New here and hoping for some help/advice

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Chris_B
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Posts: 2
Joined: Mon 27 Sep 2021 7:48 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

New here and hoping for some help/advice

Postby Chris_B » Mon 27 Sep 2021 8:05 pm

Hello all.

I'm 34 and live in the UK.
I was prescribed glasses around 8 years ago when I was working in an office and was getting headaches from being on the computers all day.
I've been having eye tests every 2 years since and for probably 4 years the results would come back as only slight deterioration.
However, the following 4 years I noticed my right eye was deteriorating more rapidly than my left. My eye test 2 years ago showed a slightly worse progression but was told nothing out of the ordinary, though I knew something was wrong.
During my eye test in February this year, they noticed that my right eye went from 1.5 to 3! (They only changed my prescription to 2 as it would be a too big jump) They then looked closer and said that both eyes look like they are suffering from Keratoconus, but particularly my right eye. When they shone a light in they said it was 'scissoring'.
They referred me to the Eye Unit at the hospital and I had an appointment a couple of months later. The consultant didn't seem to think much was wrong, until another Dr came and shone the light in again and mentioned the 'scissoring'.
I was given some eye drops and told to come back in 4 months to see if the shape had progressed. I had this appointment last week and they said it hadn't really changed so I've got to go back again in 8 months.

I don't feel like I'm getting the help I need.
The backs of my eyes have been sore for as long as I can remember. I imagine this is from straining etc.
I have quite severe ghosting in my right eye. When looking at a word, pretty much the whole word is 'attached' to it underneath. I've also been very sensitive to light for years.

The treatment from my last consult was more eye drops (which don't do anything) and told not to rub my eyes. But I rub my eyes because they're tired and sore so it's hard not to!

Apologies for the long post but I need some help/advice please!

Many thanks

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gsward
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Posts: 203
Joined: Thu 24 Jul 2008 7:30 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: New here and hoping for some help/advice

Postby gsward » Mon 27 Sep 2021 8:44 pm

Hi, some of what you are describing is what we would recognise as the early stages of keratoconus. and it is not uncommon for repeat appointments to be quite far apart if progression is slow. You may get to the point when glasses no longer give you satisfactory vision. You may be at that point if you are noticing ghosting. Normally the first step are RGP contact lenses. However, given your age, you might be a candidate for crosslinking (CXL).

Can you tell us a little more. What are the drops you gave been prescribed? Which hospital are you attending?

Graham

Chris_B
Newbie
Newbie
Posts: 2
Joined: Mon 27 Sep 2021 7:48 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: New here and hoping for some help/advice

Postby Chris_B » Fri 01 Oct 2021 2:32 pm

Hi Graham.

Thanks for your reply, that's quite reassuring.
I'm not sure what the eye drops were as I think I threw them away :-|
I've bought some Optimex spray which I've been spraying on my eye lids for a couple of days now and they seem to help with the pain a bit.
It's the Royal Devon and Exeter Hospital

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gsward
Chatterbox
Chatterbox
Posts: 203
Joined: Thu 24 Jul 2008 7:30 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: New here and hoping for some help/advice

Postby gsward » Fri 01 Oct 2021 2:57 pm

If you haven't done so already it might be worth you watching the video at the bottom of our homepage Keratoconus: it's past, present and future

We also have a number of 'virtual coffee mornings' on Zoom through the year. The next is on Saturday 9th October at 11am. This one is a presentation and will cover CXL in 10-16 year olds, whilst not directly relevant to you, you may find it of general interest. On other occasions we have an informal chat on topics of interest. To join the meeting please request a link by email to chair@kcgroup.org.uk.

You would be welcome to come along.

Graham


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