Quicktopic posts: Mar 2003

[Janet Manning]

Hi Helen,
I got my lenses for more than 20 years from Clulow's Opticians. they offered an insurance scheme which made relpacing lost, broken lenses and even getting new ones cheaper. With new lenses at least once a year it was cheaper than glasses.
Once I was referred for transplants I got into the hospital system and started getting lenses for £40 each. I'm not sure what the criteria are - a certain level of eyesight I think or the need for specialist lenses.

I used to go to Guy's years ago and asked about lenses on the NHS. When I went for the assessment, the cost was going to be greater than through Clulows. (and more than I'm paying now on the NHS) I was still losing corneal lenses regularly at the time and there was no insurance scheme with the NHS!!! It was full price every time.

I think the answer is to make enquiries for your particular case.
Best wishes Janet

[sarah marsh]

to paul,
so sorry to hear of your cancellation, i was thinking of u all day aswell. i hope that you get a suitable donnor soon ! take care
sarah

[Andrew MacLean]

Thanks Sue

I see the hospital contact lens specialist at Glasgow's Gartnavel Hospital. Next visit I'll ask about sclerals (how is that pronounced?).

I've had to stop driving - my rgp lenses were not giving me sufficiently good eyesight to continue. Maybe the future holds new possibilities!
Anyhow, I have found this exchange page such a help: you can't know how much easier it is for me to look at the future (especially now, with all this pain and not-too-good eyesight as a result) to know that somebody else has the same experience as me. Thank you for your kind reply to my posting.
Yours aye

Andrew MacLean

[Naz]

Thanks sue and janet for your encouraging words!!!

I will keep in touch, and i apologise now if i start to bug you too much.

Thanks again

[Andrew Bosanquet]

Dear Andrew MacClean

I also have worn RGP lenses for 20 years (and PMMA for over 10 before that) and am getting the same problem. I am down to zero hours wearing time in my left eye and 8 hours in my right - just enough to get to work and back! I shall be asking about sclerals next, although Bristol Eye Hospital are trying to fit me with a semi-soft lens in my bad (left eye). (See also my next post).

Question for everyone: Does anyone KNOW for SURE what causes this intolerance? If we knew, then we could lobby for some research to try and get over it or get round it. I have assumed that it starts with oxygen starvation, but how does that cause pain?

Andrew Bosanquet

[Andrew Bosanquet]

I want to commend to you all the study with the Optometric Technology Group as posted on the website:
http://www.keratoconus-group.org.uk/kcstudy.htm

I partook last Thursday. It was very interesting and also revealing. The most important optical correction that I needed (according to a computer analysis of the shape of my cornea) was a sine wave correction to remove the too-low-curvature above the iris and too-great-curvature below. With the correction, the computer generated fuzzy 'E' of what I see now was brought into sharp focus.

The idea is to get 50 patients tested and then approach contact lens manufactures to see if they would make lenses with these more sophisticated corrections in them.

The other thing that I received was a very unexpected prescription for glasses. The last time I wore glasses was 35 years ago to help get my driving licence, but they screwed up my eyes something awful. These ones seemed much better, although they have very powerful cylinders in them – -6.5 and -7.5 dioptres – making everything very wide and squat! Apparently people find these difficult to cope with sometimes making them feel seasick. Anyone tried these sort of specks and got on well or had a problem?

Andrew Bosanquet

[Sue Ingram]

Hi Andrew, I have also taken part in the study for contact lenses for KC. You are right, it was extremely interesting. If anyone else is thinking of participating, it is definitely worthwhile giving up some of your time to take part - this is exactly the sort of research we need to try and help with KC. (I also had my cornea mapped for the first time ever).

I have a pair of glasses that I wear with my sclerals and the reason for this is the cylinders - not sure what the power is - however, when I first put them on it did feel extremely strange and a bit like I was floating. Also, everything that was round looked oval, e.g., a mug! However, it only took about half an hour for my brain to adjust (not sure what that tells you!) and I find them great - in fact I could not do without them. Take care SUE

[umbilica@umbilical.demon.]

Andrew said: sclerals (how is that pronounced?)


As one might say of a show-jumper who's just done a round with
zero faults:

His clear'll save the day for the team.

Rosemary

--
Rosemary F. Johnson

Listening in on Hal5/Juno speech equipment

[eamonn_gillespie@hotmail.]

Hi all,
i know all of us has this hateful problem (i feel a wee bit negative today). I know Sue mention the positive side of wearing Scelerals (hopefully spelt correct). I went to my local GP and told him that i want a second opinion. For those not up to date - i go along to a optometerist every 6 months to check the state of the KC in both eyes. He then informs me everything is grand. But everything is not grand. He does not see the difficulty of putting these RGP lenses in your eyes every morning and the utter pain that pursues (watery and bloodshot eyes)the Steve Wonder glasses. Please if there is anyone out there who can tell me how to get these things in your eyes in the morning without the forementioned pain i would be very much grateful. I am going to pursue the sclerals option...can an ordinary optician deal with this or has it got to go through the local hospital. Sorry about the self pity within this message...its just great to talk to people who know what is is like living with this condition,

Eamonn

[Andrew MacLean]

Hi Eamonn (1560)
No need to apologize for being honest! I have lots of bad days, and am now having the same sort of problem you describe.
There was a time (until about ten years ago) when I saw both the optometrist and an eye surgeon. Then the hospital restructrued and I now see only an optometrist. Like you I have a six-monthly appointment. The optometrist notes that I'm not seeing as well as I used to, but with all the lenses in her case she can't offer a new prescription that will let me see better.
As in your case she says 'everything seems fine'. Until quite recently I think she was right, but now things are not at all fine.
I've got an appointment to see my GP in the hope that he can put me back in touch with an eye specialist. In the meantime I'm going to pursue the question of sclerals when next I see the optometrist. If I get no joy with the hospital optometrist I'll probably go to the private sector to see if they can do anything for me.
Actually the optometrist whom I used to see in the hospital is now in the private sector, and although he doesn't work in the same city, it might be worth the train ticket to see him in his shop, just tob e sufre that the professional who I consult knows about and is used to working with KC.
I'll let you know how I get on (I couldn't get an appointment to see the optometrist in the hospital until September). Could you keep s posted on your progress?