Quicktopic posts: Feb 2004

[Annie-Marie]

I have been trawling through messages looking for info as I go to Oxford for a Scleral Lens fitting (I Hope) tomorrow by a man I have not met but I will christen 'the great Ken'! I hope it works because it is the last chance saloon before an op.
While scratching around for Info I noticed a lot of posts about eye drops and dry eyes.
Can I just say that my office have bought me a humidifier to sit by my desk.
I have started using Visulize Eye drops both Moisturise and Herbal Comfort and I would not be without them!
The Moisturise work well on dry lenses and the Herbal Comfort are great if you eyes are a little tetchy.
I get mine from Boots.

[Dave D]

Hi Guys, hope all is well?

Since my hospital does not have a contact lens clinic I am resigned, at the moment, to buying my lenses from the high street people!

I seem to remember someone mentioning ages ago about a form so that you can claim back some of the costs due to the CL's being a nessecity due to the KC.

A HPMG form or something like it??

Dave.

[Paul Lewis]

Hi all,

This is my 1st post to this newsgroup to bear with me. I was diagnosed with Bilateral keratoconus around two years ago and have changed my glasses perscription 3 times since then. I am thinking about getting contacts, but have no idea what kind i will have to get? Hard/soft/Gas pourous?

Also i asked my opticians (Vison express) and they were helpfull but seemed to lack the knowledge to help me past the 'you have what?' stage.

Any help would be greatly recieved,

cheers
paul

[Rob Armstrong]

Hi Paul,

If you feel that you are no longer getting satisfactory vision with glasses, then the next step along are usually rigid gas permeable contact lenses (RGPs).
If you can, try and get yourself referred to your local hospital to get these.

If it is more information about Keratoconus in general that you are looking for, a good place to start is the accompanying website to this forum, (in case you haven't come across it already).

It's at: http://www.keratoconus-group.org.uk

If you've got any more questions having read through the above site, then don't hesitate to ask.

Hope that helps!

Rob.

[gemstone@umbilical.demon.]

Anna, your horse sounds lovely!

I hope the op doesn't keep you out of the saddle too long - now, why do I suspect the docs' line may be "Riding will be fine,
it's falling off you mustn't do"? - as if it was that easy!

But you may have to budget for livery charges for a while,
because of the lifting and other hard work. Unless you have a
kind friend, of course, who might come and "do" him for a while
for you? (You aren't anywhere near north-east London, are you??)
Oh, and you'll be on immuno-suppressants for quite a while, so I suggest you check your tetanus jab is up-to-date.

Rosemary

--
Rosemary F. Johnson

[Dave D]

Hi Folks,

off the the eye specialist this week and wanted some quick advice first.

First question is KC related, can the specailist/consultant refer me to another hospital? The one I currently attend does not have a contact lens clinic and wondered if it had to be my GP who did this?

Second not KC realted, I don't think but linked to eyes! Over the past few months I have had a great reduction in my vision for distance quality, combined with a viterous detachment (floaters) and a constant little white flashing lights when I look up at the sky.

More worrying recently I have had pain in and anround the muscle area behind my eye combined with numb headaches behind my ears. My sight in my left eye has gone very weried and it is quite difficult to explain but it is like I can only focus on one thing at a time, meaning I actually have a wide field of vision still but I cannot interpret exactly wha it is unlike I focus my central vision on it. Reading is the best example, normally you can scan a page or a line as you read but now I have to read one word at a time and then onto teh next??

It as if my left eye is constantly 'crossed' and my only useful vision is in teh centre...I see but I don't see..imagine saying that to the eye guy!! He would be wll impressed.

Anyway keep yer' chins up!
Dave.

[Sarah]

Does anyone know anything about corneal inserts or 'intacts'? I've been wearing gas permeable lenses for 14 years but am now intolerant and don't like the sound of a transplant. I can't find an eye specialist in the uk who seems to know about intacts which is surprising since they were approved for sale around Europe in Nov 2003. There has also been some promising clinical research...

[Mohammed]

I've just been diagnosed with KC. my left eye is really bad can't reallly see any thing with that eye, but my right I is much better although it is KC'ed. I just need some advice and reassurance that KC is not that bad. I've just found this discussion group on the Internet. Also I've been told by the doctor that'll need an operation when things go really bad. That's what frightening me the most. Anyway how common is KC? I'm 25 years old, is it uncommon in young people, I just need some advice. I've been booked another appointment for fitting contact lenses in. Does KC drastically change lives, is it easy to live with. And how do you think I've got before the dreaded operation.

Any and all comments most welcome.

[TJStim2299@aol.com]

Hi there,
Try not to worry. I am 31, I got Keratoconus when I was 19. It is most common when you are in late teens to early 20's - so you timed it right! I'm not going to kid you, I found it tough to have contact lenses that fitted, after years of trying I finally had the operation on my right eye - its a cornea transplant - I now can see 20-20 with glasses!
Everyone is affected differently - get has much info as you can, don't be afraid to ask your optican, its is quite rare about 1 in 2000 people I believe. Let your friends and family know what is going on.

I hope this is enough to be getting on with. Please email direct at: TJStim2299@aol.com if you would like too.

Thanks,

Tim

[Craig Thornton]

Hi everyone. I have had keratoconus for several years, and only just found this group. Wish I had found it earlier! At last I can talk to people who know what I am going on about!
I have keratoconus in both eyes; my right eye is quite bad, my left not that developed at all. So I have one small lens and one huge lens!
Just wondered how long you all tend to wear your lenses? Due to comfort, I can manage about 8-9 hours a day, so tend to put them in just before lunch. I used to wear them longer but it made my eyes too sore. Luckily the vision in my left eye is quite good so it ends up working hard early in the morning to concentrate on things. I suppose it is similar to not having vision in one eye and the other compensating.
Now to ask something really odd, which I'm too embarrassed to ask my lens specialist! When staring/concentrating on things and NOT wearing your lenses, do you ever see the distorted image expand and contract, at about the same speed as your pulse rate? Maybe it's just me....!
To anyone who has trouble with their lens specialist, I would recommend pushing and pushing until you see someone who CAN help. My first "specialist" gave the "great" advice of just leaving one of my lenses out when I could not tolerate it! I complained to my GP and he referred me to Queen's Medical at Nottingham. Now I see one of the top specialists in the country.
Sorry to have gone on, but it has been such a joy to find this group!
If anyone wants to drop me a line, feel free:- craigthornton@btopenworld.com