UK Keratoconus Self-Help and Support Association

Hello, I had a graft on my right eye on the 15th Feb this year. Doing ok just got a few questions and wonder if anyone can help me please.

Vision..still blurry

1. My vision is still very blurry, currently on Dexamethasome 4 times a day, it is slightly more blurry after the drop of this, but never gets clear. Anyone know if this is normal or maybe the vision is still blurry as it's to early since the graft (full thickness and had had hydrops in the eye twice). Or maybe the blurriness is due to astigmatism from the stitches? Consultant seems happy enough, maybe its just the graft settling and im expecting things to be clear way to early, dont know.

Occupation health refferal/computer screens/humidity (lack of it...)

2.This is regarding work, I'm a part time youth worker for a city council. My gp returned me a on light duties for 5 weeks during which time was in the office, then returned to my normal 18.5 hrs of shifts out in the community a week.Just being careful, not lifting anything to heavy, mainly tabels or doing it with help. Have had no problems except headaches which my boss knows about. They have been very supportive of me. Howver personalle have now turned round and said they want me taken off some shifts a week till have seen occupational health. Not happy but have accepted it. Its all very backward surely they chould have done that (and ticked their boxes) when i first went back. Anyway sorry getting back on track, does anyone have any idea whats involved in this what is likely to happen at the OH interview? I do work at a computer quite an bit and take regular breaks. My prob is that the office is very hot and it totally dries my eyes out, they get quote dry anyway, i use celluvisc which helps. Have also tried keeping a bowl of water nr where im working to keep humidity. Would a small humidty unit help..if so can i get any help with the cost of this?

My next query is working the pc screen.As i saidi I do take regular breaks, can read it fine. I've heard quite a bit about flat screens r they better for us KC'ers, does size of screen make a difference?? Sorry im a wee bit confused. Although can nearly read everything (and yes still relying on no grafted eye here) are larger flat screen better/less strain on the eyes. My main probl;em with pc at work is get glare of it, it cant be moved coz of power supply/sockets.Any help available with the cost of a different screen if this is in my best interests ?

Headaches

3. Coming into land I promise friends. I'm getting the most horrendous headches the last one was 11 days and finally relaxed off with DIazpan. I mentioned it at my last hospital apt (East Grinstead), they said it isn't anything to do with your eyes/graft, see the doc if you're worried. So I did see my gp and he said it's prob tension headache/from your eye problems. Hmmm so in other words no-one is really helping, cold gel packs help but its a short term measure. I got headches before just they seem worse now for some reason..baffling. Are headaches a typical problem with KC/after full thickness grafts..if so does anyone have any advice on coping with them because they are really getting me down and just want to get on with living my life. I have managed to get 6 sessions of Acupuncture on the NHS starting end of April so really hoping they will help. Im terrified of needles..but also desperate for something to help.

Thanks so much for listening, dont know where we would all be without each other sometimes

Becky

1 Your surgery was pretty recent, so it is probably not reasonable to expect good sight at this early stage, but if you are worried, ask your ophthalmologist.

2 Print off the employers leaflet from this site
http://www.keratoconus-group.org.uk/sit ... tions.html

Your employer must make all reasonable adjustments to your workplace to accommodate your visual handicap. Mine provided me with a talking computer. Your employer will be able to get help from JobCentre Plus to provide the equipment you need.

3 I forget what they are called, but I find those gel-cold pack things that you tape to your forehead a great help with headaches. Do I understand you to say that ordinary pain relief is ineffective? It may be that working at a screen is not helping; when you are at your computer, remember to take regular breaks.

All the best

Andrew

in my job I meet lots of people who are hearing about keratoconus for the first time. I like to have a leaflet to give them: it saves lots of time.

Hi thanks for the responses.Yes Andrew ordinary pain relief is ineffictive and does nothing... I do already take regular breaks from the pc so suppose thats a start and gel p;acks are a help.


Becky

Hi Becky,
I had my graft 30th January, so only two weeks further on from you.
1. blurry vision. Yes, the drops make minie blurrier too. I think it is still early days - mine is so far fairly shap reading paper at about 5" but is getting more double images every week, and is apparently quite astigmatic.
I'd think it is too early days yet to know how it will turn out.
2. Occ Health. Don't know, as they vary from organisation to organisation.
Be aware that one thing they might be concerned about is your employers not being liable (legally, I mean) if they let you do something too risky and there's an accident - they don't ant you/your family suing the pants off them.
Big screens, other screens: I find a flat TFT screen much eaier to read than a CRT (conventional telly type) screen. As regards dsize - no, I didn't wnt a big one, as glare is my main problem, and the bigger the screen, the more light (and heat, a problem in summer/dry place) it emits.
FOr me, turning the colour scheme round so i have light letters on a black background helps, as the total amount lit up is less. There is a command in windows to do this, though you'll always find some programmes you want to use that have their writing hard-wired to black letters, so you get black letters on a black background, which is of course illegible! There are also specialist packages for "vision impaired people" (also some people with dyslexia or evere light sensitivity) hich will invert colour schemes, enlarge the screen, and enable you to flip between colour schemes, and magnify/shrink at the touch of a button. Oh, and set more legible mouse cursors, if that might help.
Big names for such things are Lunar from a company called Dolphin in WOrcester, Magic, Windoweyes.
If you have a branch of RNIB near you, try contacting them and aking if you can have a demo.
you should be able to get some help from Access to WOrk with costs and maybe training. Or maybe even a local SOciety for the Blind might be able to loan/lease you something for a hile till your graft settles down.
3. headaches.
SOrry to her this.
It might be because your brain is struggling to cope with a new and unusual type of blurry vision.
It is remotely possible they might be related to either the steroids (unlikely, ith eye drops, I'd have thought, but you never know), or some other medication you were given, including possibly an anaesthetic - some of them can leave headaches as after-effects, though I think you'd have to be as unlucky and unusual as me to be getting that bad headaches still from that source.
Is it possible you are getting dehydrated? - maybe if your body has been working hard to get the extra meds (including anaesthetics) out of your system. I still seem to dehydrate at the drop of a hat - and don't seem to have got really back into equilibrium after getting severely dehydrated on op day. Again, I think you'd be rare and unlucky to get this effect still from that, but don't suppose it would hurt to make sure you drink plenty of water/juice.
ANother thought: have you also had any feelings of stiff neck, or stiff and sore shoulders, or even headaches with prickles in the back of your skull?
If so..... is it possible you've cricked your neck, maybe peering at the computer screen at an awkward angle, or holding your head at a strange angle to read the newspaper, etc - or even from lying in an uncomfortable position during the op, with surgical instrucments, microscopes, whatever, pressing down on your face.
If this might be possible, and particularly if you get any twinges round your head/neck/shoulders, from my experience I can recommend a chiropractor (or an osteopath, maybe).
Hope they clear up.
Rosemary