A Few questions

[houghy]

Hi, I'm new to the boards and would like to say hello. I was diagnosed with Kerataconus about 10 years ago and didn't see it as much of an issue as I could cope with wearing glasses and also suffer from another health condition that was taking up most of my thoughts. Also at the time the Dr I saw did not go into much detail on what Keratoconus entails However recently my left has had a sudden change and I'm going to get contacts fitted tomorrow. I have no probelms with contacts but to me glasses are easier and less time consuming. I have a few questions

Can contacts be worn all day say from 7 in the morning to about 11 at night

My eye which is affected the most seems to be more watery, is this part of keratoconus.

I've looked into Corneal collagen cross-linking riboflavin and was wondering how many people have tried as all the health professionals in the UK I have talked to have dismissed it

Is there anywhere that shows what possible side affects there could be from Corneal collagen cross-linking riboflavin treatment

Any response would be greatly appreciated

[jayuk]

Houghy

Welcome to the board!

To answer your Q's

Can contacts be worn all day say from 7 in the morning to about 11 at night

This really depends to be honest. People have varied wearing times, some can tolerate more than others. But I could wear my lenses for a similar amount of time.

My eye which is affected the most seems to be more watery, is this part of keratoconus.

Watering can be an affect of KC, although excessive watering should be raised and looked into

I've looked into Corneal collagen cross-linking riboflavin and was wondering how many people have tried as all the health professionals in the UK I have talked to have dismissed it

Really sad to hear this, as to dismiss it now is simply mindboggling especially as theres now more than ample datat to confirm that it stops the progression of KC in majority of the cases(possibly all many would argue).

Is there anywhere that shows what possible side affects there could be from Corneal collagen cross-linking riboflavin treatment

There are a few studies to date on this, but none really have shown "side effects" as such, as to be honest, the treatment is merely 6-7 years old..which is very young in medical terms...

HTH

Jay

[Andrew MacLean]

Can contacts be worn all day say from 7 in the morning to about 11 at night

My eye which is affected the most seems to be more watery, is this part of keratoconus.

I've looked into Corneal collagen cross-linking riboflavin and was wondering how many people have tried as all the health professionals in the UK I have talked to have dismissed it

Is there anywhere that shows what possible side affects there could be from Corneal collagen cross-linking riboflavin treatment

Any response would be greatly appreciated

Hello, and welcome to the forum. I do not know of anyone who wound advocate wearing a lens from 7.00 am to 11.00 pm but if you needed to start wearing a lens early and finish late, why not take it out for a couple of hours in the middle?

As to C3R, I think it depends upon who you talk to. Some ophthalmologists in the UK are offering the treatment, but you should be aware that it is not being offered as a cure for KC.

All the best

Andrew

[Sajeev]

Houghy welcome,

The possible "side effects" to X linking:

1) Is infection (has not happened so far, but a possiblity as with all "surgery")

2) A haze, which clears up with in weeks

3) If done with in the guidelines, there are no other side effects thats been seen.

Best

[houghy]

Thanks for your response it was greatly appreciated. I was wondering has anyone had a NHS opthamologist recommend Corneal collagen cross-linking riboflavin.

[Sajeev]

Good question Houghy,

Currently there is a trial going on with in the NHS... and at the same time you can do it privately with them to, but because its new for them they will not go out and recommend it to you, if anything its done IF there is progression, if there is none then there is no point in doing it, unless you want to be pro-active for just in case progression happens, its better early on as well... some Drs are more pro-active for the young.

If you PM me with your email (BTW you must send me an email), i will send you info. of personal experiences by email. (my PM is not working properly going out)

Best

[Sweet]

Houghy

Sweet hello and welcome to the forum!

I can't talk about cross linking as i don't know a lot about it and haven't had it done.

I wear a RGP lens in my right eye for about 15 hours a day, although this is not really advocated. Most optoms say that 8 - 10 hours should be the max but it is really up to you. I always have a day off though once a week.

Wishing you all the best with lenses, do let us know how you get on!!

[houghy]

One thing that did worry me was that tehy said they couldn't get a reading for the left eye.

[Sajeev]

Houghy, Is that with Corneal Topography, if so then either it needs to be repeated using another machine/make of machine or the KC is too advanced for it, or even it could be that the eye was not still enough while looking in to it for the test.

Keep a check on the thickness of that cornea (the progressed one on the left, where a topography could not be done) if you can at all.

[jayuk]

Houghy

Your best bet would be to get seen by a place that offers if, if thats something you want to progress with.

Have a ganders at this log, which covers my treatment of C3R. Any questions, feel free

http://www.keratoconus-group.org.uk/for ... hlight=c3r

hope that helps

Jay