New member, my KC story so far..

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

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

User avatar
John Smith
Moderator
Moderator
Posts: 1941
Joined: Thu 08 Jan 2004 12:48 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: Sidcup, Kent

Postby John Smith » Wed 04 Jul 2007 12:45 pm

Kaz,

Your optom may well be out of date - scleral lenses are now usualy made of RGP material, which permits lots of oxygen through.

Of course, it won't allow as much oxygen through as an un-lensed eye, but the effect is usually manageable.
John

User avatar
Eddie S
Chatterbox
Chatterbox
Posts: 246
Joined: Sat 08 Apr 2006 1:00 pm
Keratoconus: Yes, I have KC
Vision: I have Intacs implanted
Location: Leicester

Postby Eddie S » Wed 04 Jul 2007 1:12 pm

Kaz,

While you are at LRI admiring the lovely decor there is one guy there who knows his stuff regarding KC - Mr. Prydal. (he can be found on google if you need a pic!)

He doesnt often take appointments but does seem to appear half way through them and take a look at your eyes and advise the many students who seem to work there.

I'm there tomorrow. I think I need to go armed with a KCGroup poster as I havent spotted one so far.

With regard to light intolerance I cant speak highly enough of wrap round shades - I used to have a problem driving where I was at right angles to the sun. The wrap round style is really useful.

Take care.
Eddie
Somebody complimented me on my driving yesterday - they left a note on my windscreen "Parking Fine" which was nice.
KC managed with softperm lens in left eye, Intacs (2/11/07) in right eye

User avatar
GarethB
Ambassador
Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Wed 04 Jul 2007 1:15 pm

Eddie,

You have PM, us Midlands lot may yet take over :twisted:
Gareth

User avatar
rosemary johnson
Champion
Champion
Posts: 1478
Joined: Tue 19 Oct 2004 8:42 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: East London, UK

Postby rosemary johnson » Wed 04 Jul 2007 9:22 pm

Kaz's optom advised against sclerals becauseof an oxygen prroblem:
Oh, really?
i thinkin the old days when all hard lenses were made of PMMA (a chemical name for the substance more usually known as Perspex) there culd be issues getting oxygen to the eye surface. Without contacts, air is constantly wafting across the eye surface and oxygen can be picked up from there, directly or dissolved in tears. In contacts, one needs a constant tear exchange to bring in oxygen dissolved in the tears. Otherwise, the cornea can go into "oxygen debt" and start growing extra bllod veins to bring oxygen in via a blood supply.
In the old PMMA days, I used to have sclerals with little air holes drilled through them, so tears could wash inand out through the holes, and indeed bublles used to blowin and out. SOmetimes, I couldhear my eyes "click" as I blinked as the air/tears popped through the holes.
These days, hard contact lenses including sclerals, are made of one of a range of RIgid Gas Permeabble materials ("RGP" for short) which let the oxygen permeate through fro the atmosphere to the eye, and this problem is much less.
However, all contact lenses can reduce the oxygen supply to the cornea, and regular check-ups are important.
Of course, the healthiest thing for our eyes is never to dream of puttingbits of plastic in them - but then, how do we get about???? - and being allegeric to both cats and horses,, I don't think it wouldd be good for my streaming eyes to have a golden labrador inthe house, either!!
Rosemary

brian-ire
Contributor
Contributor
Posts: 32
Joined: Wed 27 Jun 2007 6:59 pm
Location: Ireland

Postby brian-ire » Thu 05 Jul 2007 1:33 am

Hi Kaz,

I had worked my way through all possible contact lenses until Ken fitted me with a scleral lens. I had gone to the UK with the intention of organising a transplant but I was advised to try a scleral lens first. Out of all lenses I've worn over the past few years the scleral has been the most comfortable and most stable. I hope you have an equally successful fitting when you visit Ken.

User avatar
Sajeev
Forum Stalwart
Forum Stalwart
Posts: 319
Joined: Thu 18 Mar 2004 10:56 pm
Location: London

Postby Sajeev » Thu 05 Jul 2007 3:15 am

Kaz, Your Optom is medically trained which may be the reason he knows something a bit more there. I can't explain more as the post will be deleted.

User avatar
Lynn White
Optometrist
Optometrist
Posts: 1398
Joined: Sat 12 Mar 2005 8:00 pm
Location: Leighton Buzzard

Postby Lynn White » Thu 05 Jul 2007 6:49 am

Kaz

Welcome to the forum and as an optometrist myself I will duck if you want to throw things at me! :)

As it happens, I spoke at the conference about many of the issues you raised. It may help if I explain WHY optoms are not so good about explaining or recognising KC.

Many years ago, it was quite common for hospitals to contract out to local optometrists to fit a whole range of contact lenses. This was the time before you could get implants for cataracts, so lots of elderly people needed high powered contact lenses. Seat belt wear was not universal and there were many damaged eyes from people going through windscreens and so on, and there were a great many optoms expert in fitting all sorts of strange and wonderful lenses.

However, there came a point when the decision was made in the health service to fit the majority of lenses in the hospital clinics rather than contract out. It made a certain amount of sense. You could have all the resources in one place and you could audit the performance of your clinicians.

Unfortunately, the side effect has been that optometrists in general practice have lost contact lens skills. As Dan Ehrlich pointed out in the conference, with the advent of disposable soft lenses, you are hard pushed to find an optom who can even fit a "normal" RGP nowadays.

This also means that many optoms simply do not have the experience of recognising and dealing with KC. I brought this up at the conference in my talk and someone from the audience suggested that the group might get involved in creating a database of people willing to be subjects for teaching/research.

Dan also pointed out that being a "subject" can be uncomfortable if you have a lot of lenses in and out!! This is true but in fact I have been thinking about this and you know, just having people willing to have their corneas measured or having optoms look at them and see if they can detect mild KC would be a fantastic help.

On a personal note though.... you are angry and upset because you feel that if your KC had been detected earlier you may not be in the position you are in now. Unfortunately, KC is not "cured" or even really retarded by any contact lens or procedure like intacs. C3R is showing great promise but it is still early days yet so it is very likely that even had everything been explained to you fully, you would still be where you are now.

The other point is that we never know how fast KC is going to progress.. if it does at all. So for this reason, no-one really gives you the full "tour" of KC at the beginning because there is no point worrying the life out of you if your KC does not actually progress at all!

I am not excusing optometrists here but am explaining there are a good many factors involved and most professionals do try to help. For many years, an optometrists role was seen to detect and refer, not diagnose. Many still practice like this because some ophthalmologists are not happy if the optom "diagnoses" and discusses options with patients before they have seen them and confirmed diagnosis themselves.

If you have any other issues about optometrists I would be glad to discuss them with you by pm.

You are now free to throw rotten tomatoes! :)

Lynn (taking cover!)

User avatar
Karl R
Chatterbox
Chatterbox
Posts: 289
Joined: Sat 05 Nov 2005 9:43 am
Keratoconus: Yes, I have KC
Vision: I have Intacs implanted
Location: Staffordshire

Postby Karl R » Thu 05 Jul 2007 7:43 am

kaz wrote:Karl R after reading your post am not as angry as I was before about the INTACTS issue so thanks for that, will try not to jump to conclusions next time.


Glad to be of some help

User avatar
kaz
Contributor
Contributor
Posts: 12
Joined: Mon 02 Jul 2007 6:47 am
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Leicester

Postby kaz » Fri 13 Jul 2007 7:24 pm

Lynn I understand where your coming from. It's just that you feel frustrated when it seems like other people are not doing as much as they could. Then again you will never know how if feels to have KC, or any other problem unless you have it yourself!

Anyway I had another question. Previously I mentioned that my KC was advanced, however as I am still waiting to be fitted with RGP lenses I was wondering how far it has progressed. Will I need to wait till my next appointment in 2 months time to ask about my visual acuity, k readings, thickness of cornea etc, or can I get this information by calling the hospital?

If I could share this information with you maybe you could advise me of how bad my KC is and what treatment options are still open to me.

kaz

morag
Regular contributor
Regular contributor
Posts: 74
Joined: Tue 10 Jan 2006 9:12 pm
Keratoconus: Yes, I have KC
Vision: Other

Postby morag » Fri 13 Jul 2007 9:41 pm

Gareth! Why do you refer to people having PM- could you please explain to me your definition of PM
Thank you
Morag


Return to “General Discussion Forum”

Who is online

Users browsing this forum: Google [Bot] and 68 guests