matty_matt and his eyeballs

[matty_matt]

Hello people. First time posting here (well, actually second posting - I replied to a thread about rainbow edges in the General Discussion). Aaaaaaanyway....

Here's my KC C.V. (Keratoconus Cirriculum Vitae - afterall, this pointless disease has shaped our lives more than any job has, let's face it!) as it stands. Bare with me:

I'm one of those with every chronic atopic allergy, (eczema, asthma, hayfever, dry eyes), so keratoconus sets in for both eyes when I was 16. Cornea grafts done in both eyes in 1990. Both grafts became 'keratoconic' afterwards so ultimately all we managed to do was swap one shape of vastly distorted vision for another shape. Spent the next decade or so just about coping with normal contact lenses without too much trouble from the corneas themselves.

Post-2000 and the intolerance to the lenses increases, not helped by some atrociously clueless and/or unsympathetic eye/lens doctors. Takes many years to find specialists (both at Sutton Eye Unit and at Moorfields - yes I know, why did nobody send me there before? Because nobody mentioned the idea to me during all those years before!) who are better equipped to understand KC. So now I'm under Professor Larkin at Moorfields and under the wing of lone-crusader Ken Pullum designing his special KC schleral lenses.

Not a moment too soon either. The rate of problems with my cornea grafts (infections, near rejections, failing inner-linings causing fluid flooding - I've been taking dextamephasone-however-you-spell-it eyedrops every day since 2005 now), combined with the severe atopic conditions I have (I'm taking the dreaded cyclosporene immune-system-repressing drug for my relentlessly chronic eczema) is making life very tough & depressing indeed.

I currently have severe HYDROPS in my right eye at present, diagnosed 4 weeks ago (the graft is apparently only a partial graft - some of the old cornea is still present. I learn little titbits like that all the time). Moorfields say it's something that gradually works itself out, albeit 6-8 weeks to do so. Has anyone here had a similair episode of hydrops and eventually come through it back to normal? (My rate of eye trouble compared to my rate of recovery seems alarmingly tipped for the worse these days. I dread to think the hydrops might be permanent). Anyone posting their experience with recovering from hydrops would be welcome.

Okay there's my KC C.V. rant for now. I'm sure much of it will ring bells for many here. Look forward to hearing from you.

(Matty)

[rosemary johnson]

Well!
Hallo again matty_matt.
Gosh, what a tale! You have been having all the bad luck.
To answer your question about hydrops.
I've had 4. This is supposed to be impossible, but of course it had to be Muggins Here who did it.
The first one was in my right eye, during my first Christmas vac from university. THe whole world went white, like a steamed-up bathroom window and I couldn't see a think out of it.
The mist started to clear at the edges after aout a month, and cleared gradually across the rest after about six weeks.
I'd een told a graft was on the cards and spet that term wondering whatever would happen to by degree course.
Fortunately, it cleared very well, and the thoughts of a graft went away ..... well, for the next 27 years, anyway. That eye was grafted this January, but that's a whole other story.
The second was in the left eye, and happened just at the start of my Finals term at university. Again, the whole world went white for a month or so, started to clear slowly at the edges and was clearing over about 6 weeks later.
Is it any wonder i didn't quite get that star First??!!!!!
This one cleared up reasonably well, though not quite so well as the first and was more sensitive and blurry for several months till it settled down.
The 3rd and 4th were both in this one, the left eye, and were much less severe - a bit of white cloudiness in the centre, feeling sore and sensitive and not tolerating the lenses well.
The 3rd, I didn't immediately realise it was a hydrops - just started putting two and two together after a while of this.
Next appointment with Ken, about 2 months afterwards, I said "I've been having quite a lot of aggro from it. I'm wondering if I've had a mini-hydrops."
"Shouldn't think so," he said. "People don't get hydrops more than once in the same eye ever."
Then he had a good look at it down his slit lamp and said "Do you know, I htink you could be right!"
Yeah, right, has to be me who breaks every rule in the book!
The fourth one was about a year after that and again quite small - only a bit of white cloud in the centre, but that one did hurt - I don't remember much pain from the first 3, oddly enough! -= but maybe I was jsut too shocked about the world turning white like that to think of pain for the first two.
I had the contact lens back in within a week - largely out of desperation, because the other eye was hurting too much not to.
Both 3 and 4 seemed to leave after-effects for ages - lower tolerance to lenses, eyes getting sore easily, etc etc - for, oh 9 months or so.
But they did settle down again eventually.
The eye that had the 3 hydrops I still have.
At the time I was offered grafts, the two were muc of a muchness - about the same (lack of) vision unaided; not that much difference in acuity with lenses. THe left lens with a scleral had lower lens tolerance but less ghosting, the right had better tolerance with piggybacking a soft lens under a scleral, but more ghosty double images, so harder to do things like reading with it. The offer from the surgical people - who I'd never seen before! - nor any of their colleagues in years - was "let us know if you want to go ahead and if so, which eye you want to do first."
I don't think the hydrops history really came in - the 4th was in 1999.
Really, the outcome depends just how well they heal up - my first healed very well really and the others not so bad. They do tend to leave scarring in the back layers of the cornea, and it is just a question of how much scarring and where it is - to one side where it is out of the way, or dead centre in the way of the vision.
Some of the medics see a hydrops and start lining up a graft straight away, others will leave it to see who it settles down over several months. It certainly ought to be allowed to heal over and the scarring to develop and all the extraneous fluid that has flooded the cornea to drain away. Tring to graft a still-soggy cornea tends not to work so well!
Incidentally, someone who has had a hydrops has to have a full thickness ("PK") graft done, ecause the scarring is in the part that would be left. For other people, partially-thickness or "DALK" grafts tend to be preferred. SO I'm not too surprised that's what you've got, though I do think they should have told you.
Hope your hydrops clears up promptly and cleanly. And that the pain goes. Do keep us updated.
rosemary

[Andrew MacLean]

matty_matt

Again, welcome to the forum. As Rosemary says, you do seem to have a lot to live with.

I am sorry that you had such a long wait for a referral to Moorfields. Your HYDROPS sounds alarming, but it will not be permanent. Once it has healed and your eye has cleared, you will know whether your sight will be back to the pre-Hydrops condition, or perhaps damaged further. (or, as does sometimes happen; improved )

All the best with your recover, and again, it is good to welcome you to our little community!

Andrew

[matty_matt]

Just a small update....

Prof. Larkin is a doctor at Moorfields who really knows his stuff! He diagnosed the hydrops in my eyes and gave it 6-8 weeks to clear...and he was bang on right!

(Matty_matt)

[Andrew MacLean]

I guess that's just the time that it takes: glad to know you are well.

Andrew

[sheilachadha]

HI Matty Matt

I too like you suffer from eczema, hayfever the works but on top I have a severe allergy to dairy and eggs and guess where muggins feels it first. Yup in the eyes! They itch like anything until they are red and puffed up and then I get sever eye infections.

I'm under Mr.Larkin and Ken for sceral lens. Such a life saver. Mr.Larkins team were forcing me to wear normal contact lens for 2 years and I kept telling them that they weren't settling in my eyes but they didn't listen so I discharged myself last year. Went back after glasses were no longer helping me and I knew I was in trouble. Then one day late at the hospital one of the dr's happened to have patients who wore sceral lens and she took me to Ken. I felt like I'd been given my sight back.

I've only just joined the forum today but from what I have read already about your eyes and the condition of other people I don't think I have any confidence that grafts will work for me. I do hope your sight improves for you.

Sheila

[gilly49]

Hi Matt
Just joined the forum on behalf of my son who is 17 and just been diagnosed with KC. Wondered if you could tell me more about schleral lenses as we have just been to see a specialist in Swansea who wants Josh to have the cross linking riboflavin/uv treatments and the notes he has sent me are quite daunting with regard to side effects, etc. Apparently the man we have seen is the top man on KC in West Wales but it still frightens me as we know nothing about KC and hadn't even heard of it until a month ago!
Regards
Gill

[Andrew MacLean]

gilly 49

Welcome to the forum!

sorry to hear about your son. Stay in touch!

Andrew

[rosemary johnson]

Hi gilly - and josh - and welcome.
Scleral lenses - since you ask:
they are hard lenses, made of ne of the various varieties of RGP (=Rigid Gas Permeable) plastics now available.
They are about the size of a 2p piece, though obviously curved not flat! Everyone who first sees one has a fit at the thought of putting one in their eye, but most of us get used to that, and some of us find them more comfortable than other sorts of lens.
They fit right over the front part of the eye, and "touch" on the outer, white parts, behind the eyelids, with a reservoir of tears between the eye surface and the back surface of the lens.
This means they can accommodate a lot of oddities in terms of strange shaped cones or other KC odd shapes, and also operation scars/stitches, etc.
Unfortunately, they are quite a rare expertise, and some of the "experts" think f them as old-fashioned, old hat, whatever, and look down their noses at them rather. Which is a great shame for those people for whom they work a treat!
Actually, scleral lenses, then made of glass, were the first to be invented, in about 1880 - and invented for KC, would you believe?!
As for the CXL - it is intended to slow of halt the progression of the KC, which contact lenses of any sort won't do (they just try to correct the vision of the eye one has at the time.
The modern climate means you have to be given lots of warnings about possible side-effects. Hence, also, the extensive leaflets in any packet of pills you get in the chemists for colds, headaches, hay fever, etc.
Which, of course, doesn't stop the worry when you've only just come across this weird condition called KC.
All best wishes to you both.
Rosemary