UK Keratoconus Self-Help and Support Association

anohter thing I considered was that the world of treatments for KC seems to be moving incredably quickly at the moment, so if there is not a perfect solution today there may well be in a few months, but once the graft is done it's done and there's no going back??

Exactly Martin...

Grafting is irreversible and should always be seen as a LAST option, not a first. Although many MANY people have successful grafts.. there IS the possibility of rejection and failure, so really you need to go this if all other avenues have been exhausted. As you say, KC is now a "hot topic" as far as research goes and who knows what may be developed in the near future?

Lynn

All well and good, but we are supposed to be a self help and support group. It is hard to discern much support of magictime's decision to go on the waiting list for a graft among all the helpful advice given above.

Yes there are potential problems with a graft: these will have been explained by magictime's ophthalmologist before the decision was made.

Yes there are new therapies already available to some (but not all with KC), and yes there are new lenses that may be of help to some (but not all) with KC.

Yes there is the prospect of new a development just round the corner.

But the decision is not ours to make; it belongs to magictime. Eye care professionals have looked at magictime's eyes through a slit lamp, carefully taken laser topographies, discussed the situation and given their advice.

Yet when magictime comes to us looking for support we form a queue of people waiting, not to support, but to accuse magictime of 'rushing' into a graft.

I just hope that magictime understands that all of the advice given in this string is meant kindly, and that we are here to support each other through any chosen course of action.

All the best

Andrew

Andrew - I agree entirely with your sentiment that this forum is about support and if magictime feels that anything said has been in anyway critism then I will be the first to apoligise. I honestly don't feel that this is the intention of the above discussion.

The main point is that ALL options need to be explored and considered as once a graft is done their is no going back. A graft may well be the only way forward and if it is then hopefully Magictime will have a good experience and yes, we will all be here to support him. However.....................

I too was looked at through a slitlamp, had careful topography done etc, etc and quite frankly, the decision my surgeon made was wrong! Not though any form of malice or mistake, just the wrong decision for me. My Optom couldn't get good vision with a particular type of lens and that was all. I have little or no scarring on my corneas and now see very well with different lenses. This MIGHT apply to Magictime and he should find out for sure before he does anything which is irreversible surely? Surgeons do surgeory and it is their prefered solution - maybe Magictime should get an opinion from a GOOD contact lens fitter? If they suggest a graft also then at least he knows?

Thanks for your comment Andrew, I was starting to feel a bit overwhelmed by all the advice about other options. But I do understand that people are only trying to help.

As I understand it - and no, I haven't had my corneal thickness measured to see if intacs might be an option, tried every type of contact lens etc. - my left eye is simply past the point where such things are likely to help. My doctors might be wrong about that, of course, but even if they are I can see the sense in getting this graft done sooner rather than later, while I still have good vision with glasses in my other eye. Both my eyes are still deteriorating, and I wouldn't want to spend two or three years trying out every sort of lens under the sun only to reach the point where I needed a graft anyway but was struggling to get decent vision in my other eye during the recovery period.

In the case of my *good* eye, I think it might well be worth exploring options like Intacs and crosslinking sooner rather than later, and I did raise that point with my doctor. If they were completly risk-free procedures with a proven track record in treating KC long term, and I could be sure they'd mean my vision in that eye would stay just as it is for ever more, I'd go with that option right now and just put up with my useless left eye (as I have for many years already). But since there aren't any such guarantees, I want to know my left eye is as functional and as stable as possible before taking a view on whether to go down that road - which leads back to getting that graft asap.

The fact is, I'm not an eye expert and although I can find facts and figures and every opinion under the sun somewhere on the internet, at the end of the day I have to take *somebody's* word for it when they tell me what the most appropriate treatment is for me. My current doctor says it's a corneal graft; if I find another doctor who says it's sclerals, another who says it's Intacs, and another who says something else, who do I believe? The one I paid the most? The one who promises the most? The one who's best at telling me what I want to hear? The one offering the newest type of treatment?

Having said all that : I do understand that there's such a thing as an informed decision, and I wouldn't want anyone to feel I don't appreciate their advice.

All the best.

What is your particular interest as you begin your PhD? An old friend of mine used to quip that it was easiest to embark on a PhD if you believe that the world wants to know the answer to your question, and easiest to finish if you yourself still want to know!

Every good wish as you embark on both adventures.

Andrew

magictime wrote:Having said all that : I do understand that there's such a thing as an informed decision, and I wouldn't want anyone to feel I don't appreciate their advice.

That last sentance really sums up to me what people who post on this forum try to do. Share expereinces and knowledge so that we can unravel what has been said to us so at least what we ultimatly decide is as you correctly say an informed decision.

Hi Andrew

My research area is philosophy of mind - not sure if the jargon of my particular topic would mean anything to you, but questions to do with what mental states are/what mental state terms mean. I don't know if the world's waiting for an answer, but it's the sort of perennial question that's always being talked about in philosophy, so I think it's of interest in that small world... whether I'll still care after three or four years is a good question though!

Very best

I remember a far of time when I was quite taken by the work of Gilbert Ryle. My own field was Ethics, but I enjoyed the odd foray into your area; 'phenomenology of mind' was quite popular in the 1970's and 80's (probably because Hegel was in vogue).

You are right at the cutting edge of our understanding of 'self', and therefore of the whole reality. I sometimes find myself wondering whether the new insights from mathematics, the plethora of 'integrated string theories', would have any impact on the philosophy of mind? Would Ryle have written as he did if he were working in an environment where it is common to speak of a reality made not of three dimensions plus one but of twelve plus one?

Enjoy your work! I, at least, will be interested to learn its outcome.

As for your surgery, I am sure it will not have any adverse impact on your ability. Perhaps, however, it would be a good idea for you to let your university know that you are going through this operation, so that they can arrange to have anything they want you to read transmitted electronically or presented in a typeface that is accessible to someone with an eye that is temporarily not working at peak efficiency.

All the best.

Andrew

Thanks again Andrew. I've been in touch with my uni to let them know the score, just so any issues that crop up aren't coming completely out of the blue.

Funny that you mention Ryle - he's very much the starting point for the whole approach I'm planning to take. In my opinion the dismissal of his account of the mind as 'behaviourist' has been a Bad Thing and there's still mileage in his sort of dispositional approach. I'm picking up some threads in more recent research, but also expect to hark back to Ryle himself quite a bit. I hope 'string theory' won't enter into it though, sounds too much like hard work!

All the best