KC Treatment

[gnrpatience]

Hi,

I just come up with the following question. I asked here before if Rings or Intacts would not stop KC. So what would be the treatment for KC if nothing will stop, the treatment will be just for a better vision ?



Thanks

[GarethB]

Basically the aim of the surgery that you mention is to provide a 'better/more regular' corneal surface so making it easier to correct your vision. So if you wear contacts now, there is a good posibility you still would need to although I know some people who get good vision with glasses.

I have heard the recovery time is 6 - 18 months but this is soemthing you would need to discuss with your consultant.

[Lizb]

If you want to consider something that MAY stop KC progressing, have you looked into CXL (Cross-linking). The aim of CXL is to slow or possibly stop the progression of KC down. this is not yet available on the NHS in UK (except possibly some trials) but it is available privately. CXL has been around for around 10 years and there are lots of positives, however there are no longer term studies available as yet.

Some places/consultants recommend both CXL and Intacs as a joint option - some places/consultants will only do one after the other - some will only carry out one of the procedures.

I have just had CXL done in my left eye (two weeks ago) and my consultant and I are planning on Intacs in around 6 months time - chance to allow the CXL to work and my eye to stablise.

there is a fact sheet on here about CXL, there is also a newish website set up dedicated to people who are considering CXL or have had it done.

[gnrpatience]

Right now im not using contact lenses, my doctor recommended me first to try hybrids and if KC progress then go with intacs, but my right eye is doing all the job the left eye is the more affected, so im using just lenses in the job, i dont use them all the day cause i can see with the right eye and the left is helping but not much.

Since my doctor told me that intacs wont stop KC then i thought to try hybrids first and then intacs, i still not sure about it.

Regarding CXL theres no much here in Mexico, i went with two doctors and none of them do CXL.

I would like to know if the use of lenses, hybrids or contacts will help to stop KC or just to get a better vision.


Thanks

[Steven Williams]

I would like to know if the use of lenses, hybrids or contacts will help to stop KC or just to get a better vision.

Theres no doubt that lenses will give you improved vision and thats the quick fix solution offered.

The big issue though is what effect/influence do the lenses have on KC progression. Do they stop it by capping i? do they have no effect? or do they cause further KC progression?

I'm yet to see any top quality scientific research on this issue having waited for 26 years! The truth is out there though and its time KCers know what it is.

[Lynn White]

It was once thought that fitting rigid contact lenses would halt progression of keratoconus but in reality,this has no more effect than Ortho-K - the practice of reducing myopia through use of increasingly flatter fitting lenses. Yes, this reshapes the cornea, but only when the lenses are being worn on a regular basis. If lenses are left out, then the cornea "demoulds" and goes back to the shape it would have done if lenses had not been worn. So I have to say that contact lenses will "merely" restore vision, they will not act as a "cure" and stop progression. The only procedure that shows any promise in this area is CXL and of course, we won't know how that turns out long term until it has been around 20 -30 years.

As for research, the huge problem here is that no ethical committee will approve a study that requires people to leave out lenses for long periods of time, for the obvious reason that people need to see! At the moment, the longest one is allowed to let a KC patient leave a lens out is around a week - clearly not enough time to any kind of study in respect to progression. To do a proper study, one would have to compare a group with lenses to a group without lenses for at least a year to measure progression. This is what makes keratoconus research so difficult!

Lynn

[Andrew MacLean]

Somebody once asked here if a cross-cultural study, comparing KC in a community where contact lenses were commonly available for KC with the same condition in a community where CL's were not so readily or affordably availble. My answer was that there would be so many other variables in such a study to make any data worthless.

I guess that this throws us back on intuition when looking at new theories or approaches. Most people here know that I am less sanguine of the unmingled benefits of CXL than others. Nonetheless CXL does have strong intuitive appeal and if, in the long term, my misgivings prove I'll-founded I shall be the first to put up my hand and say 'I got it wrong'.

While I do hope that may happen, I do not really expect that it will.

Andrew

[Lynn White]

Good answer Andrew...

I can say, having worked in a country where many keratoconics do not wear contact lenses, that keratoconus can be just as advanced as in countries where contact lenses are given straight away. What we cannot say is for any given individual, does contact lenses accelerate or regress the condition.

There are actually other ways of looking at this though. Back in the 60s and 70s, when the only lenses generally available were rigid ones (made from non gas permeable plastic), lenses were routinely fitted "steep" or "tight" and as practitioners we did see corneas go steeper. This has been borne out by research that shows that after only 4 hours of wear of a steeply fitted lens, a NORMAL cornea will demonstrate steepening. So from this sort of research, we can extrapolate what happens to keratoconic corneas, knowing what happens to normal ones.

For anyone interested in the biomechanics of a keratoconic cornea - as in how it reacts under various pressures of contact lenses and eye rubbing, Professor McMonnies has written a series of excellent papers which can be found here [url]http://www.ncbi.nlm.nih.gov/pubmed?term=McMonnies+Charles[au][/url]

Lynn

[Steven Williams]

Interesting debate and some good points. Much appreciated.

Until KC patients have regular (at least 2 per year) topographical records taken and these records made available for scientific research I cant see us us ever finding the truth to such a key issue for KCers.

[Fordy]

I must agree with Steven on this one, there seems to be no coordination beetween departments or monitoring of the situation.

It seems to me that all they want to do is to send you away with as good a vision as they can in as quick a time as they can.

While this may help us in the short term, we are never going to move forward with the way the condition is treated, and who know to one day a cure.

Living in hope.

Fordy