Anyone had a cornea that failed a topography?

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mfergus
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Anyone had a cornea that failed a topography?

Postby mfergus » Thu 23 Feb 2012 5:24 am

I had corneal topography the other day whilst going for a second (second, second, second) opinion on all of this.

They hadn't done one since last August, and said I was probably fine, but since I was a new patient, they'd do one anyways.

My eyes have gotten much worse since then, much to my doctor's disbelief. Anyways, long story short, they were able to take a topography of the right eye, but did the left like six times and still weren't able to get a clear picture of it. They said it was too far advanced.

Now I'm kicking myself because I've never heard of this, and my other doctor keeps telling me that I can see fine and don't need a transplant.

Anybody else ever have this happen?

Jezzafletcher
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Re: Anyone had a cornea that failed a topography?

Postby Jezzafletcher » Thu 23 Feb 2012 6:24 am

Hi - if my experiences of topography are anything to go by it's not that unusual to get topography scans that haven't worked. I have had several where "it might be the equipment, might be the eye moved" etc etc. the trouble for me is I always forget that there may be external factors and therefore I always fear the worst about me/my condition. It sounds as though, with the number of second opinions, you have significant medical monitoring in place and I would suggest that you may want to pose the question "so what now?" to them. I am no medical specialist - all I have is my own perception of my experiences and therefore don't want to offer my quassi "expertise". If your Doctor says your condition has worsened then thanks very much for that Doctor but what happens next? As for kicking yourself - as I get older (not more mature though) I look back and see the number of times that I kicked myself, "wished if only I..." etc. the one given that I have identified with KC is that there are no givens - it's like all of us... Very individual. My view - for what it is worth - is don't kick yourself - you need you and you need the medics, be assertive and ask so what next.

Jezzafletcher
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Re: Anyone had a cornea that failed a topography?

Postby Jezzafletcher » Thu 23 Feb 2012 6:34 am

What I forgot to say was I am one of the "severe" KC cases being used for genetic research - last time they asked for more blood and I agreed. Three blooming times the nurse tried unsuccessfully to get a syringe full. I believe I am still alive, I don't think I have turned into a Vulcan over night where my blood changed and I think I still have veins so on that occasion I rationalised that not being able to get blood from me was not about me or even my problem! Good luck with your next consultation with your Doctor.

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Re: Anyone had a cornea that failed a topography?

Postby longhoc » Thu 23 Feb 2012 9:38 am

Hi, yes, as Jezza says, it isn't something you should beat yourself up about. There's an awful lot of variables in play when a topography is measured, probably the key one being the type of equipment used and it's level of sophistication. I went for years -- and I do mean many, many years -- without anyone in the clinic I attended at the time being able to get a set of readings from my uber-dodgy left eye. It was purely down to the rather elderly Pentacam model they had being unable to resolve the cornea due to its distortion. Eventually they got a newer one and that got better results. They (the clinicians) weren't concerned and neither was I. There's other methods for determining changes to the cornea such as looking at your eye (both with and without a lens in place) with fluorescein dye and UV light.

An another thing to keep in mind is that there's a) variations in the topologies which different devices from difference manufacturers will generate and b) even the same device from the same manufacturer will yield variations which are nothing to do with any actual change to your eye -- any measuring device as a tolerance limit. They can also slip out of calibration.

So, topography is a useful aid but is only one aspect of caring for a patient with Keratoconus.

That said, being able to get a topographic reading is a good diagnostic aid because it is repeatable over time. So it is useful in monitoring progression especially in cases where the patient is considering treatments such as crosslinking or a graft. I'd definitely ask the people in the clinic you're attending how old their machine is and what it's limits of resolution are. Certainly, there are newer machines available which can get results from really advanced Keratoconic eyes (with more modern kit, I never had any failures even when I was down to 270-ish microns thickness and up to 75D kMax -- if there are topographers that can measure that, they can probably measure anything). If there's a lot of umm-ing and ahh-ing then you can go back to your GP in primary care and ask to be referred to an eye unit with more up-to-date facilities.

Best wishes -- and don't give yourself a hard time. You're doing everything right.

Cheers

Chris

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andytraill
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Re: Anyone had a cornea that failed a topography?

Postby andytraill » Mon 27 Feb 2012 11:23 pm

Aside from the excellent and much more advanced comments, I can only say that these days when I get scanned because my right eye is that bad when the machine moves I find it hard to stay focused on the little circle (it's quite hard to see to begin with) it seems to move but I know if I move my eye it'll ruin the scan. Have had quite a few time that I've needed 4 attempts... :oops: Could it maybe even something like that?

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Re: Anyone had a cornea that failed a topography?

Postby mfergus » Tue 28 Feb 2012 9:01 am

Thanks everyone for the helpful advice and support. I'm going to find out what model of machine they have tomorrow, as well as going back in for another contact fitting. The second opinion doctor advised a transplant, my primary doctor believes that I'm fine in contacts, though I can't wear them out of the house due to fear of losing them, and lost the Rose-K I had been prescribed within two days due to the little guy popping out somewhere in my house.

I'm just hoping they can come up with something, but it's reassuring to know that this sort of thing happens.

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Re: Anyone had a cornea that failed a topography?

Postby patannh » Thu 01 Mar 2012 11:52 pm

my son had a bad time recently at opthamologists rooms. they couldnt get a good reading but he has congenital nystagmus as well as keratoconus. they said it was the uncontrollable movement of his eyes but that was in western australia. when he first found out he had KC he was in adelaide south australia and the optometrist was able to get good readings so they told him. strange thing is now his glasses dont really seem to be helping at all. its so hard and so expensive. in australia KC is not recognised at all by our health system. no insurance cover whatsoever as they dont even know what it is. so having KC and trying to deal with keeping your vision costs a lot. catch 22 when your sight is required to keep a job mmm. any information and anyone with nystagmus would be welcome. cheers from oz.

mfergus
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Re: Anyone had a cornea that failed a topography?

Postby mfergus » Wed 14 Mar 2012 7:08 am

I'm really sorry to hear about that, I can definitely relate to the costs. I did finally find a doctor who had a more recent machine and they were able to get a complete scan of my cornea, so perhaps finding a really really really modern machine may help? Unfortunately this just brought more bad news, they're not sure if I have Pellucid Marginial Degeneration or KC in my right eye, and they want to fit me for Scleral lenses, at least in my right eye. This would be a tremendous relief, but I literally just finished paying for the RGPs!

At any rate, stick with it, and don't give up, and maybe call some ophthalmologists and ask about how old their topography machines are. Sometimes newer ones can make all the difference.


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