I have Keratoconus

[Anne Klepacz]

The trouble is, most of us who post here have had experience of KC progressing and tend to forget about all the people out there with mild KC in one or both eyes. A friend of mine was diagnosed more than 15yrs ago, prescribed contact lenses and has had virtually no change in prescription for all those years. Needless to say, he is not a member of this group as KC doesn't affect his life at all. And I'm sure there are many more like him out there. So progression in the 'very very good' eye is by no means inevitable. If it's now being regularly monitored (and you'll no doubt be monitoring it yourself now too) then I don't see the need to rush for a graft. Obviously that would change if the good eye changes, but that's not going to happen overnight, so you should have plenty of time to consider your options.
Anne (Had grafts on both eyes in pre DALK days, so not agin grafts! But who knows what new treatments are round the next corner?)

[Ken G]

Anne's point is an extremely important one in my view. From casual observation, the majority of posts on this site are either from those whose KC has unfortunately progressed to the point where it has a more profound effect on their lifestyles, or those who are newly diagnosed. Clearly, and for differing reasons, the site is an invaluable source of information and support.

However, the statistics tell us that the vast majority of KC sufferers occupy the ground where the condition is either sub-clinical, or where it can effectively be managed without recourse to the more radical interventions. Throughout my entire KC history I have had the consistent clinical advice that once a KC'er hits tha age of about 30, then the chances of the condition continuing to progress significantly decreases.

This is a great website, full of well intentioned people, and yet I do get the sense that those who log in in a confused and frightened state of mind could inadvertently begin catastrophising about their prognosis.

[GarethB]

Ken

The last paragraph in your post is precisely why we felt it was important to have a Frequently Asked Question section to hopefully put things in perspective.

18 months ago you would log in hear and go 'Oh my God' because of the extreme cases.

That balance is changing but will be slow.

It is important for those who have KC but where it has little or no impact to put on posts so that we can offer as balanced advice as we can.

That is why some of my posts are long to try and put my experience into perspective but thre is no such thing as a typical case of KC.

The hospital I go to and the ones I have been too in the past said it would be easy if most KCers fitted in a nice little box, it would be easier to treat and less traumatic for the patient.

[Kevin Delaney]

Hi All

Many many thanks for all your views, perhaps in my orginal posting I didn't give you all the facts needed.

I am 37, I started wearing specs in around 92/93 I was referred at that eye test, went to the hospital 2 years later but I was dismissed quite quickly and said "oh don't worry about it," KC was never mentioned. I then proceeded to have regular eye checks at the optitcians found a great bloke who helped me monitor it. I then moved away from Wales and made what I consider to be fatal error now, I went to a high street optical shop (too save myself money) Doh! They infact we're not concerned that I had a steepening and never once mentioned KC or a referal. Just after xmas this year I decided to go to a private optitcian who immediately said I needed a referal and she suspected KC. I was then reffered on, resulting in the situation i find today.

At Addenbrooke's they were fantastic with me and totally understood I would not be able to manage lenses, but on more detailed looked discovered that they wouldn't help anyway. The doc said that a graft was only way but there wasn't 100% it would work for my right eye, so he said to opt for montioring. He said "If you left eye shows any deterioation we'll get you in" he also said not to wait until the 12 months but get in touch sooner.

As he said a graft is not a easy option, and it would be a long hard slog and in the end it may not do the job on the right eye.

Someone asked in one of these posts about if the right eye is as bad as i'm Saying it is. Well put it this way when I did the eye test and covered my left good eye I could not read the A at the top. My left eye with right eye covered I read all the chart.

Many thanks for reading my posts and responding, I am sorry if I have caused a problem between some of you. I hope to continue to use this site to glean the great knowledge here.

Good luck to you all

Kev

[jayuk]

Kev

Thanks for that

A few things

a) You vision in terms of the eye chart means little when KC is conerened. Many cannot see the eye chart yet can be correct to near 6/6. What is integral here is the shape and eveness of the corneal surface

b) I would still evaluate a graft, but get a second opinion from an external lens fitter whom has fitted advanced KC. You have a number of options in lens technology; Scleral Lenses, Piggybackng etc.

c) I would definately not wait for 12 months. That would, in my opinion, a disaster...as the last thing you would want is to have a graft in 12 months and have issues with the then BAD left eye.....beleive me this would give you bad days!....Imagine recovering with a grafts and also having bad eye days with lenses with the left eye.

d) I would explore PARTIAL grafts DALK, now...rather thena later.....recovery for Partial grafts is around 4-6 months....as opposed to 12-18 for FULL Penetrating Keratoplasty grafts...if Addenbrokes do not offer these...go to some place that do..........

You have alot of options here Kev....but my advice here is not to wait.........mainly because the uncertainty of KC and how fast it CAN progress....

Jay

[GarethB]

Kevin,

Your specialist is quite right that a graft may not work 100%. This is because what the surgeon is aiming for is a corneal surface that is easier to correct vision wise. Only a few have good enough sight post graft that doe not need correction. The rest which to me seems about 50:50 split still need contact lenses (the new corneal surface makes lens fitting and sight correction easier) or glasses.

If for whatever reason you can not use contact lens now, then contact lenses post graft will be just as problematic.

What Jayuk puts for recover times I would beg to differ as we are all so differnet recovery times for each type of graft can not be generalised. There are some here who post graft have made an amazing recovery within 4 months for a partial graft (DALK), others are still strugling over 2 years later with the same type of graft. I know people who have had full grafts and their sight has stabalised within six months and then remained unchanged for years and still there are others 2 years on having problems with changing vision etc.

KC is evry uncertain, but as has been posted earlier, there is probably a vast majority where KC has no impact so have never thought to contact a support group and happily live their lives with glasses of contact lenses.

As for KC stopping at 30 years plus, you show this not to be tha case and my KC at age 36 took a sudden turn for the worse. So I think professionsals amking such sattements in my view is annecdotal as have yet to see research to this effect. I am happy to read such a paper showing otherwise. Afetrall I am a trained researcher in the medical industry.

[jayuk]

Kev

Gareth makes a valid point here.....and I stand corrected...the 4-6 months quoted refers to the tissue healing and NOT the visual enchancements and suture removal so please do take that into account.

However, one main feature between the two methods is the extremely low risk of rejection with a DALK Partial Graft when compared against the Full Graft

Hope that didnt confuse and misguide

Jay

[GarethB]

Just to put things further into perspective, a very small percentage of full penetrating grafts suffer from rejection and even fewr partial thickness grafts suffer rejection.

[Ali Akay]

Gareth,
My understanding of this for forum is that it is a platform for sufferers to share their experiences and offer support to each other.That's why I dont post very often, but still like to keep on eye on what's going on due to my interest in KC.

The point I was trying to make is that Kevin has seen a corneal surgeon at a top teaching hospital,has been reassured, and is pleased with the advice he has received.I don't feel it is helpful to cause him unnecessary worry by urging him to get second opinion, have a graft sooner rather than later, etc.I'd like to think that his consultant is best placed to know the best course of action as,afterall he has examined his eyes! By all means make suggestions and offer support, but I do feel Jay in particular gets involved too much and I am not sure this is actually helping Kevin

[Alison Fisher]

To add another experience I went from not being able to see the chart at all to the day after my graft being able to read four or five lines down it. My first glasses were prescribed at about nine months post graft and the continuous stitch came out at around eighteen months. I had much the same experience with my second graft, although the uncorrected vision is slightly worse than the first graft and I still have seven or eight stitches in.

KC no longer dominates my life and I only found this place because I'm fearful that I might pass it on to my daughters. I would not wish what I went through in my twenties on anyone and would be heartbroken if either of them got it.

Personally I would advise you to go along with what your consultant is suggesting. He's seen you, he knows way more about you than any of us do, and he also has way more knowledge and experience. We can all talk about our own experiences until the cows come home but how many on here have come across someone whose KC has followed the exact same course as someone else's?

The only thing that makes me a little uneasy with what your consultant has said is the one year wait until you are officially seen again. You need to look after your good eye and personally going a whole year without being seen feels a little too long.

Good luck, Alison