UK Keratoconus Self-Help and Support Association

I went back to MEH today for my 6 monthly check up, feeling OK about it. I went armed with my notes of things to ask about. The note is now in the bin.

I am now home, and feeling totally lost and very upset as the Consultant now tells me that he doesn't think I have Keratoconus - despite a member of his staff clearly telling me I did back in November last year. The doctor I saw first today seemed to think it may be "sub-clinical" KC (whatever that means) but the consultant looked at the Topography pictures and disagreed as he said there is a "check list" of criteria and I don't meet them. (He didn't specify what those criteria are, and didn't ask me anything).

I suppose I should be grateful if I don't have KC, but the worrying point is if it isn't KC, then what is
it? (and I'm linking this post to an earlier one made by Luca) http://www.keratoconus-group.org.uk/for ... c&start=10[/url]

The consultant said he hadn't a clue what it was other than there was some thinning of the cornea, and that I was welcome to get a second opinion. He commented that if RGP's helped the problem, then what was I concerned about...? He said I should have good eyesight - but I simply haven't!

So what on earth do I do now? I suffer from lots of the same symtoms as many of you on this forum, and having tried to find some answers for some considerable time, it was such a relief back in November to know what it was. I'm now back to square one. And I now worry that I don't have the right to be a member of this group any more.

Oh and I also went to the contact lens clininc - they have suggested I try sclerals, which I am going to do - but if I haven't got KC why do I need them..............

With all the problems I've got at work, and now this I am at my wits end.

Sorry if I have rambled on but this has come as a bit of a shock, I can't think straight and I don't know what to do.

Pat thats awful! And as far as I am concerned you are more than welcome here.
I dont know anything about the checklist, or what it could be if not KC. He should have spent more time and explained the situation to you.
If the other lenses will give you good vision and be comfy then still get them and in the meantime make another appointment and ask for some answers?
Or get on the train and come and see my consultant and lens guy........the lens fitter alone is worth the journey
Seriously though, you need to find out whats going on, think I would consider seeing someone else for a 2nd opinion.
xx

Pat,
Sounds truly grim!
My first consultant was a little dismissive also of KC, stating my right eye is sub-clinical but there 'something going on with the left eye'. Now my left eye has progressed somewhat in a year and is clearly keratoconic. My right eye has changed very little in this time. I was kinda upset by his attitude because my symptoms were identical to those of KC and were not ammenable to specs. Just like you I wondered: What does all this mean, I don't have KC but I have all the symptoms. The matter eventually became clearer because of 2 factors:

1. My left eye progressed from 6/36 to 6/120 with no correction from specs and I could see 16 multiple images with my left eye. The whole problem was stopped with an rgp. This leaves very little doubt in my mind at least and the consultant had no hesitation in diagnosis (the last time). If it is not KC then it something very like it which responds to the same treatment. That's good enough for me!
2. My brother has posterior KC which is where the KC affects the rearward layers of the cornea. He too has KC symptoms but it was a while before the opthoms could detect it (or surmise that it was KC) because it is not apparent on the surface. The bad news is that this is less ammenable to contact lens since the problem lies deeper. Although my right eye is sub-clinical I still see two very distinct images of any given object. Either I ahve a touch of my brother's complaint or the mild KC in the right eye is structured such that I still have symptoms normally associated with greater progression.

What I am trying to say is there could be a lot more to this than you think. I am not suggesting you have posterior KC, that would need to be properly diagnosed by a professional but there could be an aspect of your KC that is yet to be discovered. If you can keep pushing for a greater investigation. You clearly have big problems with your eyesight which either is or behaves very much like KC.
I would keep up the contact lens clinic attendance and continue to investigate the sclerals. If they help then the label the condition has is truly academic.
I think you have every right to be in this forum, you are a valued contributor and I for one, hope you keep posting!
Good Luck Pat
Matt

Pat,

I dont know how much this will help but when I back under the care of Brighton Hospital/Sussex Eye Hospital I had one main specialist who told me without a doubt I had KC.

I got referred to her by Vision Express who stopped a eye test half way through because they said I had KC.

Working with my specialist were a number of students (often foreign learning their trade here) who agreed, I had KC.

I got seen by one contact lens specialist who came across from the US. He was a laugh, but he agreed, I had KC.

My specialist now that I am here in Leicester agrees, I have KC.

However, a few years after I was first diagnosed with KC a surgeon who looked after me for double vision (squint) debated it, he didnt feel like I had KC or if I did, it wasnt that bad.

Now, thats 1 consultant out of about 7/8 specialists who have seen my eyes since my initial diagnosis, yet the one who disagreed was obviously a qualified eye specialist as he cured my double vision! (unless somebody else sneeked in and did it while I was under the anesthetic! oooerr!)

What I'm saying is dont be downhearted or put off by one persons opinion/diagnosis - otherwise there wouldnt be such a thing as a second opinion. And if its not KC, whats wrong with treating it in the same way as if it was?

I think now with the NHS *you* can decide where you go to get treatment - when I got referred recently by my GP to Leicester Royal Infirmary about 2 weeks later I got sent a survey asking me if I'd been given a choice..

Anyway, you've got to have KC - we'll miss you if you don't!

Another idea - do you have a copy of your topography - maybe one of the specialists on here could help you?

I'll stop rambling. Hope things work out.

Ed

Hi Pat sorry to hear you have had a rough time at Moorfields today, if its any help i was going to Moorfields for years and they never spotted my KC, it was only when i went to the QE11 hospital that i got diagnosed

Maybe it would be worth paying to see someone privatly for a one off consultation,
i have done this twice now once when i was waiting to see John Dart @ Moorfields i saw him privatly just to get things moving and also when I was waiting to see Ken Pullum.
PM me if you want a number for Mr Darts seceratary. I have always found him very helpful he seems to know what he is talking about

Anne

Pat,

Sub clinical is what is often refferd to when people have gone all their lives such as you with glasses and then one day find glasses no longer help. As KC is usually diagnosed in teenage years it means you probably had mild KC from then to now.

When the specialist looked at the topography, was it done today imediatly after taking lenses out?

I have been told that the weight of the lens on the cornea can flatten it a bit which is why it is quite common for the first lens fit needing to be tweaked. I may be thinking too simplistic, but if the lens had flattend the cone a wee bit, a topography staright after lenses being taken out might make it look like you have subclinical KC.

A second opinion I think is in order and that might mean going without lenses this time, perhaps 48 hours without lenses to allow the cone to settle.

Thanks to those of you who have responded, I'm a little calmer than I was earlier! But vision still rather more blurry than usual - tears don't help! But it means so much to have some one else to share one's despair with!

Anne- I am going to PM you - thanks. But do you know who you saw at QE11? Might be worth a referral there as it's relatively local.

Donna - thanks for your support - as always! You are a real help and support to me.

Eddie - thanks for your help. It's interesting what you say about a squint. I had a squint as a child and had it corrected by an operation when I was about 6.. I then had another op at 13 for " double vision" but I simply cannot recall the real symptoms - and I do remember it not making a lot of difference. And the first time I saw a consultant early last year with my "double" vision problems he said I had a muscle problem and needed an op - but a visit to someone else to "do the measurements" before the op revealed that "I am not sure what is causing your vision problems but it certainly isn't muscular.........." . Then we went through the Cataract saga, which made my problems worse.....
I don't have a problem with treating the symptoms at all - at the end of the day I want (if possible) to be able to see clearly - but I do want to know what the diagnosis is in case there is anything I can do myself to help. Didn't think to ask for a copy of the topography - it was so worrying at the time as no-one actually seemed to know how to use the machine! So I am not sure if they did it right anyway! But todays pictures upside down didn't look anything like the one they did in November....certainly the colours were not the same....and there were conflicting comments about the left and right eyes - didn't fill me with confidence...

Matthew - Thanks for your help & support . But do you know what "sub clinical" means? The doctor/ophthalmologist I saw today was foreign and although her English was technically good the idioms and colloquial terms left something to be desired! When she tried to explain I was well lost! My visual acuity in my left eye (which is my very dominant eye - I have a lazy right eye) is (in my view) is not a good indicator of KC because of the Cataract op. I have a false lens of course which technically gives me good visual acuity - but the ghosting and double (multiple ) images are very clear - believe me seeing 12 clear moons with one eye, and about 8 with the other is off -putting! The consultant seemed surprised that specs did nothing for me - but g*d knows I've tried! Does he really think I'd go through all this if I could get specs to sort my problems!

So, still feeling very down tonight but less than I otherwise would because of your kind messages - thank you.

Gareth
Sorry - hadn't seen your reply when I started drafting mine. I had only just taken my lenses out when they did the topography. What you sad makes a lot of sense. Especially as when I spoke to "someone" in November, he said exactly what you have now said - that I have probably had this for many years in a mild form and for some reason it has now accelerated. Could be hormonal (excuse for everything when you get to my age!!)

I am glad Gareth answered that. I think I know what 'sub-clinical' means but explaing it is more difficult. I just think it is KC but not requiring special KC treatment such rgps. Strange because my right eye has been described as sub-clinical but without lenses I see in double
Anyway, glad you are feeling better. It just seems to me that if it behaves like KC....
Anyway, hope you are feeling much better soon...

Hey Pat!

I don't know what to say really, looks like we sit in the same boat

If I would try contacts would that help to diagnose poteria KC? If lenses would not improve or totally remove double wouldn't that mean that the irregularities of the cornea are indeed taking place inside it? Meaning that if it would improve it is exterior, as lenses simulate a corneas perfect shape?

Catch my drift?