advice needed on which treatment to have

[mancity31]

Hi i was diagnosed with KC 8 year ago until then i was just told i was short sighted .I have been to the eye hospital at Liverpool every year until a year ago and was told it was not getting any worse so to see how i go .I am wearing glasses but would really prefer to find a better way to help . I have tried the hard contact lenses and found them unbearable .I am 32 now and definately do not want to be wearing glasses for the rest of my life and also glasses are hard work to wear with the career im in .I ve heard a bit about laser treatment to correct it but would prefer a different option .Thanks for any advice or help anyone can offer

[Anne Klepacz]

Hi and welcome to the forum.
Quite honestly, most people on this forum would probably love to have vision good enough to be corrected with glasses and KC that stayed stable for 8 years! But one option you could try is the new special soft lenses that have been developed for KC in the last few years - examples are Kerasoft3, KerasoftIC or Acuity SoftK lenses. You'd probably find them more comfortable than the hard corneal lenses and they might correct your sight as well or better than glasses.
Good luck
Anne

[mancity31]

Hi and thanks my vision is good with glasses but i do still get eye strain quite often but a lot better than the migraines i used to get daily before it was discovered i have KC .I will ask my optician tomorrow about the soft contacts i do struggle at times wearing glasses to drive .

[Lizb]

ask about the softer lenses options you may get on with them.

there are two other options, one is crosslinking and the other is intacs. There is information on here about the procedures and criteria etc. I understand that one of the liverpool hospitals does the Intacs procedure, however Crosslinking is still at trial stage - available privately and at limited NHS hospitals.

[mancity31]

Hi and thanks i think im going to give the softer contacts a try .The only thing that worries me is about the fact that some people say contacts can make the condition worse . My optician is a branch of specsavers and they no longer deal with any other types of contacts than the basic ones so now trying to find a local stockist of kerasoft or the other two types

[Lizb]

most people with KC in the UK get their CL supplied through their hospital clinic - either the hospital has their own CL fitting specialist or they outsource CL fitting for KC. There is a fee to pay (somewhere in the region of £50-55 per lens per eye once you have found a lens that fits) for the NHS fittnig but when the cost of some of the more specialist lenses is a lot more than this it works.

Have a chat with your hospital clinic and see what they say about CL fitting and which lenses they stock.

[mancity31]

Thanks i ve spoken to my optician and have been told to see my doctor to get refered to the eye hospital again who will then refer me back to the optician for treatment .It seems a bit silly and also having to go all the way back st pauls eye hopsital at liverpool to just get sent back to my optician .The optician didnt seem to keen on the soft contacts option .I ve read about INTACS but the recovery time worries me a bit

[Lynn White]

Hi there...

You have to be referred back and forth to get into the system for authorisation for NHS lenses. In order for you to get these, the hospital has to fit you themselves OR refer you to a practitioner who is an "approved contractor" for the PCT. However, you first have to be referred to the hospital by the GP before they can do that.

Many practitioners have their own preferred contact lens type for keratoconus and the practitioner you are consulting may not be expert in specialised soft lens fitting. You may find another practice that does specialise in soft lenses but not in sclerals and yet another that tends to only fit Synergeyes or Rose K etc etc. Also, not all practices can redeem the Hospital voucher - this is at the discretion of the Hospital/PCT.

As in all health care - you have more choice privately but it costs more!

Lynn

[Graeme Stevenson]

There are some fantastic soft lenses available these days. The specific type for you depends on the degree of your KC,amount of astigmatism and the shape of yyour cornea.
As Lynn says prices vary considerably depending on the specific lens fitted and also wheather it is done privately or through the hospital eye service .
Remember of course there is the list of KC friendly opticians on this website .