Quicktopic posts: Oct 2003

[ali]

Brian,

There is a visual effects simulator that I think you were interested in. http://www.surgicaleyes.com/visual_effe ... ffects.htm

Hope this is what you were after and I hope it helps.

Ali

[elizabeth]

I was diagnosed with KC 5 years ago now. Despite my best efforts and those of the staff at the hospital, I have been unable to build up a tolerance to the hard lens. I must have tried 20 different lenses but none suit me. I have difficulty inserting the lens into my eye and my eyes sting for about 10 minutes after insertion. This happens every time I wear them, even when I have ensured they have had a long soak to remove the cleaning solution. After just one hour my eyes are red and extremely blood shot (colleagues often ask me if I have been crying). I have also never been able to take out the lens without one of those little sucker tools. I have an appointment at the hospital soon and I feel embarrassed returning yet again without having increased my wear time from one hour every second day. HELP. Any ideas on how I can turn the lens wear into a less stressful experience would be welcome.

[David N]

Elizabeth
Do not be worried about returning to the hospital, KC is a real challenge to fit and they should and will understand this. I went through very similar episodes as you with RGP lens and gave up as my wear time never got above 4-6 hours which was ok (however not consitantly) but then my vision was awful for a further 1-2 hours such that I could not drive. I then tried softperm which was better but only increas my wear time at the best to 7 hours again with awful after effects, some nights I had to get up and check i had taken the lenses out as it felt they were still in.

That was some 10 years ago, I decided not to go down the scleral or graft route and perserved with glasses accepting my poor vision and migraines, until last year when my eye test showed me borderline to drive. My freindly contact fitter at my opticians said how about piggy backing (soft lens under a RGP)? It has been great not only do I have 6/6 vison if not better I can wear them for upto 14 hours with no ill effects so long as I am sensible the next day and give my corneas time to recover. It has taken a lot of appointments to get it right as you get some corneal remodelling and tolerance seems to be affected by whether the soft lens is negative or positive. Initially I was going weekly with most weeks a change of at least one lens. I am now stabalised and am upto 3 monthly review.

In short look at other options and persevere it is worth it in the end. My quality of life with lenses is so much better it is a miny miracle.

[Stoop]

Hey guys. Long time since i last posted a message on here. Been so busy with starting university an all. The grafted eye is still well, and my vision for the first few minutes of the morning is actually quite good, but soon seems to fade. Just a post to realy ask if any1 knows what support i can get if any. ill post again soon.
Ste

[eamonngillespie GILLESPIE]

hI janet,
i think they were rather upset that i did not inform them beforehand. I apologised like mad- they were okay. What i think made matters worse was that the guy from disability was using a worse case scenario which i think freaked them out (i would need special s/w, teaching assistant) i assured them that i was not that bad - which made them chill. The disabled person wants me to go to a meeting were i will be assessed - i am staying clear. He has the best intentions but it is all too much especially with the work load. Sorry i haven't return your call but its all hands on pump here at the mo. I will give you a shout this weekend.

bye for now
eamonn


>From: QT - Janet Manning <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic 6-A46Jzt4sJAXLTWnJNHsx
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: 5 Oct 2003 19:01:40 -0000
>

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[umbilica@umbilical.demon.]

eamonn said:
The disabled person
wants me to go to a meeting were i will be assessed - i am
staying clear.

Hmmmm!

It is worth knowing that organisations that deal with people
with disabilities can get government funding for doing
assessments. This can be up to 300-400 pounds. Of course, they all want us to come in for an assessment! - and get shirty when we refuse.

I don't know if this has anything to do with your person, Eamonn - maybe, maybe not; or maybe it is a uni health and safety rule.
The idea of the assessment is, theoretically, to work out what
our needs are and what equipment, etc, could help. Maybe for
some people these really are useful, helpful, reassuring, etc.
I've had a couple of useful sentences from assessors, and the
rest has been a total waste of time. When I was (finally)
registered as partially sighted my local authority said they
were going to come round and assess me and would bring the
registration papers to the assessment meeting. I said there was no way they were going to waste yet more of my time of useless
(supply adjective) assessments and they were to send the
paperwork NOW!!! - in the end, I had to go and collect it, which I did the following day, in my jodhpurs and riding boots and
brandishing my crop prominently!


Rosemary

--
Rosemary F. Johnson

[umbilica@umbilical.demon.]

Nassar said:
I got my contact lens for my keratoconus last tuesday, have had a few difficulties putting them in, getting better. I have been wearing them over the days for a few hours, more and more. But
the last two days i have noticed my eyes are a little bit red. Could you please let me know what it could be???

It could be that you've built up the wearing time a little too
fast and your eyes are getting a bit sore from the unaccustomer
lens wear. You could try taking it easy (ie. less wear a day)
for a few days and see if that makes them better, before starting increasing the time again.

Rosemary

--
Rosemary F. Johnson

[Guest]

I will not be accessing my email until 10/10/03, for urgent matters please contact the service centre on 0800 154 234 Regards, Aimee.

[eamonngillespie GILLESPIE]

Hi all,
in relation to the disabled person comment which i made i hope i did not sound flippant.
This person made all the time for me and put me really at ease......but sitting in that meeting with the Heads of Department made me incredibly nervous as though i was being tried for some crime, i don't want to feel like that again. KC effects me just as much as it effects everyone else, i am not happy about it,,,,but i think i will be more cautious who i tell in the future.


>From: QT - umbilica@umbilical.demon.co.uk (Rosemary F. Johnson)
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic 6-A46Jzt4sJAXLTWnJNHsx
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: 7 Oct 2003 23:32:52 -0000
>

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[Andrew Thomas MacLean]

I've been registered blind, and RNIB Scotland are going to do an assessment next Monday. I guess they're probably as respectable an organization as you could name.

I'll let you know how I get on.

By the way, the website insistance that "keratoconus does not cause blindness" is probably misleading.

Andrew