Different stages of KC

[kaz]

I have often heard or read of people referring to different stages of KC, however I don't know what they mean. I was hoping someone could fill me in on how many stages there are and what the criteria is for each stage.

kaz

[piper]

kaz, if there are specific, named phases, I don't know them......but I do know that for years I saw double, then worse, then MANY MANY images.....and eventually my corneas got so steep that no one could grind a contact lens to fit over them, like the ends of an American football....and regular glasses became impossible to wear. At the end, I was seeing a very real, and COUNTABLE 77-images, spread out very widely in each individual eye, and a different spread in each eye.....

So, i went from mildly disrupted vision, to badly disrupted vision to untreatable vision and virtual (corneal) blindness, and finally surgical correction, via a DALK in each eye, new acrylic lenses to solve the cataracts that popped up after surgery.

Hope this helps. At what point do you feel you are now?

Amost everyone here can tell you their own story, we are all in this together.

Piper

[GarethB]

Kaz,

I think the terms are quite relative.

You have mild, moderate and sever.

Depending on how you can tolerate lenses or how your life is affected mild can stop you doing nearly all of what you did before.

Whereas a severe case where lenses are well tolerated and can live life normally there is no problems.

KC is so different between each person we all cope in different ways.

I ignore these terms and measure severity by how it impacts on my life and basically it only has an impact on my driving. I have to wear lenses for that.

[Matthew_]

Gareth makes an excellent point, I think. Its the severity of the KC and how it affects you.

There is still a lot of mystery over KC and I think there is more going on in many cases than immediately obvious by measuring the corneal surface. In some cases, there are problems below the surface. In any event, being told you have mild KC is not really that helpful if you cannot drive or function: that's not mild!

I think Gareth already said but the mildest form is when KC is sub-clinical which is a rather bemusing label. I think it means you have some symptoms but it is not easily measured. Normally you can get by with soft contacts or glasses. My consultant told me that he couldn't really see the KC in my right eye but the fact that wearing lenses stopped the double images was good enough for him to diagnose KC! (Things have moved on since then). After this you are the mild to severe spectrum. I do not know what constitutes each of these categories or if it a subjective scale?

[Matthew_]

When I say things have moved on, I mean my right eye has got worse; not the diagnosis techniques, this was only last year.

[kaz]

Piper at the moment without spectacles I cant read anything on my pc. With my specs on I still don't get adequate vision, however when vision is not crucial I prefer to have the comfort of my specs. Night vision is bad especially around lights where I get halos and glare from car head lamps. I am still waiting to be fitted with RGP's maybe they will do the trick, but still got another 2 month wait so struggling till then!

In terms of how it has affected my life, quite significantly. Last year I was studying at Loughborough uni commuting from Leicester, had to give up my scholarship and make the move back to Leicester to study as I could no longer drive. Seeing as I have not yet tried RGP's not sure what category I would come under.

I had another question. Is the recovery time quicker when having a DALK compared to a PK seeing as it is not a full transplant?

[GarethB]

Kaz,

I don't work at the Uni, but at the back of it on Holywell Park

Recovery for PK's appear to be 6 to 12 months, sometimes longer and for a DALK 12 to 18 months sometimes longer.

This is the time before all stitches are removed. Before you have stable vision that can be corrected can be anywhere between 3 to 18 months or more.

At the AGM in March this year we were told the overall outcome was better with a PK than a DALK, but DALK had improved over the years that the outcome visually is nearly comparable between the two.

Unfortunatly as with many KC realted things the question is like how long is a piece of string?

The other thing to remember is that only 5 - 10% of us with KC will ever reach the graft stage, even fewer to need a graft in each eye. Technology has mooved on that the time for a graft has been pushed further back in many cases.

KC can stabilise too, mine has been static for about 3 years now.

Hope this helps.

[Lynn White]

The problem with trying to categorise KC is that there is a difference between clinical perceptions and subjective perceptions. If your life is disrupted as in the case with Kaz then that is severe yet the KC clinically may be "mild" from a doctors point of view.

Also at the moment technology is leaping ahead of the normal techniques used to "label" KC. The use of corneal topography means that it can be diagnosed at much earlier stages than was possible before. KC also can progress quickly or very slowly or indeed stop altogether, so its a very tricky beast to put into pigeon holes.

Classically, KC is classified based on how steep the cornea is or it can be classified by shape. However, with the use of corneal topography, these terms are now less important than they were.

Wikipedia gives a good description of the current classification here

http://en.wikipedia.org/wiki/Keratoconus

[Emma J]

I am severe, but I believe lifes what u make it. It is difficult with KC, but u just have to function as best u can with the vision u have. Its the most frustrating thing in the world when u lose/break a lenses and are housebound until u can source a new one, but I just enjoy the break from work!! I think i suffered more with mild KC, now I am severe, my vision has been corrected 100 times better than the optician could do when I had mild symptoms!