Quicktopic posts: Aug 2003

General forum for the UK Keratoconus and self-help group members.

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Leon Davis

Postby Leon Davis » Thu 28 Aug 2003 7:22 am

Andrew, Stoop and Sarah,

Many thanks for the kind words, I only have access to the internet via work, so once I am back I will let you know how I got on. I think luck is a bit needed, but my surgeon Mr Daya is pretty damn good by all accounts so I have my fingers crossed, + the food is meant to be pretty good for an NHS hospital, and its a really nice place too,

Right guys and gals, I shall catch you all soon, and a message for Claire, your daughter is one lucky girl, keep smiling hun, I am thinking of you!

x

KateF

Postby KateF » Thu 28 Aug 2003 5:51 pm

To Claire and Hannah
Hi ! I'm a mum of Dale whi is nearly 18, has severe learning difficulties (Down's) and is known as both Charming and Challenging!! Dale developed KC through puberty, and had squints + severe myopia + astigmatism before that !!
Very strong specs balanced on very small nose!

He had hydrops in R.eye in 1999 lasting about 5 weeks. miserable but not strong pain, left a bit of central scarring. Local hospital had no idea what was happening and put cream + a gauze pad over his eye - caused it to go very gunky and smelly so I took him myself to Bristol Eye Hospital in search of help - they were horrified - explained KC well to me, gave steroid drops and viscotears (eyelid lubricant) and saline drops too.

They explained the main treatments should be contacts or transplant and that Dale wouldnt tolerate either. I was so pathetically grateful for the help that I didnt question that at the time - although I remember I was spitting because they said they wouldnt treat anyone with severe learning difficulties, which I thought was wrong, but had to acknowledge I couldnt see that Dale would tolerate it.

He was quite hyperactive and oppositional at the time, and very averse to anyone touching his face head or eyes, and a terrible eye-poker and rubber too.

Dale had second hydrops this year, Jan 2003, again about 6 weeks - opinions vary as to if there are scars or not.
Same drops as before although teh cahp we see now says the ey is best left to get on with it and the salinedrops sting and arent proven to help...

This time I suddenly realised that his glasses were now less than useless. I hadnt understood till then that glasses can't correct everything! Dale's vision is 1/20 unaided and 3/20 with specs- desperate really - I cried for a week when the doctor kindly told me he was registering Dale as partially sighted.
Meanwhile I was realising thro' this site that there are others with learning difficulties who have lenses so I got tough again and went in search of lenses for Dale.

Found Ken (hertfordshire) who is terrific and skilled and patient and was wonderful with Dale, played clapping games with him for an hour before skilfully getting him to trial scleral lenses in each eye , then referred us back to NHS so we dont have to pay. see http://www.sclerals.com

Got lens one 3 weeks ago - ups and downs but mostly ups. I can now get it in and out through various forms of persuasion, trickery and bribes. Now i ahvto get others to learn to do it - or rather get Dale to accept others doing it - because D. goes to residential school - lots of things still to achieve
eg buiding up the length of time he can tolerate lens; getting the second lens and trialling that ; training care staff teachers LSWs and hopefully Dale's brother and sisters too.

But Dale has achieved such a lot.
Forgot to say that up till this year he has never looked at an eye chart or opened his eye for eyedrops or examination !!!
And of course that Dale can now see !! about 12/20 or 15/20 (better than me when my glasses are off!)

I'm on kdfarminer@tiscali.co.uk if you need to know anything else

A word on corneal graft - I have heard that its not the best idea to do it in association with hydrops as the cornea is too soggy at that time.
A word on corneal scarring from hydrops - I've had different views about Dale's, but the last examiner said that it was a bit like having a dirty line on your windscreen - if you tip your head around you can see what you want somehow and its annoying but not too disabling.

Anyone out there can say whether this is true or not ?!

Hoping Hannah is managing well - don't worry, things work out after an age, and you need time to get a logical perspective on what to do next.

Kate N Dale xxx

umbilica@umbilical.demon.

Postby umbilica@umbilical.demon. » Thu 28 Aug 2003 6:26 pm

You're very welcome, Claire!

It does sound like Hannah's hydrops is now clearing up - I'll
keep hoping for her that it clears up well and truly.

Do keep us posted with how it goes.

Rosemary

--
Rosemary F. Johnson

umbilica@umbilical.demon.

Postby umbilica@umbilical.demon. » Fri 29 Aug 2003 9:34 am

Kate F said:

Lots of good stuff - including son Dale's hydrops, and now
scleral lens.

Kate, that's great - I'm so glad dale seems to be getting on
with his lens. Good luck with the second lens and teaching
others to put them in/out.

Kate says she cried when Dale's doctor
"kindly told me he was registering Dale as partially sighted."

Don't knock it - having the registration number can open doors
to assistance you may not otherwise get. And you can buy
special equipment he needs without the VAT.


Kate:
"A word on corneal graft - I have heard that its not the best
idea to do it in association with hydrops as the cornea is too
soggy at that time."

Yes, that's true - you have to let it settle down and the
flooding drain away first.

Kate:
"A word on corneal scarring from hydrops - I've had different
views about Dale's, but the last examiner said that it was a bit like having a dirty line on your windscreen - if you tip your
head around you can see what you want somehow and its annoying
but not too disabling."

Yes, I'd say that was a good description. Or maybe: you know
those zebra zone windscreens? - if you wear polarising sun
glasses, you see rainbows where the zones are. SOme people say
you shouldn't drive with polarising sunglasses; other people say you get used to looking through the rainbow areas and not
bothering about them. It's a bit like that - fuzzy white bits,
but you sort-of get used to looking through them and not
bothering about them.

But then, isn't that a lot of what KC is about? - we see all
sorts of visual distortions, multiple images, etc etc, and have
to get used to making sense of what we see and ignoring the
smudges.


Rosemary

--
Rosemary F. Johnson

Janet Manning

Postby Janet Manning » Fri 29 Aug 2003 3:45 pm

The plastic on my left scleral lens is disintegrating creating a fuzzy patch. This is the second time this has happened to me so I realised what was happening when I began to have rather a lot of 'bad eye days'.

Easy I thought, ring the hospital with my number and request a new lens be ordered. 'We'll get back to you,' they said. I offered to go in (a 20 mile round trip) just in case they wanted to inspect the lens. Next day with headache increasing when I had to do close work, I rang again. No progress. I have now rung 6 times, had loads of promises to get back to me but nothing happens.

I remained polite and even apologised for phoning so often, but explained how crucial the lens is to me. Last time this happened, the order for the new lens was left in my file for a month, until I queried where my new lens was! I was struggling to finish a dissertation at the time and had to wait a total of 6 weeks for a new lens. Also had to stop driving because the old lens continued to deteriorate.

When I mentioned today thet if I had £600 I would go and get a new lens privately and have it in a few days, I was told that the replacement would cost the hospital £200. Am I supposed to have a guilt trip over this? The irony is that with the help of sclerals I have got off Incapacity benefit and am now once more contributing to National insurance. If I don't get a new lens soon, I will qualify once more for benefit!!!

What I am asking for should take no more than 15 mins for someone to do. If I get no joy on Monday it will take them a lot longer believe me, 'cos I will be arriving in the department and camping out!

I would never wish a problem on anyone else, but I wonder if the person I have been talking to has any real concept of the impact this has on my life. Perhaps they should experience it for a day and then they might be more sympathetic. A small piece of hi-tech plastic is all that lies between me and reasonably good vision. Is it too much to ask in the 21st century that a new lens is promptly supplied when necessary? In fact I think we should all be allowed a spare set to avoid this sort of problem.

Any ideas how to campaign for this?

Janet

KateF

Postby KateF » Sun 31 Aug 2003 4:04 pm

To Janet Manning
tell your hospital my son's hospital's timescale (Cheltenham) -
Lens fitting on 30th July a.m.
Same day I e-mailed his consultant who also is director of the company that makes the lenses (Ken Pullum) to say "Look out for my order, it's on its way - speedy response please."
Next day 31 July before Ken had even picked up the e-mail Chelt phoned to say It's in the post to us already! They had phoned the order in and it had been actionned.
Lens given to us on the following clinic day = 6th August.

Im not trying to provoke jealousy or rage!! Just to show what is possible.
The answer seems to be to get just one single person that understands, somewhere along the line.
Is there any way you can phone a different number or see a different person in thechain??

Something else that works - when they messed me about with my son'e eyecare at Glos hospital - kept saying his file wasnt about so they couldnt action anything, taking notes on scraps and losing them, tried to correct squint in wrong eye - I wrote to say I wanted to examine his file and make a formal complaint (copy to GP, social worker etc etc) - BIG response within days - met with top people very anx about how big a fuss I was going to make (hint of local press here !) and for a brief perieod they were consistent anyway!

Keep shouting!
KateF


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