Quicktopic posts: Aug 2003

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

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Matt Phillips

Postby Matt Phillips » Sun 17 Aug 2003 5:19 pm

Hello scleral lens users!

I thought I would report an experience. The recent Amidose drought led me to take Ken P's advice when I bumped in to him at the Moorfields pharmacy (both of us) trying to get some sense out of the pharmacy staff! He advised trying Amo Lens Plus Purite saline solution to fill the lens when inserting.

Well I have tried it now a few times and several days on can report it works fine. I have had no problems with it, my scleral-using eye is comfortable for the whole day. The bottle is quite large (360ml) and I have a suspicion it will degrade and become less useable later on, but can't say yet.

The benefit is its cheaper, more readily available and you can avoid having to get a separate CIBA saline (or equivalent) for rinsing as the Lens Plus does that job.

It's good news that Amidose and the other saline options are back and the drought is over. However for me, and I daresay for others, there were problems finding these kinds of products and so the easy availability of LPlus has helped me.

sarah marsh

Postby sarah marsh » Mon 18 Aug 2003 2:24 am

stoop..... best of luck with your operation, keep us posted on your progress.
feel free to email me if you wish to on starlight7723366@aol.com.
sarah

Paul Trail

Postby Paul Trail » Mon 18 Aug 2003 7:37 am

Thanks for ur response tht has given me a rough guide on how long until my operation. The hospital of told me as soon as the cornea is availble i can have my operation. Good luck with your op today hope it goes well and look forward to hearing how you get on. Does anybody know if there is an eye bank in the north west region. I know there is one in London but not sure if that is available to patients outside of tht area. thanks. Paul

umbilica@umbilical.demon.

Postby umbilica@umbilical.demon. » Mon 18 Aug 2003 1:16 pm

Hi again Sue! - you're very welcome to keep asking questions;
isn't that what this group is for?!


>> weeks. Anyway my optometrist had suspected back in june that I
>> maybe was not getting on too well with Baush & Lomb cleaning
>> solutions or possibly I was not cleaning it off well enough.

Is that the stuff in the maroon-capped bottle that's a
milky-white colour and smells awful? - and three hours later
your fingers still smell of it? If so, I remember it well - I
tried it when I first got the GP sclerals, and rapidly went back to washing them in Fairy Liquid. I was taking up gallons of
rinsing water and still could smell the stuff.


>> My eyes have always been quite
>> dry and since being a small child I have always suffered
>> with slicky guey bits in my eyes at random times (my mother
>> and father used to refer to it as 'sleep' and would suggest I
>> had not washed my face well enough, even though on occassions
>> I could suddenly get these sticky jelly lumps several hours
>> after getting up).

I used to get those a lot - when I was a kid, dried in the
corners of my eyes when I woke up in the mornings (my parents
called it "sleep" too) and later when I got the sclerals, I'd
find the jelly-stuff under them if I left them in too long,
which could be quite a short time in the hay fever season. They seem to have largely gone away now, which could be the
difference between the PMMA lenses I started with and the GP one I have now. Or.... I suppose it could be something to do with
the asthma getting worse and the amount of steriods I pump into
myself...


>> bottle of miraflow and told that it is a solution which Ken
>> Pullum suggests (I am aware other people use this solution for
>> cleaning their sclerals) and told that if I was to use a tiny
>> little spot of it front and back before inserting my lenses I
>> may feel that they were more comfortable due to them 'wetting'
>> better.

I've tried Miraflow too - as a change from B&L/Boston, and in
comparison to them it felt a rather funny stuff. I've gone back to Boston now, as the Miraflow has some sort of an alcohol base, and I don't like the volatile-organic-chemical fumes close to my nose first thing in the morning as it's such things that get to
the asthma. But that's a separate issue.

As I understand it, Miraflow is - allegedly - a fluid that both
cleans *and* wets. Though in fact, I always cleaned mine with
the fairy liquid before using the Miraflow as a wetting solution. The other thing about it is that it is easy to rinse it all off, and so lose the effect of it. With B&L one spreads the wetting
sluid all over the lens, then rinses with saline (theoretically) or under the tap (if an old lazy slob) which rinses most of it,
and any dust, etc, away leaving only a thin layer wetting the
surface. If you rinse Miraflow that much, it will all have
washed away and you won't have any wetting left, so you either
don't rinse or have to do so very, very lightly and carefully.
(If you try to use Miraflow as a wetter in the way you use
B&L/Boston wetting solution, you'll see what I mean.)

But you don't need to panic about this! - it may say "cleaner"
on the bottle, but it is safe to use in the eye without being
rinsed away. (Well, generally.... I suppose some people may be
allergic to the stuff, as to anything else.)


Incidentally:

1. You do fill up the hollow side of the sclerals with saline
before you put them in, don't you?

2. If you take them out during the day to lubricate with more
saline, do you clean them again then? - you may find they are
more comfortable, and wet more easily, if you do. I have a
small bottle of fairy liquid at the bottom of my handbag for such things.

I'm impressed that you can take them out, relubricate them and
put them back - my eyes insist they need a break once I take a
lens out and get worse after a take out/rinse/put back than if
I'd just left them in.

Good luck with them!

Rosemary

--
Rosemary F. Johnson

umbilica@umbilical.demon.

Postby umbilica@umbilical.demon. » Mon 18 Aug 2003 1:16 pm

About the Acupuncture Study:

has anyone here been to do.volunteered for the acupuncture and
KC study we heard about at the conference?

I thought I'd be interested, missed catching Selwyn Dexter (the
person doing the study) at the conf, so tried to ring and
express interest.

Well, I had a couple of phone calls from unhelpful/obstructive
people who must have been his receptionists or maybe secretary,
and eventually a voicemail message from him, suggesting I write
in to his office to "apply", as it were.

Well, at this stage I was getting a bit pissed off - it isn't,
after all, that one gets so short of people who want
experiemental subjects that one feels inclined to want to bother to write letters of application, when one is doing them a
favour! So I haven't.

But the other day I got a very strange answering machine message from someone I didn't recognise, but who on reflection may have
been the name I was asked to write to about this. Except the
voice mail has now fallen off the end of the queue and been
deleted.

Has anyone else been through this palaver, and does anyone have
the address, or the name of the woman I was told to write to?


Rosemary

--
Rosemary F. Johnson

Steve Jones

Postby Steve Jones » Mon 18 Aug 2003 1:21 pm

hello all.

just a quick note for stoop hoop.
You may have a point about hayfever. There may not be a direct link but with sensitive eyes the symtoms of an allegy has an effect. I have hayfever quite bad as well as KC and the opticion says that any problems just add to the stresses of the eye, therefore it encourages over eye problems to develope.

Also hello to all and good luck with any treatments. you may have bad eyes but you may be a good person.

Steve Jones

Postby Steve Jones » Mon 18 Aug 2003 1:22 pm

hello all.

just a quick note for stoop hoop.
You may have a point about hayfever. There may not be a direct link but with sensitive eyes the symtoms of an allegy has an effect. I have hayfever quite bad as well as KC and the opticion says that any problems just add to the stresses of the eye, therefore it encourages over eye problems to develope.

Also hello to all and good luck with any treatments. you may have bad eyes but you may be a good person. Stevyj1@aol.com

KateF

Postby KateF » Mon 18 Aug 2003 3:22 pm

to sue
We're scleral beginners too. One thing I can remeber came across clearly was do NOT rinse lenses under the tap - too many things in the water - eg Chlorine, fluoride, - use bottled or cooled boiled water for rinsing. Hope that helps.

KateF & son Dale

Rob Armstrong

Postby Rob Armstrong » Mon 18 Aug 2003 3:32 pm

Hi Paul

I was told last year just before getting put on the waiting list that there is an eye bank in Manchester and in Bristol. I waited from June/July until early January for my op, but apparantly a backlog had built up because they were without a surgeon for a few months. So it probably would have been a shorter wait otherwsie.

Rob.

KateF

Postby KateF » Mon 18 Aug 2003 3:33 pm

Hi Savina
Some of the symptoms you have are the same for my son -
1) sunlight too bright especially if from he sides or low like in February
2) can't judge distances eg puts cup half on and half off the edge of the table
3) Low figure against ground perception - cant pick out things in muddly pictures but can easily identify same sizethings on white background
At the KC ocnference day I heard others talk about the starburst effects and how headlights go all pretty and bump into each other so you can't see where the spaces between the cars are!

Some of the other symptoms sound like ones my friends daughter has in connection with nystagmus - (sideways flickering movements of the eye, which every one has but can get out of sync in some) and the brain's attempts to clarify the info as it comes in muddled - the gaps in the letters and the pieces of colour that don't belong. Do you have mystagmus?

KateF


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