1st post a little help

[al3cook]

Hi there
I have had "KC" since i was about 10-11 im not 25
I am currently wearing the hard contact lens, which are tight (i have bloodshot eyes everytime i have them in)
Im currently being dealt with at Kings college Hosp in London.
My specialist seems very relaxed about me. I have only been reading about the surgery options and i was wondering what are the risks in doing it?

Thank you in advance

Alex

[Andrew MacLean]

al3cook

Welcome to the forum. You say that you have uncomfortable rgp lenses, but I wonder whether you have tried any of the other lenses that are available for people with keratoconus? My all time favourite was a scleral lens, but now I am back to rgp wear that is, for me, comfortable enough.

What sort of surgical option are you considering? Ths list gets longer and longer:

INTACS available on the NHS
ARK not available on the NHS, so far as I know.
CXL not widely available on the NHS

Grafts (two sorts: PK and DALK) Available on the NHS, I have had one of each of these procedures, and would advise against going ahead until the clinical indicators are right. When the time comes, however, I'd advocate going ahead.

Every good wish

Andrew

[Anne Klepacz]

Hi al3cook
Does your specialist know that your eyes are bloodshot when you have your lenses in? If lenses are too tight and not letting enough oxygen in, this can damage the cornea. As Andrew says, there are a number of lens options these days. As well as the scleral lenses he mentions, there are semi sclerals, special soft lenses for KC, hybrid lenses (part soft, part rigid) and the piggy backing option (wearing a soft lens under the hard one). Or it may be that the fit of your rigid lenses needs adjusting so that they aren't so tight. Do talk to your contact lens fitter about what might be possible for you.
All the best
Anne

[Accuvision Optom]

Hi Alex,

I would suggest your first priority is to have better fitting, more comfortable lenses. There are many different types, so although it takes time and effort for both you and your clinician, it's definitely worth pursuing.

As far as surgery goes, you need to be assessed to find out which procedure may benefit you.

Corneal collagen cross-linking has been developed to stop/slow progression of keratoconus. You would still need contact lenses to correct vision afterwards. For patients with mild keratoconus laser treatment can be performed to improve corneal shape and therefore vision. With any surgical procedure the major concern is post operative infection, so steps must be taken to minimise this. The cross-linking procedure itself carries very little risk. The riboflavin used is a naturally occurring vitamin so it is not toxic to the eye and the UV light used is a controlled dose so that it does not penetrate beyond the cornea.

Intacs are corneal implants designed to improve the shape by stretching/flattening the cone, to improve vision. Complicatons can occur with the procedure itself as it is difficult to insert the implants.

A corneal graft is a major procedure, which can rid the eye of the keratoconus itself. Most patients do very well in the long term however, the recovery is very slow and unfortunately there is always a risk of rejection. In many cases contact lenses are still required for functional vision.

This is a very brief summary of the most common surgical procedures. As you can see each has it's own pros and cons. Treatment options need to be assessed on an individual basis because the severity and stability of the keratoconus varies from eye to eye and from patient to patient. Treatment should only be embarked upon for the right reasons and if the potential benefits outweigh the risks. What is motivating you to consider surgery?

Hope the information is useful,

All the best with your research.

Anthony
Accuvision

[Lynn White]

Hi Alex

Anthony has pretty well outlined what is available. I would just like to add ...no-one can explain the risks for you in particular without seeing you directly to assess you, as risks depend very much on the individual situation. If you are thinking of surgery because your lenses are uncomfortable, then you need really to investigate all the contact lens types available before deciding on surgical procedures.

Lynn

[al3cook]

Thank you for so much advice.

I think i am due to get some scleral lens these are the "big" contacts right? which im wondering how the hell im going to get those in my eyes! cos i can bearly get the hard contacts i have now in.

Im a bit fed up of my Specialist im pretty sure he is aware that my eyes are bloodshot (as everytime i go for an appointment there red raw)
Im only thinking of surgical options as im quite fed up (i know i havent been suffering that long) my office conditions make it worse and due to the condition being quite unknown (by all the people at work i have had to explain it too)
Is Keratoconus classed as a Disability? Could i get a transfer due to the poor conditions in my off (no windows, very bad air con poor lighting. No its not prison!)

Alex

[Andrew MacLean]

Alex

You will probably find the sclerals easier to insert; they are much easier to handle than standard RGP corneals. I loved my scleral lens and would still be wearing it now if other things had not intervened.

All the best

Andrew

[Anne Klepacz]

Alex
On the work front, you'll find two leaflets you can download on the home page of this website www.keratoconus-group.org.uk
One is Keratoconus at Work, which is useful to give to your employer. The other, Keratoconus- How the Law can help you at work, gives information about your rights at work. Through Access to Work (described in the leaflets) you can get a workplace assessment and recommendations of how things could be improved for you. That might mean a transfer within the company if 'reasonable adjustments' can't be made to your existing work station.
I hope the scleral lenses improve things for you.
Anne