KC so advanced so quickly!

[Lynn White]

Gareth,

Getting into a fight? YOU?

Actually.... and very seriously now... it is entirely possible that your two black eyes contributed here to your fast progression. Recent research is coming back around to talking about mechanical trauma to the eyes as part of the cause of progression. Sudden spikes (increases) in Intra Ocular Pressure (IOP) can cause deformation in an already thinned cornea. This also applies to all contact sports and also to suddenly lifting very heavy weights.

It is noticeable here on the forums how many people report sudden deterioration "overnight" both in terms of blurriness and hydrops. Rosemary is quite right to suspect a hydrops episode here and one issue is that people can rub their eyes very vigorously in their sleep. This can contribute to a very fast "progression". I say that in rabbits ears because what can happen is the cornea can suddenly warp due this mechanical pressure. A warp will induce astigmatism or marked distortions and this can happen literally from one day to the next and reduce vision markedly.

So, as professionals never tire of saying , do NOT RUB YOUR EYES!

Lynn

[rosemary johnson]

Wow, thanks Lynn! Praise from Caesar, as they say....
Seriously...
One of the biggest "clues" that made me start to wonder if there was a hydrops here was the reaction of the surgeon - having heard about surgeons for whom "hydrops" always means "Needs graft a.s.a.p." After wondering about the reaction you'd had, it suddenly struck me as sounding like a post-hydrops surgeon's reaction - and wondered if the physical symptoms would fit. Which, on review, was a possibility.
Cynic? me??
NO, on re-reading, it seemed just possible, so I'd mention it.... and quite possible also it isn't.
Incidentally, if sudden spikes in IOP can ahve that effect, is travelling to/at high altitudes also a bad idea?
= or indeed, jobs involving lots of flying. Or furniture removing.
I remember having quite a bit of aggro with the contacts when I was in Africa - but put it down to the hay fever from unfamiliar pollen (after getting over a sleepless overnight flight) - nver thought of eyes bulging out more in lower air pressure up on the highveldt.

Rosemary

[Lynn White]

Rosemary...

Its SUDDEN high pressure spikes that do it - not smooth changes. Your body adjusts to altitude quite easily. Now, if you were a trick flyer pulling lots of high G dives and turns, then yes, you might have a problem, but normal flights or change in altitudes don't.

So furniture removal might - but not if you lifted correctly.

Whats more of a problem is contact sports, weight lifting, even yoga, believe it or not, because you go into head stands and so on. Sports like squash and badmington where the projectile fits neatly into the ocular socket. That sort of thing!

Lynn

[scord]

Just thought I'd update you. On Tuesday Ben has got an appointment with a surgeon and opthalmologist at Optegra Eyecare in Guilford and on Tuesday 14th May we are seeing David Jory in Harley Street. Fingers crossed Ben will be offered an alternative to a corneal transplant.

[scord]

RESEARCH INTO ALTERNATIVE TO CORNEAL TRANSPLANT HAS PAID OFF

First of all I would like to thank everyone who encouraged me to get a second opinion with regard to Ben having a corneal transplant. In fact we got three.

First Ben was told a corneal transplant was the only option as his KC was so advanced.

We then got a private consultation and were told that crosslinking could be done but it would need doing within 2 weeks at a cost of £2500 but could not guarantee it being successful. I panicked at having to make a decision so quickly.

We went back to the opthalmologist that Ben first saw. He said that he also did crosslinking but felt it was not an option. He told us that we did not need to make a decision immediately as the KC had stabilised and he was happy to refer Ben to Moorfields.

Ben was seen at Moorfields last week. He was tried with contact lenses which although improved his vision to some extent, were uncomfortable. He was then tried with a sclerel lens. This he found comfortable and improved his vision from ' counting fingers' to 6/9, which is sufficient for driving. Ben will be fitted with his lens in August.

We couldn't have wished for a better result.

Ben may still not be able to join the army but there are other possibilities within the uniformed services which he is looking into.

Ben is now far more positive about his future.

[Lizb]

glad that getting a second (and third) opinion has paid off (so to speak) and Ben has found something that will work for him at the moment.

second opinions do sometimes lead to the same outcome as the first but other times as you have found it gives you another option.

[GarethB]

This case really highlights how inconsistant KC diagnosis and treatment is and that we need to presurise NICE into a consultation to draw up proper guidelines for KC diagnosis and treatment.

Hopefully this group will be getting involved in that, especially as they must have on record numerous accounts such as this one.