Quicktopic posts: Dec 2003

[sajeev Nadarajan]

Hi John,
Thanks for reply. John, I totally understand your position; but please continue to keep us posted and tell us things that you are comfortable in telling us. Best of luck to you mate.
At least we are moving forward, in the fact that there are people (non-KC-ers who understand enough about our problems) who are still try to bring new treatments into the arena and not just accept the current treatment options available (when you also think that, this illness is fairly rare, as well).

Addtionally, I would like to add that from reading about INTACTS from comments from Doctors who has done trails in the USA, there are reports of high acception (and the emphasis being on acception) rating from KC-ers who has done INTACTS. Also I think it is cheaper for the NHS as well.

Sajeev
Keep your head up !!!

[Guest]

I will not be accessing my email until 15/12/03, for urgent matters please contact the service centre on 0800 154 234 Regards, Aimee.

[Dave D.]

Hi Folks,

I have lived with KC for over a year now and have posted here before.

Recently I have a bad time with it. To cut a long story short I ahd to visit the eye casualty dept. as my vison with the lenses has worsend and I have floaters with the odd flashing light in my eye, sometimes blue but mostly white 'pin heads' dotted al over my vision.

The Dr gave me some Sodium cholride drops from Moorfields and asked me to return after teh weekend saying my eye looked inflamed. On returing he said it had not improved and there was some scarring on my cornea and gave me some chloramphenicol onitment to use for a week.

I returned last week to be told to continue with the above drops for another week and also use some rewetting drops 3 times a day that he presribced.

My eye feels musg better...but I am worried about my flashes and floaters. He dialated my pupils and said could see why I would have flashing lights or indeed any floaters. I am wondering if this is linked to the advanced of my KC...as my vision has worsend at the same time?

Is it something to live with or should I be worried about my retina about to detach??? The flashing lights are like when you rub your eyes or get up quickly..mine are worse when doing any excerise or strenious work.

Any advice would be helpful..its giving me sleepness nights!

Dave.

[rosemary@umbilical.demon.]

Dave said:

My eye feels musg better...but I am worried about my flashes and floaters. He dialated my pupils and said could see why I would have flashing lights or indeed any floaters. I am wondering if this is linked to the advanced of my KC...as my vision has
worsend at the same time?

I think you mean he "couldn't" see why....?

It doesn't sound like any of the "usual" symptoms of KC that I
know of (note: I am not a medic). It's possible, I suppose.


Is it something to live with or should I be worried about my
retina about to detach??? The flashing lights are like when you rub your eyes or get up quickly..mine are worse when doing any
excerise or strenious work.


I'm not surprised you're anxious. Do you also feel dizzy at
all, like when one stands up quickly and the world spins and
flashes for a moment?

Just in case the flashes are due to something else other than
actually the state of your eyes, I suggest you could do worse
than go to your GP, explain the problem, and ask for a checkup. Start with blood pressure, particularly if you are getting any
dizzy feelings. And anything else your doc might think of.
Also, is it possible that you've been holding your head at
strange angles peering to see things better and have somehow
strained/trapped/something one of the nerves in your head or
neck? (Happened to me a few years ago and gave some very odd
effects - though not actually flashing lights. It did suddenly
"untrap" itself, fortunately, and I'm supposed to do a set of
neck and shoulder exercises to keep it OK.)


If you find an answer to the floaters, do let us know! I get
quite a lot of "grey streaks" in my vision, especially visible in bright light on sunny days, and am wondering whether they are
shadows from either rough patches on the cornea or scarring from past hydrops. No-one at Moorfields I've asked seems to be too
clear.


Rosemary

--
Rosemary F. Johnson

[KateF]

to Dave and Rosemary
NonKC people have floaters and grey streaks too!! I suppose that doesnt rule out a connection, but gives a better perspective. My daughter (no eye probs) has always had blue or black floaters, when she was 5 the consultant said its probably released redcells, and had she ever bumped her head! (had she ever!! Many times, nickname Reckless) and grey streaks seen against light can be strings of dried up redcells(rouleaux) which the usual mending mechanisms will clear gradually. (I get those, my eyes are healthy)
Flashes may be linked to neural activity ie migraine-type effect rather than the eye itself?? - i get coloured lightflashy auras or facial pain instead of headache sometimes, usually linked to tension or squinting trying to see without my specs or too much PC screen or missed meals (or red wine!) kate f!

[scott]

Hi all,

Thanks to all who answered me regarding the operation, i am nearing the time when i need to go for it, but hey ill get a good sleep and what about those nurses !!!

No seriously I go for op in 4 weeks time for my left eye, i had it cancelled 3 times, so here's hoping this will be it.

So many questions to ask but will take to long to post them all so if any KC after operation patient wants to chat to me give me a shout @ bubalike1@aol.com

[Dave D]

as always thanks for the replies!

the flashing lights could be tension as I also get pains running down my face.I guess if I had a tear or worse on my retina the eye dr would have picked it up when he looked into my eye with pupils dilated?

Wonder if it is somoething simple like blood pressure etc..I am 24 and cannot remember a time when I have had this checked? I am also feeling tired very easily and off my food, so a check at the GP would'nt do any harm.

Worried myself a bit more yesterday looking at the moorfields website reading about posteriour vitreous detachment, which would link with my symptoms, but again I hope the eye dr would have picked up on this?#

I have just found my latest coping strategy which is a pair of pinhole specs i bought...first thought of it when i get my eye tested at the hospital and i put on the pinholes to read the chart. I always get a good few lines further down, as I guess most people would would any eye defect? Not perfect but feels like a lot of pressure is taking off my eyes straining all the time.

Thanks again..back to hospital on wednesday morn so will give you the next update and answers to any questions!

Keep yer' peckers up!

Dave.

[umbilica@umbilical.demon.]

Dave said:

... tension as I also get pains running down my face.

....am also feeling tired very easily and off my food, so a
check at the GP would'nt do any harm.


That sounds very sensible - those combination of symptoms sound
liek they could be related to something else other than an eye
condition. It could just be stress - or something else. So a
health check-up and BP test sounds like a good idea. I hope
your GP can put his/her finger on the problem and get it sorted
for you.

It may be, of course, that you're just getting a bit too
stressed and the best medicine is a good holiday and the chance
to chill out and rest.

Hope you get it sorted, anyway. good luck!

Rosemary

--
Rosemary F. Johnson

[Jay1976]

Hi

Thought Id give u an update on my Hydrops

Was dissappointed at the Eye Hospital today as I got seen by the same Guy who I first saw..a little blase about Hydrops and knew next to nothing about KC.

Howver, than went to take a look at my eye and said its still the saem as it was 3 weeks back...which is rubbish as I can visually see the smearing of the water get smaller....such is life and the joys of attending a University Hospital!!!

Jay

[Andrew Bosanquet]

Hi all
A good news update for the holiday season!
Went to Oxford Eye hospital to be fitted for scleral lenses only 6 weeks after being referred from Bristol Eye Hospital! Thank you to Janet for the information about how to get action out of them!
Saw Ken Pullum for about an hour, also Ben Phipps; both very good. Came away with the same prescription for both eyes – left eye will then have near vision and right eye distance. Went back last week to collect them, but they had only made one! Learning how to put them in went very well – I must have remembered something from 40 years ago when I last had sclerals and hated them. No problems with bubbles and now up to 7 hours in the left eye – the eye that has not been able to wear a corneal for over a year.
Andrew