Quicktopic posts: Feb 2002

[John Smith]

Hi Amit, welcome to the group.

To answer Gareth in particular, no; I didn't try sclerals before my graft last month. It was only actually because of this group that I'd even ever heard of them!

When I mentioned sclerals to my consultant though, there was an immediate "no". Apparently, because I had corneal scarring, sclerals would not have been able to give me the vision that I wanted/needed - to be able to drive again.

So it seems that in at least my case, surgery was the only option. And in answer to the "surgeons would say that" - my consultant decided all this and then told me that she wasn't comfortable doing the op, and she'd refer me to someone who could do it better!

Johh

[Sue Ingram]

Hi everyone. Jacqueline - I definitely think you should opt for the latter and read whilst your dad does all the hard work! What better excuse have you got?

Jay - The info on Keraform sounds really interesting. It would be good to see the results of the pilot test. Are there any professionals out there who can let us know what they think of this treatment to reshape the cornea?

Kate - I am also suprised that Ken has not got on recently with all this talk about sclerals - but perhaps he thinks we are all doing pretty well on our own! Thanks for asking about my mum - she has made an amazing recovery so far which is excellent. I am definitely going to the AGM on 16 March so look forward to seeing you all there.

Anyone thinking of doing the Thames Walk or even just doing part of it? Mike, will you be at the AGM so we can ask you lots of questions about how it will work if you only want to walk say a couple of days? Take care one and all. SUE

[Mike Oliver]

I agree with the comments about looking at all the options before surgery. I have been told 4 times in the last 35 years that there was no alternative to a graft in my right eye. Each time optometrists--most recently the legendary Ken--have successfully fitted a scleral lens and no graft as yet. I would stress however that there obviously must be times when surgery is the right option. I just feel everything should be taken into account including the difficulty in predicting the qualiy of vision after surgery.

[Dave Hamblett]

Hi all

just got back from cov and warwick hospital, after my first consultancy (at that hospital anyway) Was most impressed, all have been V.helpful and friendly, just got to wait for a contact lenes appointment now.
out of intrest how may people have had to go to sclerals from rgp's and what sort of time scale, i have been told (and i feel lucky) that my KC is still mild but that it tends to deteriate with age, im still (only) 23, but just wondered how long it takes to get quite bad.

[Philippa Sanderson]

Hi there. I'm eighteen years old and I've had keratoconus for a year now. And I know very little about it, hence this this why I'm looking at this site. I've been issused with contact lenses, but it has been very hard for my eyes to adjust to the lenses, how does it take for my eyes to work properly????!How bad do your eyes have to get before you move up a stage, to a graft, or is there an alternative??

[John Smith]

Hi Philippa, and welcome to the site.

The first thing you'll learn about keratoconus is that we're all different. A contact lens that suits one of us can cause agony for others.

Assuming you're using "normal" RGP lenses, I found that it took about 3 weeks or so before I was seeing comfortably, and then another month or two before I could actually forget I was wearing them. They were never 100% comfortable, but using them I could see.

Grafts are really a last resort, and I was told that I'd only be considered for one when my vision was so bad I couldn't work, or couldn't drive. Many people here have had large "scleral" lenses fitted which can be more comfortable, and will put off the graft for longer.

Hopefully, by the time (and if) your KC gets to the point of no return, something like keraform will be available.

Best of luck, and keep the group informed of your progress.

John

[Vicky Griffiths]

Hello All,

My son is in the process of being diagnosed with KC at the moment. He is only 11, so it has come as an enormous shock to me. Luckily, he is not aware of what it may mean to him, although in time he will have to be told more. We're waiting to see the consultant at the moment, probably at Worcester Hospital, but I dont know how long we'll have to wait. Waiting is really hard for me, and my fingernails are all gone! I did look into the private consultation option, which would `only' be £100.00, with a two week wait, but have been told that the KC expert there doesn't see children, and the other opthamologist isn't very sympathetic, and is quite hard. Don't think I could cope with that at the moment, this is all giving me a lot of anxiety. So we're kind of stuck between a rock and a hard place. Suppose I must bide my time to see how long we have to wait for an NHS appointment.
Moan over!

[Vicky Griffiths]

Just thought of a few more things I wanted to say! I took Gareth for a standard eye test at Boots two and a half weeks ago. They were in the room a really long time, and when they came out, Gareth was taken into the lens room to be looked at by the lens optician. Meanwhile, the first bloke spoke to me, firstly in the waiting room, then took me into the office. This worried me straight awey, as you can imagine. He explained what they suspected, but that we would just need to go back and see them in 6 months time. At Gareth's previous eye test three years ago in Durham, there had been no signs of any problem. So I came away worrying, and thinking `how can we not know for 6 months!' Then a week after the appointment, our optician rang me at home at 6.30 one day, to say, I'm not happy to wait 6 months, I'd like you to take Gareth to Boots Laser Clinic in Birmingham for corneal mapping. This we did last Monday. From there, the maps should have been sent back to our optician for referral to doc then Consultant. Anyway, I made a point of studying the maps quite closely, and tried to memorise what I could, in order to look it up on the net. His left eye has quite a large area of red, and the right eye less so, but still lots of red and orange. As far as I can tell from looking up corneal mapping, the colours indicates steepness of tissue, blue being flat, and red being the steepest. Do I assume then that he definitely has KC? Looking at maps of `normal' corneas, they are only blue, green and yellow...

[Amanda Stigle]

Hello Vicky
Yes, being told your child has KC at the age of 11 must understandably be a big shock to you and the whole family. But he is not alone, although most people get diagnosed either in their teens or 20's there are others like your son. Our chairman, Mike Oliver was diagnosed at 11 years and has not had surgery, he still wears scleral lenses. I daren't give you his age on line!But his children are young adults!- I am sure Mike will be glad to share his experience with you.
As John said every one is different but just because he has been diagnosed so young doesn,t necessarily mean he will have to have surgery. Only time will tell.
The good news is that you have time to get used to the idea,and to contact lenses and options before he starts studying for exams, and looking for a career. Also new advances in treatment that are at the trial stage now,such as keraform will be tried and tested and hopefully be available to you in the near future.
As far as the waiting time is concerned it varies from area to area. In most cases children don't have to wait as long. But you could phone the department and ask how long it will be, if no joy phone consultants secretary.
Hope this is of some comfort to you. If you have any further questions please don't hesitate in asking.

[Ian - Oxfordshire]

Vicky,

Please do not fear for your son! Keratoconus is scary when you first find out about it but there is so much that can be done with lenses and the right information.

I was diagnosed with KC in my late teens and am now aged 31 I still manage the situation with RGP corneal lenses. I am not alone - many of us will never have to see a surgeon - we just all become secondary experts in contact lens technology. Infact with the information that we all gain on lenses we could probably start up a very successful opticians chain!

I seem to remember "seeing red" on my cornea map but I am classed as having "mild" keratoconus.

I hope you get an appointment soon to put your mind at rest. Please remember you and your son are not alone and it's all credit to Boots that they have diagnosed it!

Best regards
Ian