right !! After following this apalling regime for almost a year i gave up as previously stated i could see fine with my right, But now the KC is affecting this.

The name squinter - Is definging everything i'm doing currently to see

Is the procedure normal or does it seem i have had a bad optometrist ? I was reffered to him by the hospital.

I'll go back to the GP and start the process again, at least if i put two fingers at the side of my head neaqr my eye i can see not too bad

Hi Brad,

Yes, it does take time to get a pair of lenses sorted. I'm currently in the process of having new lenses prescribed and the pair from my last appointment are not giving me the sight I expected. I've had four appointments since April and my next is in February. Hopefully this will be the final tweak to the lens prescription.

When you kept going back to the optician was the lens being changed or modified? Or was the optician expecting you to get used to wearing the same lens? - Which does take time. You really need to see someone who fits KC eyes frequently and is up to the challenge. The optician I saw 20 years ago (when I first was told I had an irregular astigmatism) spent ages sorting the lens prescription. (You should have seen the queue in the waiting room after my appointment!). The lenses were often sent back to the lab for minor mods. Once sorted - the process took over six months I wore those same lenses (I had two pairs) for the next 5 or 6 years. When the whole process started again when I moved house.

There will be lenses for you. Go back to the GP and ask to be referred back to the hospital; or if you are still on the hospital's books ask for another appointment.

Good Luck,

Lia

Hi. I'm quite new here too and read your posts with interest. Heck, sounds like you've had a bit of a bad job on with your opts!! Good luck from now though. Seems like sometimes we have to "push" a bit doesn't it? Take care.

Yes each time new lenses were prescribed, or sent back to the lab !!

Maybe the main delay was the turnaround time which took 2-3 weeks, but i just couldn't get any decebt vision, it's driving me crazy currently, I still haven't phoned the GP so i'm going to ring short

But each time i returned there was no change at all - I know my sight is there i just need it unleashing.

Secondly the optician is saw is apparently the KC specilaist for Blackpool, But never mentioned many options, so i'm now wondering to what extent his experiences were.

Right phoning GP now before i put it off again,

i am in preston and got referred back to an opticians for cl fitting. The opticians certainly has branches in preston and st annes and all the staff i have dealt wi understand KC, and the cl fitter i see knows all the options for cl. She spends a couple of days per week in each shop. The downside is the time delay in gettingnew lenses but it is still quicker than hospital appointments from what i understand. She has fitting sets of synergeyes, soclear, sceral lenses though admits she is still learning in how to fit some of them - that was last summer. I will pm you the name of the firm i see funded thru the nhs, as cant name them in open forum.

Thanks for that Liz - sounds very promising.

Well just by registering i've now been to the GP and been reffered back to the hospital - As to be honest i really cannot afford the treatment privately.

So if i can i'll keep updating my progress on this thread and hopefully it may asssit someone else in a similar situation.

just as a side note current ly my eyes feel like this

I'll update as things progress