KC so advanced so quickly!

[scord]

This is related to the other topic (jobs in the army and services) I have listed.

My son Ben who's 16 has just been diagnosed as having KC. His eyes started irritating him towards the end of last year. He felt like there was something in his right eye and it kept watering. He didn't go to the doctors as it didn't seem necessary. Over the past month he's been saying his vision is blurred as though looking through water.

He went to the doctors on Wednesday this week and was referred to the hospital the same day to see a specialist.

The consultant told him that his KC is so advanced that the only treatment for him is a corneal transplant which he is expected to have in the next 3 - 4 months.

Has anyone eslse had a similar experience where KC has developed so quickly?

[Libby]

Hello there,

I have KC and I am also the mother of a teenager who has been relatively recently diagnosed with KC so I know how you are feeling.

First of all what I would suggest is that you get a 2nd opinion. I was offered a cornea graft approx 15 years ago by our local consultant, however when I was referred to a specialist hospital they told me they thought I would probably never need a graft and they fitted me with Rose K contact lenses which I can honestly say "changed the quality of my life".

Has it ever been suggested that your son be fitted with contact lenses??? I just seems a little quick to go down the cornea graft route.

Best wishes
Libby

[scord]

We were told that lenses are not an option because of the extent of distortion to the cornea.

I have not stopped researching possibilities. I am looking into crosslinking and intacs as apparently this can reduce the dome of the cornea and restore vision.

Has anyone had this treatment when in advanced stage of HC?

[Andrew MacLean]

They may not offer CXL to a patient with very advanced keratoconus: a very thin cornea would leave the retina too exposed to UV light during the treatment. INTACS may also not be offered due to the cornea being too thin.

all the best

Andrew

[rosemary johnson]

How good is your son's eyesight?
I started wearing glasses for "ordinary" shortsightedness at age 8.
I could read the blackboard from the back row of the form in first and second form of high school.
DUring thrid form, I went from being able to read the board in the back row with my glasses on to barely being able to read the board from the front row, in the space of a few months.
By the time inthe fourth form I got my first contact lenses, I couldn't really read the board even fromt he fornt row, and had given up wearing my glasses as all I could see with them on was the bits of dust ont he glasses so they only made things worse.
I was also really really struglling to read sheet music, as I oculd see about 7 lines at a time.
Apparently, this was KC coming up fast.
I didn't hurt or water much - the vision just went phut!
This was a considerable time ago (I'm now wr yet again.... oh, OK, 47) and neither intacs nor CXM had been thought of.
I got referred straight round t the specialist fitter and put into scleral lenses straight away, age 14. I don't know why - whether the hospital ophthalmologist thought I'd never fit into corneal lenses, so sent me to "Mr Sclerals", or whether I was routinely sent to "Mr Contacts" and he thought I'd never fit into corneal lenses.
Sclerals are about an inch across, and arch right across the cornea, touching on the white edges of the eye, with a pool of tears behind, between lens and eye. SO they can go right over all sorts of irregularities and steep cones.
SOme medics won't think of suggesting them, as they think they're old fashioned and "old hat", but for some of us, they work a treat.
Sclerals were, in fact, the first type of contact lenses ever invented, in about 1880, and were invented for pepoel with KC. In those days they were made of glass and very heavy.
These days they are made of the same RGP (rigid gas permeable polymers) as the corneal lenses and otherwise have benefitted from plenty of advnaces in technology.
I wonder if they might help your son.
Rosemary

[rosemary johnson]

Oh.
I've just had a thought.
Reread your first post.
Is it possible your son has had a hydrops?
Has anyone mentioned anything like this? - or an oedema, which some of the medics use for the same thing.
If she's had a lot of pain and watering, and reports the vision like looking out through water, I wonder if it's possible?
OK, what's one of them?
It's where the membrane onthe back of the cornea splits - which can be anythign from a tiny little crack to a huge tear - and the fluid from inside the eye gets through the crack and soaks intot he tissues of the cornea. THis can cause pain, swelling, distorted (or even obliterated) vision, and can result in scar tissue affecting the vision where the split heal over.
No-one really knows what causes one to happen - though if it has happened, it is a sign the cornea is already pretty thin, probably already too thin for CXL.
What happens is that you have to wait for the split to heal over, and settle down, and for the body's own maintenance processses to get rid of the superfluous fluid that's soaked into the cornea. And preferably, allow it some time to settle down. And then see what scarring ahs developed.
There are some surgeons for whom hydrops will automatically mean a transplant is necessary - and some who try to do it as soon as possible, whereas from my experience of having 4 o f the things, I'd say always give it time to settle down before making any decisions about that.
SOme hydrops do leave a lot of scarring - sometimes from large splits - which does disturb the person's vision badly, and a transplant is a sensible option.
Others heal over without much scarring, or scarring only off-scentre so the person isn't too worried by it, and a new lens and off you go, and no transplant needed.
I had my first hydrops at age 18 - the world was completely white, like looking through a steamed up bathroom window, for a month or so, and people started talking about transplants then. Fortunately, it was alloed time to heal and settle and it all clearly up nicely, so the thought of transplants went away again (for another 28 years anyway, but that's another story). THe other eye had a hydrops of similar size when I was 20, and two mini-hydropses in my mid-thirties. Again, they cleared up OK.
Does any of this ring any bells?????
If so.......
Personally, my experience would suggest giving a hydrops several months (9+) to recover before comitting to anything as drastic as a transplant. And I'd certainly caution that different surgeon - and optometrists - have different views on life after hydrops, with some thinking "transplant" automatically. But some cases of hydrops do leave the vision so affected that a transplant would be a sensile choice.
Of course, I could be barking up completely the wrong tree here and this is nothing to do with you and your son. It just occurred to me, re=reading your post, to wonder if it was possible.
Rosemary

[scord]

There was no mention of hydrops. Ben doesn't have pain in his eye, it feels like it has something in it.

I will find out more about it though as it is a possilbility.

[scord]

Scleral lenses have been mentioned to me on my other post and they certainly seem a possibilty worth looking into.

[rosemary johnson]

Pain levels with a hydrops vary enormously - some people find them excruciatingly painful, others not at all. "Got something in my eye" is one possible feeling of, well, "disvomfort" one might cause.
I might be completely wrong, of course - but it struck me as one possible possibility.
Hope you get soime more answers and alternative suggestions.
Rosemary

[GarethB]

Unfortunatly KC can advance this quick. When I was 17 I passed my driving test easily but six months later towards the end of the rugby season I had two black eyes after getting into a fight during the match. This meant I did my medical for the RAF last of all once I'd done all the initiative and hand/eye co-ordination tests. The day of the medical I had to see the carrers people and they persuaded me to change my primary carear choice from load master to pilot because of my performance. They were disappointed that the medical officer diagnosed my KC but did provide the information for my GP that allowed my treatment to be fast tracked through the NHS. I perservered with contact lenses for six months by which time I was ready for a graft in both eyes. I held off until after my A levels when I had the first eye done and the second eye after my first year at university. My grafts are now over 20 years old and at that time is was contact lenses or a graft. Now there is so much to choose from that although I am unable to comment on army careers it is too soon to proceed with grafts as that is a last resort option and can't be undone. None of the other treatments preclude your sone from having a graft if they don't work.

I don't know about ary carears but for me if I could not do the job I wanted in the RAF there was no point in progressing it. Since then I have enjoyed every job I have done since then. Some have even allowed me to work alongside the armed forces in some dangerous situations.