UK Keratoconus Self-Help and Support Association

Had a "second opinion" consultation today following my disastrous visit to hospital in June, and the consultant I saw today confirmed that I haven't got KC. So that is good news for me.

But the "bad" news is I do have a corneal "Coma" - also called a "higher order corneal aberration" [which apparently is effectively what KC is too just presents differently so i am told] which gives very similar symptoms to KC - particularly the multiple ghosting & light sensitivity, which have been my problems all along. The tests show I have chaotic refraction particularly in my left eye [as is present in KC patients.] This Coma has no known cause, and no cure either - I have to learn to live with it and manage it best I can. It's progression is a bit like KC - pure guesswork! Surgery is not recommended at all as I could end up with worse vision than I have now. So I have to persevere with RGP's although they won't eliminate all of the problems, just help to manage them a bit.

So, a sense of relief that after all this time I do now have a "final" diagnosis, although that in itself is not particularly welcome. And that someone took the time to listen carefully to what I was telling them about my sight. Doesn't help you all who have KC, and I am very grateful I don't have it, but I have to say that the support I have received from so many of you over the last few months whilst I thought I had KC (according to a certain hospital) has been brilliant. I hope that I can continue to be a member of this group, and, although I can't share my experiences of KC ( as I haven't actually got it!) , the management of my condition is so closely related to that of yours, that I can gain help and advice when needed and can share mine with you too.

Hi Pat

Well, even though your news isn't all that great, at least you at last know exactly what you do have.

I for one firmly believe that this forum is a better place by beeing graced by your presence and would hate to think that you might leave us. You are always offering help and advice to others and as far as I am concerned ( and I am sure others will agree) you DO HAVE keratoconus.

I hope to see you again soon but I won't be able to make the September social because I am on hols

Pat,
You have a huge amount to offer and recieve from this forum. Your experience of rgps for example will help those starting out, as the issues are bound to be generic.
Corneal Coma / KC; its a bit academic isn't it? If the symptoms and remedy is the same as KC.... OK you don't have KC but you are dealing with many identical issues.
If you had the eyesight of a peregrin falcon, you would still be welcome in my book.

It looks like Corneal Coma is treatable and can be completely corrected by the insertion of an IOL.

http://lo.um.es/publications/PDFs_main/ ... coma07.pdf

That said, stay with us! Let us know how you get on. I am happy to endorse your appointment as an honorary Keratoconic!

Abdrew

Michael, Matthew, Andrew - thanks for your kind words - I'm going to hang around with you all for a while longer yet! I've made some good friends here and don't want to lose them!

Andrew - many thanks for posting that article. How did you find it? As you can imagine I have spent some time on the google pages today! From a quick glance it looks like it is a new treatment not yet readily available (but I haven't read it in detail yet). But I am also wondering if it is in fact the new (but expensive and only available privately) IOL that can be implanted in cataract cases. This new type of lens is "self adjusting" and acts like the lens in a young eye so eliminating the "do you want to be short or long sighted" question that one is asked currently in preparation for cataract surgery! A friend of ours had this last year (almost as a guinea pig) and it cost him a lot of ££££'s!

The consultant I saw, [whom I won't name of course - but some of my readers know who he is!] was very thorough and spent a lot of time with me explaining things - but he was also adamant that surgery of any kind is not appropriate - in his opinion it could do more harm than good. He did also explain that there were many different types of coma - and, to put into perspective, short sight, long sight and astigmatism are also coma (lower order) - so I have to take his advice as I am absolutely certain he knows what he is talking about!

The real downside of yesterdays visit was I had my eyes stuffed full of so many various eye drops, and my vision was still quite poor when I got home. So I promptly managed to fall over going up the stairs when I got home. The pain kept me awake half the night as my toe swelled up so I went off to the local minor injuries unit this morning - and am now on crutches with a broken big toe! Ouch!

Ouch at the broken toe
You are one of us now mwahahaha and cant leave Its similar to KC anyway....whats in a name eh?

Doesn't sound like a minor injury to me! Many commiserations. And of course you can't leave us! You're a KC Group treasure whether you have KC or not!
Anne

Pat, it is cornea-group.org.uk here (It took some time for me to realize too! ) There is no question as to your continued written words.

May I ask and I would love to know how they drew the line between KC and Not KC... its a very fine line some-times.

Thanks for being around !