Fear

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Judith Tomlinson Harrison
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Fear

Postby Judith Tomlinson Harrison » Sun 19 Mar 2006 10:55 am

I am terrified. Can anyone help me please????.
I have had high astigmatism in both eyes and nystagmus in my left eye for many years and coped very well with glasses.
Use computer at work but am classed as "Special Needs" and have large monitor and software which magnifies the screen and changes the colours for me.
I have now been diagnosed with KC and have an appointment on 27th March, a week away, to see about NHS hard lenses.
All I have read about KC indicates that it happens in teens or early twenties, I am 57.
I have read a lot about dry eyes but I have become aware in recent weeks of excessively watery eyes, so much so that people think I am crying and I have to mop up the moisture a lot and carry a hanky with me at all times.
In my childhood I had a squint operation and had the trauma of having stitches removed with a needle. That and another traumatic incident has now been triggered. A few years back the local hospital managed to get a lens in one eye for literally 10 seconds. I screamed at the Dr to remove it and vowed "never again"
I really cannot stand anyone, including myself, touching my eyes. I have read other peoples accounts of how they insert lenses and tried to hold my eyelids as described but I cannot do it. I am an extremely excessively nervous and frightened person and want to chicken out of this appointment because I know it will be a nightmare and traumatic. Trying at the moment to reason with myself to make myself go.
If I do not, or cannot wear lenses, what happens to my eyes over time?
Is there any alternative?
I really do not think a graft would be appropriate as I have a phobia about anaesthetic and have to be heavily sedated before having any anaesthetic, If the graft op is done with only a local one, could I still be heavily sedated? Assuming of course the op was appropriate anyway which it probably wouldn't be because I am in the early stages of KC and would involve a long waiting list.
Do I have the right to a second opinion on the NHS or do I have to use the referral I have been given. Will the watery eyes mean I cannot wear lenses (a great relief that would be)
I have so many questions and suppose these have been raised by other people.
I have never felt so frightened in my life and I lie awake at night trying to imagine what this appointment will be like and what the future holds.
Please can anyone who is of a nervous dispostion tell me how they got through all this and help???
Judith

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GarethB
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Postby GarethB » Sun 19 Mar 2006 11:08 am

Judith,

Firstly, as soon as you see the optician at the eye unit, explain your concerns. They are very understanding and I know the unit I go to in Coventry have encounterd people who have a fear of things in or near their eyes.

Before contemplating lenses, your first visit will be a routine eye check to establish you current level of vision unaided and aided if it is currently. They may also do a topographic scan. This basically involves resting your head on a small rest and leaning your forehead against a bar and looking at a blue light (it was for me). No one will touch you here as the optom is looking at a computer screen.

You may then have soe dilting eye drops which for me just felt like something cold but sooting just dropping on the eye and after a few seconds the feeling had gone. The consultant will then examine your eye.

Based on this they will make recomendations and from there it is UP TO YOU. If they recomend contact lenses you are allowed to say NO.

Depending on the level of KC they discover you may well be able to cope fine with glasses of a more complex prescription. At the end of the day it depends on how you feel and the level of vision you feel you need to function. If you can cope with corrected vision with glasses that just meets or misses the driving standard, but you can do everything else, this may be fine.

Above all you are incontrole and can take a friend if that will help. They can intervene and ask the optom to back of if they see you are getting worried. They will also be good at taking notes for you. It is very eay to missunderstand or forget information given when you are in an environment you are uncomfortable in.

Go for the appointment, take a friend, put across your concerns, find out the fact relevent to your case and then make your decision a to how and where you would like the treatment to progress.

Good luck.

Regards

Gareth
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John Smith
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Postby John Smith » Sun 19 Mar 2006 12:03 pm

Hi Judith, and welcome to the forum.

Firstly let me try to reassure you - the later your KC is diagnosed, in general the less it progresses.

In fact, with modern equipment it is much easier to spot than before, so it is possible that you've had it for years and not known about it. So the likelihood of you needing contacts or a graft is not overly high. But we are all different, so I agree with Gareth's advice - go along to the appointment and find out the facts.

We are all living proof that KC is never as bad as it sounds when you're first told; and we're also all here for you to answer any questions you may have.

Also, if you send Anne your address, she'll post you a stash of literature to keep you informed, too.

All the best,
John

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Louise Pembroke
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Postby Louise Pembroke » Sun 19 Mar 2006 1:05 pm

Hi Judith I really sympathise with your fears and keep talking here, it will help you. I was once totally phobic about putting lenses in because I'd had problems, this was a long time ago. What the lens practitioner did for me to help me gain confidence was to put a drop of local anaesthetic in my eye so I didn't feel the lens going in. I did this a few times, then I regained the confidence to put the lens in with just artificial tear drops.
The other thing is, if you take a friend, if the practitioner puts a lens in for you, hold your friends hands tightly. I've done that before when I was afraid and it helped me.
It really IS possible to be ok with lenses Judith, and as John said, the later the diagnosis the better. You'll probably never need a graft.
Director of Sci-Fi and Silliness and FRCC [Fellow of the Royal College of Cake]

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Postby jayuk » Sun 19 Mar 2006 1:54 pm

Judith

Not alot to add from me as the other responses have been extremely real and valuable!

In terms of Fear.....I share your concerns! Prior to my diagnoses I absolutely could not stand the thought of even looking in the slit lamp; let alone having contact lenses in!....When I first got contact lenses it took me 3.5 hours to get one in!!.....I think I can say I hold a world record on that!...YES! I sat, stood, walked etc around for 3.5 hours for ONE contact lens!.....The thought of the lens being put in my eye just scared me sh*tless!!....However, over time, and the eye getting used to the lens; things got better!..

All I can say is things do get better as you get used to them!.....but also; try thinking about the benefits of seeing with the lenses against what you can see now?......sometimes we need to go through a little uncomfort to reach the comfort!

J
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP

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Louise Pembroke
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Postby Louise Pembroke » Sun 19 Mar 2006 1:56 pm

I share your record Jay, I paced the contact lens dept shouting at the plastic on my fingertip for entire mornings or afternoons in my youth!
That's another tip actually - get angry with it and shout at it!
Director of Sci-Fi and Silliness and FRCC [Fellow of the Royal College of Cake]

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Alison Fisher
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Postby Alison Fisher » Sun 19 Mar 2006 2:19 pm

Oh my - I thought I was the only one who took hours to put lenses in. I wish I'd had access to a resource like this place back then, but we are talking about twenty years ago (gawd, that makes me feel old :roll: ).

Judith, all I can say is that your fears are totally understandable. Knowledge is power though, so read up all you can and hopefully that will help you feel more in control. I was a mental mess at my early hospital appointments and with hindsight I should have done things very differently, starting with asking far more questions than I did and also having someone supportive with me.

Take care and I hope all goes well for you on the 27th.

Alison

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Sweet
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Postby Sweet » Sun 19 Mar 2006 2:51 pm

Judith,

Hello there and welcome to the forum! It is a big thing to be told you have KC but as already said getting diagnosed later is not a bad thing.

I would agree with everyone here and say to go to the appointment but i would taske someone with you as well. If you don't go you will make yourself more worried with all the what if's! What treatment you decide to take is entirely up to you,, and no it doesn't always mean lenses and a graft.

We are all afraid of different things. I was and still am the easiest person to fit with lenses and am able to have a lot of tests done on my eyes with no problems at all. But when i came to having a graft done i completely panicked! The thought of waking up and seeing what was happening terrified me for weeks even with being a nurse and knowing it would all be ok. Now i look back and see that it was all ok, nothing bad happened and of course i didn't wake up! The more we stress and worry over things the worse it gets and our imagination just runs away with us!

Now i have absolutely no problems with having stitches removed but due to some getting accidently broken there is NO way i'm letting him take out anymore!! LOL! So please don't stress over fears and worries, we are all so different, but posting here and getting some advice from others who have been there really does help.

Take care and do keep posting, love Sweet X x X
Sweet X x X

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Judith Tomlinson Harrison
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Fear

Postby Judith Tomlinson Harrison » Sun 19 Mar 2006 2:59 pm

Thank you all for your comments. It helps such a lot to know others have been before me on this road.
I will keep logging into this forum because I can see already that people understand how I feel and that I am not alone with this fear.

I had the topography test about 3 weeks ago but they were unable to get a reading from my left eye due to the nystagmus which is an involuntary movement. I have been sent another appointment in April to repeat the test on a different type of machine. I found also a nystagmus forum (similiar to this one) and have joined that too. I intend to find out as much as possible before my appointment so I know what questions to ask.
I also belong to an organisation (through work) that provides private help with a lot of medical conditions. Am going to find out if Visual problems are covered and whether they will fund private treatment. I want more then one opinion on what treatment is necessary before proceding.
I am still very frightened and being a worrier as I am wonder how I will manage to put any lenses in if it takes so long at the beginning. I rise each day at 5-30am and leave for work at 7am. Am not prepared to get up any earlier as 5-30 is early enough for anyone, too early for most. On return from work I am usually very tired so would not want to subject myself to any trauma. It will probably have to be a Saturday and Sunday only task to begin with.
Know I have to be more positive but it's hard.
Thank you all, keep the messages coming. They are much appreciated.
Judith

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jayuk
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Postby jayuk » Sun 19 Mar 2006 3:50 pm

Judith

The initial stages do require alot of patience....especially if you are new to lenses....but it can be done........once you have the confidence and calmness.....but this also does take time to attain!.

It also depends on which types of lenses you wear...RGPS (gas permeables) take longer to adjust than Soft Lenses......however each and every persons experience are different.....

J
KC is about facing the challenges it creates rather than accepting the problems it generates -

(C) Copyright 2005 KP


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