UK Keratoconus Self-Help and Support Association

Hello my name is David Feijoo.I developed Keratoconus
in my left eye back in October 2004.I have just
visited Moorfields Outpatients.I have tried out both
corneal and scerotal hard lens.

They did improve my vision a bit but it confused my
right eye and my vision was doubled and also all over
the place.They said at Moorfields that it could take
3-4months for both eye to be working together again
and the vision to be normal with the lens in the left
eye.Also I found it very very uncomfortable and
painful to have the len in.Have you had any of theses
lens fitted? if so how did you get on with them? did
you get use to having the lens in your eye.

I'm not sure weather to go back for a fitting for the
corneal or scerotal lenses.I don't know what to do
now,they also said about the cornea transplant but I
really am put off by this.But do you know if many
people go ahead with the transplant if they only have
developed the keratoconus in one eye like myself?

The doctor said I could try without the len and just
rely on my good eye(the right one).Do you know know if
this has happen to anyone else? Or has it happen to
you?

I would be most grateful if anyone has any of the answers to my questions above,or has any advice to give to people who suffer from Keratoconus like myself.
My e-mail address is david.feijoo@talk21.com

Many Thanks,

David

Hi David,

The graft option is not as bad as most think, but most here (including me who has had two grafts) would advise this as a last option.

It appears quite common that those with KC have sensitive eyes and some can overcome lens problems just by changing solutions and finding what is best. This worked for my RGP lenses. Some need further trial fittings and the increase for some is quite quick, others, it takes months to get decent wear time. It took me about 2 months to achieve eight hours wear time! Others never achieve this even with scleral lenses while you will find many here who swear by them.

I know this is vague, but it is to demonstrate how varied our condition is. Frustrating I know, however, many will give their coping statergies and with luck you will find some that may help.

On the plus side, one the brain gets used to having corrected vision in the bad eye, it can easily adapt to changes in sight. To see long enough to work, I come to work sighted in one eye, half way through the morning I put my other lens in and have binocular vision. By mid afternoon the first lens comes out and I am back to one eye, but not the same as the morning. The evening is then a blur! It only takes me 20 - 30 minutes for the adjustment each time and that inclueds the insertion or removal of a lens.

Should you choose the graft route, you may have the same issues as your brain gets used to seeing out of the bad eye again. I graft is generally considerd a succes if there are no rejection issues which Iunderstand is rare for corneas. However you may well still need glasses to get the best vision, a graft is not a cure but for many a last resort form of long term management.

As far as KC in one eye, no two cases are a like, I think it is more common to have KC in both eyes but not always to the same degree. Having said that amongst KC people, the condition in one eye would not be considerd too unusual.

Hope some of this helps.

Gareth

Hello David

They seem to have been through quite a few options with you. Was this just a discussion in order to make you aware what may happen next or are you being offered these options and must choose which to take?

From personal experience when I first found out it was quite a shock and I did not take in everything they said, nor did my husband who was with me. They gave me a leaflet however it was quite basic and short.

Luckily it was just a tricky glasses prescription for me initially so this gave me some time to look into this KC thing.
A couple of years later when I needed to go back to the hospital as I felt the glasses no longer helped I moved to the next stage, which I was told was RGP contact lenses. It was explained to me that RGP or hard contacts were my only next option as they would correct the shape of the eye and also with a prescription on would make sight possible. It was also explained that contacts were not suitable for all and not without their little traumas.
For me RGP's did not work however this took 9 months to be decided. I was visiting the hospital every 4 weeks or so and had several RGP lenses over this time that I was asked to trial and wear for different lengths of time. I would not say this was painful however definately uncomfortable at first and then a funny feeling afterwards when I had them in, once I had initiall got used to them.

The next step for me was scleral lenses and after sevaral months of fitting and waiting for them to be made these were easier to get used to for me, anyway.
I had good vision from them for 12 months and then needed a refit which again took some time.
It has not been without difficulties and wearing time is sometimes limited and I do have to juggle lens wearing for when I need to see, one lens in at a time etc.

When is your next appointment?

Do you have someone who can go with you? and I would suggest you start to make yourself a list of questions you may like to ask.

Don't give up though, the hospital is there to help and if it is that your KC is very advanced maybe it is a graft that is needed. I can only suggest you listen to what the professionals advise and then seek another opinion if you feel the need to do so.

best wishes, Susan

Hi David

Well seems you have been going through a fair bit right now but I guess you have posted at the right place.

I am some what surprised thet spoke about Grafts to you....as you have not had the condition that long....and I personally have not heard of anyone needing grafts for at least 5 years post diagnosis....unless ofcourse its extremely aggressive.

From what you have said, I would definately pursue the lens. I do understand what you mean about the lens and the imbalance...I had that a fair bit with my sclerals but it subsided after about a week....its just the brain getting used to it and balancing out the vision.

With regards to using one lens....I have done that for the past 18 months...where I only used my other "good" eye with a scleral....its not as bad as one initially thinks.....but again it depends on how you are and how long yu can get used to it. But again, from the information you have given I would try the lens fitting....if you feel uncomfortable spea k to them and ask them what other lens options they have.......corneal and sclerals are one a few....there are many others that may help you.....but do not give up.......at first its hard work but one yu have the lens....its a done deal........until the lens needs a refit.........

Grafts wise.....this I wouldnt recommend unless its a very last resort.......and I mean extremely last resort......and you have no other potential options....but again that an unqualified opinion and more experience based.

But dpnt give up mate...........I would love to swap places with your level of KC right now lol..as mad as that sounds..........but you are at an early stage and hopefully if you sort this initial lens fit out you will be ok.......

Jay