Quicktopic posts: Nov 2001

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

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Susan

Postby Susan » Thu 08 Nov 2001 5:02 pm

Hallo Andy, I live miles away in Oxfordshire but get treated at Moorfields as I was referred there when I went to work in London in 1970. From all I can gather grafts open a large can of worms! There is always the possibility of rejection and you would probably need a contact lens to correct the vision. I too have only recently been looking at this site and am not sure of all the abbreviations. What does the 'r' of rgp stand for? Susan

KPatel1512@aol.com

Postby KPatel1512@aol.com » Fri 09 Nov 2001 7:41 am

I believe the R stands for RIGID in RGP

Sue

Postby Sue » Fri 09 Nov 2001 8:56 pm

I have just moved into the 21st Century by going on-line so am new to this site which appears to be very informative. I was diagnosed with KC in 1976 and have attended Moorfields ever since. I eventually mastered RGP lenses in 1985.
I attended the conference earlier this year and would like to thank Anne, Mike, Phil and everyone else involved for all their hard work - I know how much effort goes into organising those sort of things.
I would be very interested to hear from anyone who has problems driving at night (or during the day)! I find my vision can be very variable, sometimes I can read numberplates, sometimes I cannot, but night driving is the real problem. During the day I wear very dark sunglasses with dark side panels (made up for me by a local optician)over my lenses to stop the glare but for obvious reasons cannot wear them at night. How does everyone else get around the problem of being 'blinded' by oncoming headlights? Does anyone else have problems with the new 'blue' type headlights? I find them very confusing. I often incorrctly believe there is a police car approaching with blue lights. I look forward to hearing from anyone with similar problems - especially if they can offer some advice.

My biggest fear is being told that I can no longer drive. How far down the sight chart do you have to be able to read to pass the driving sight test?

Smithbrown

Postby Smithbrown » Sun 11 Nov 2001 5:14 am

Sue

I have the same problem with night driving though I am lucky in that I only have bad KC in one eye so I can just close that eye when it gets bad. I also find my general night vision is appalling and I cannot make out where things are in the dark - makes for interesting times going down dark stairways! Yes I too find it weird with the blue headlights and always think they are police cars - it is normally when they are on the periphery of my vision - it can be very disconcerting! Can't suggest any solutions except to be aware of the problem or to have someone else in the car.

I always ask when I have my eyes tested as to whether I can still drive and I am always told that I am OK - you basically have to be able to read a number plate at so many yards (or should that be metres) - I think the details are in the Highway Code!

I have tried lenses of various sorts over the yearsand couldn't get on with any of them so I have decided to go for a graft operation in January - I am not looking forward to it but as I have no usable vision in my bad eye at all . . .

Robert


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Kate Love

Postby Kate Love » Sun 11 Nov 2001 8:34 am

Hi Sue
I have got to the stage of not being able to drive. I do have other eye problems in addition to KC. It was a depressing time, I felt that I had had my legs cut off, but when I feel down I just think that at least I won't have an accident on my conscience. I can't pretend that it hasn't cause problems, bu there is always a way round them. A taxi may seem expensive, but it isn't when you consider that you aren't paying out for road tax, petrol.etc. I teach, and the advisory service are now getting used to me phoning up to find out who else is going on courses so I can cadge a lift! Some of my friends would say I am very stubborn and unnecessarily independent at times! I live in hope of the powers that be suddenly finding some miraculous visual aid that will put me back behind the wheel! Keep smiling!

Susan

Postby Susan » Sun 11 Nov 2001 10:37 am

Hallo Kate and Sue, I have never been able to drive. I was diagnosed with KC when I was 15 and the problems with light have got steadily worse over the years [I am now 50!]I never go anywhere without sunglasses and also have to wear them even when I'm not wearing lenses.Being driven at night is especially hard. It is easier to sit in the back. Public transport was easy when I worked in London, but bringing up a family in a country village means that sometimes they have missed out on activities. I too, like to be able to go by myself-not always possible and kind friends have often taken me on courses etc.You just have to stay positive, be patient and do only what is feasible.

freddy

Postby freddy » Sun 11 Nov 2001 10:43 am

Dear all

It is an age since I posted.

I had to mention my experience of waiting for a donor cornea. I had little choice but have a graft and I was fearful that I should have to wait but no! I had to wait an extra few weeks for a re-arranged surgery date, but that was because the surgeon (who only visits my local hospital to see funny eyes) had his operating timetable changed by the hospital and he was on leave etc. I understand that one rarely waits here in UK, rather one waits for theatre time, or the surgeon, not the cornea.

I also had to post to say I had my graft in April. I struggled a great deal at first, not because of the graft, but because I could not work and though I moan work life without it is SO boring! But I have just seen the surgeon and he has told me I no longer need monthly appointments but will see me in 6 months. I had the stitches out in September and I can now be fitted for contact lenses and glasses, with my "new" eye so to speak. It is not a soft option but for me it has been worth all the aggravation.

I really do see better after the graft, but most importantly I seem to have a greater ability to cope. I used to get so tired. I can drive at night, read for hours, etc. It is honestly wonderful. I am back at work full-time and it is a delight, not a struggle now.

Hope you are all coping OK
Freddy Bull

Ian - Oxfordshire

Postby Ian - Oxfordshire » Sun 11 Nov 2001 1:13 pm

Night-time driving...

Hot topic this one, I have done some investigating but I am still unclear as to the way to resolve this and we all have very different cornea profiles so what works for some may not for others.

Has anyone (while passenger or parked) tried turning on the interior light ? This seems to make a big difference as the pupil shrinks. I find it causes too much glare to drive and I am not sure on the legalities. Perhaps for some the answer is larger optic lenses or pupil controlling eye drops. Sclerals may resolve this since the optic can be so much larger.

Check out this website:

http://www.surgicaleyes.org/ImageCenter.htm

This should help you explain to your Optometrist what you see with the ghosting/glare/halos.

If anyone has overcome the night time problems without a graft then please post it to the group. I'll keep trying to find a solution.

Cheers
Ian

Ian - Oxfordshire

Postby Ian - Oxfordshire » Sun 11 Nov 2001 1:27 pm

Also there is a simulator for your vision problems on http://www.surgicaleyes.org and select the "Image Center" menu and chose the Night time driving simulator - requires Flash. This website looks as if it was created for people post-PRK correction.

Additionally you can find out more information from the American Keratoconus Center:

http://www.kcenter.org - try searching their discussion pages...

As a group I am sure we can come up with something that helps us overcome this problem.

Ian - Oxfordshire

Postby Ian - Oxfordshire » Sun 11 Nov 2001 1:45 pm

Last posting for the day:

Interesting article on night time glare/halos experienced by post-Lasik patients.

http://www.refractivesource.com/doctors ... _pupil.htm

Also what can go wrong with Lasik and why pupil size can affect the end result:

http://www.lasikdisaster.com/hugepupils.htm


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