Newbie

[Sweet]

Sweet hello there!

I am so glsd to have found this site, am hoping to find some support from others who have KC and to maybe be of some help to others!!

I was diagnosed twelve years ago (am twenty eight) and have been wearing contact lenses throughout that time, glasses have never helped me from the beginning. I have a twin sister with the same condition but while she finds gas perm lenses fantastic and has no problems i have been in constant pain and discomfort for the last two years dispite going back and having new smaller and then larger gas perm lenses.

The main problem is that i am from Wales and have only now been told that i can get scleral lenses from Moorfields so i am a little behind!! I only moved here 11 months ago though i did trial out scleral lenses before i left but sadly missed out before the funding came in!

So i have paid for scleral lenses with the big hope that they will take away this constant pain and red eye.

My main questions as i need to wait 3 - 6 months to be fitted, is other than taking my lens out (i only have one in my right as my vision in my left is light only) what painkillers do you think help? As nothing i am taking as a nurse works, and also what can i do about my eye being red all the time? I work twelve hour shifts and only wear my lens in work and i take it out at every break which is three times a day, but nothing is helping. I use loads of eye drops as my eye is constantly dry and i clean my lens very well every night but im still at a loss. I cannot see to work without it so i am stuck.

I am worried as this is the only good eye i have, though am excited that with a scleral lens i can read five lines with my left eye having been told for about the last 9 - 10 years to give up hope in that eye as it was beyond help, and to have a graft!!! I turned this down a few years ago as i wasnt sure the time was right! Am so glad of that now!!

Please any suggestions would be greatly appreciated and i would value your opinion as i am off work sick again in pain and losing my patience!!

Thanks ... Claire X

[Lynn White]

Claire....

I am an optometrist who posts here so I hope I can help!

Firstly I am a little confused. You say you have paid for sclerals but are waiting 3-6 months to be fitted?? And where is exactly is "here" - where do you live? Who have you consulted about your eyes and what did they say about the constant redness?? I could do with a bit of information here as I think you will appreciate being a nurse - its difficult to advise without knowing any clinical details.

In the meantime - do try the drops Systane by Alcon. They provide a gel like layer over the cornea which cushions the lens when you are wearing it. You'll find others here have been helped by it.

Was there any reason why you are in pain and your sister not?? Is it a fitting problem?? Or are you just sensitive?

Have you tried the soft lenses at all??

Sorry to ask so many questions!!

Lynn

[Sweet]

Hello there, thank you for your quick reply!!

I am now living in London and i attend Moorfields hospital. There is a very long waiting list, i have waited 11 months to see someone and talk about scleral lenses. I have just paid for them and they are being made, but have been told to wait another long time for a fitting. I am going to phone occupational health in work as i dont really know what to do and i cant be off sick all this time.

I have never tried soft lenses only rigid and gas perm ones. The redness i only get when wearing it, but as i have left Wales and am now being seen in Moorfields i have nowhere to go in between. I have been to a few opticians in the area but they are reluctant to treat me without my notes and with KC which i find a bit strange as all i want is a lens to maybe see me through until i get these new ones (bad line there!)

As for the pain though i dont get it, true i have pain in my right eye wearing a lens, but then i have been sent home sick and so have left it out for two days and i am still in pain. Its everytime i blink or move my eye i get a sharp pain going through it. I have mentioned it to the hospital but they are not sure why i get it, and i guess i have had it so long now with a red eye that i am used to it, as bad as it is.

I just want to get some new lenses and try them out. I think most of this is because my eyes are sore and dry, i think i tried those drops a little while back in Wales, so will be looking to try them again and get a stockist here.

Im not sure how my sister is ok, i just know that her KC is not as bad so maybe that is it, she does really well with her lenses apart from a few odd days, but i would rather that than being in constant pain. Its not even that i hate wearing lenses, as i am constantly being told by well wishes to get glasses or leave them out and stop being vain, but it is becuae i am in pain and im tired of having to struggle through each day like it.

Thanks again and im sorry if i didnt explain it that clearly, i definately know how it is as a nurse to not have a good history! Im just wishing that the hospital will phone me earlier and say they have an appt for me! Thanks again!

Claire X

[jayuk]

Hi

WHen you say you have "Paid for them" but havent yet had a fitting what was ordered?

Usually at Moorfields you will be seen by Ken Pullum or three of this specialists.....depending on who is in on the day.

I can sympathise with you on the waiting element...been there and done that......and got very frustrated

It sounds like you MAY have an incorrect lens fit or your KC has progressed...but thats from a KC sufferer perspective......There are a handful of KC Opticians in London....so if you give us an indication I am sure everyone will chime in with personal experience / recommendations should you feel the wait is too long.

But do bear in mind, the cost of getting Sclerals PRIVATE is substantial..

[Andrew MacLean]

Hello

I think we all know what its like to have people wonder why we don't just wear specs! On the fifteenth time of telling, the story about KC begins to feel repetative, and people glaxze over and find it hard to know what to say.

About your eye being sore when you blink, even when not wearing a lens: I had that. At the hospital I attend they suggested that it was down to my eye being very dry and as the lit closed and opened, instead of riding on a film of tear, it "rasped" (my word) and removed the odd cell from the surface of the eye.

They gave me some artificial tears that I use, and this has removed the problem of pain when I blink. You can buy artificial tears over the counter at the pharmacist.

All the best

Andrew

[Mark Davis]

I am 28 and have just been diagnosed as having KC in my left eye. Can anyone tell me what I can do to alleviate the problem, will the problem get worse? Will I need surgery? Any suggestions will help me.

[jayuk]

I am 28 and have just been diagnosed as having KC in my left eye. Can anyone tell me what I can do to alleviate the problem, will the problem get worse? Will I need surgery? Any suggestions will help me.

Mark, sorry to hear that you have just been dagnosed.

Ill answer you Q;s in the order you have asked from my perspective

Can anyone tell me what I can do to alleviate the problem

Think positive, and dont see it as a problem!! Rather a challenge!. Work with your Doctor, Contact Lens Clinic / Opthalmologist. I guess what would be ideal is to find out how serious it is? Can you still see more or less without any correct? I mean without glass or lenses?

Will the problem get worse?

Noone can answer this. And if anyone does they are talking rubbish. Some people's KC gets worse, others stays the same for many years...its all bespoke and relates to your personally

Will I need surgery?

Again right now, more than likely not depending on the seriousoness. But remember that an alleged 10% of KC sufferers end up on the Corneal Transplant table. Of that 67% could have been avoided with correct lens fit! But what do this stats mean? Are they true? WHo knows!......But in all honesty surgery albeit intacs, grafts etc are all options when you KC has advanced.



Any suggestions will help me.

Try and find out how bad the KC is. Many years ago the first thing i did when I found out was to get a Corneal Topography done on my eyes. This was when I culd see pretty well without glasses 20/15. Over the years (9 years) my conditon got advanced and thus where I am at now. Dealing with KC is alot easier due to the Web, but you need to make personal calls on what medical profession tell you based on research and experience!

(Didnt mean t hijack Sweets thread!!)

[Lynn White]

Whoah!!

Mark - you may have been better starting a new thread yourself! This could get complicated trying to sort two people out on one thread! I am going to talk to Claire here and I think start a new thread for yourself!

Claire... I see - you have become a victim of the NHS really.... waiting lists and all that. Andrew echoes my thoughts exactly - that you were not fitted correctly and that you have very dry eyes. Dry eye needs to be lubricated all the time - the drops are not a cure - they relieve symptoms. Do try the Systane and KEEP using it.

My first instinct here would be to contact Moorfields and explain your predicament re work. If they are insistent you have to wait then in your shoes I would definately look at other options like trying to find a KC practitioner near to you who could try you in soft lenses to see if you could get any better tolerance in those. I have been fitting these lenses out in Trinidad where hardly any of the patients could tolerate rigid lenses (because of the climate) and sclerals were not an option as no-one made them out there.

They had a very high success rate and even if at first the vision was not as instantly as good as the RGP's - at least the patients could wear them while we were sorting the vision issues. It seems to me comfort is the main problem with yourself!

People with KC have, unfortunately, more sensitive eyes than anyone else and it is this that causes so much problem with contacts.. I would hazard a guess that the lens in the right eye is abrading your cornea or at least bearing down on it and that when you leave it out, you are so dry, your cornea is not healing up properly.

If you tell us where in London you live - I think between us we should find you someone whom you could consult in the meantime and who would be willing to talk to Moorfields for you....

Listening to your story makes me chafe at the NHS! In Trinidad - a supposedly non first world country - dealing with KC was easier because of private health insurance (the majority of people in work had insurance through their employers). We just went ahead and dealt with it like a normal contact lens fit after referral to a consultant (which usually took a week).

Lynn

[Sweet]

Jayuk - It is ok about adding to the post, hehe my thread got very busy there for a minute!!! Mark i hope you get the information you need, i know that Lynn has put a new thread for you which should help. I have only been here a few days but everyone is so helpful and supportive, im sure you will find that too!

Lynn thank you so much for your reply and advice, i think it is a lot to do with dry eyes as well and i need to find a stockist for Systane drops tomorrow. I do have artificial tears as well, as mentioned in Andrews post but i dont find them very helpful just very messy! But i think i could use them more.

I work in the royal london hospital in east london, so anywhere in that area would be fine. I have never tried soft lenses but at this moment i am willing to try anything that will enable me to see again!! I contacted Moorfields yesterday and was told that i cant make a fitting appt until the lenses have been made, so i guess i just need to keep on chasing them and see when that is. I dont blame them at all for the long wait, i know that they have a large patient caseload, but it is disheartening when they are talking of an appt in months when i was thinking in weeks!!! They are very approachable though and im sure that in time it will all work out

It is just hard especially as i work in the NHS to have to wait so long and be off work sick when i really cant afford to be. I will probably be going back to work soon though as although my employer is very understanding it never seems reasonable to be off sick because of eye pain and not being able to wear my lens!! Though it makes perfect sense to me and everyone else here im sure!!!

Again thanks to everyone here for all of your replies and advice, it has been so nice to come here and share with you all and have people who understand. I guess that after two years of pain i just needed somewhere to come and vent! All i hope is that in wearing this lens i havent made the problem with my cornea any worse.

I will keep you updated as to when my next appt is and go from there. Going to relax in a nice lush bubble bath now and forget about KC for a little while hehehe (Oh dear i might have even been advertising there for a minute and i dont even get paid for it but i dont care, a nice warm bubble bath awaits me!!!!)

Goodnight ... Claire X

[John Smith]

Hi Claire,

You'll find that the Moorfields experience is a more bureaucratic one than we'd all like; but of course, we put up with it because it's the quality of the ophthalmic staff that we care more about in the end!

I received my new sclerals about 2-3 months after the initial fitting for them. The good news however is that you only need to make a collection appointment for your first sclerals (as you have to be shown how to put them in and get them out... and I'm sure you realise that it's not obvious!). This is my second set of wonder-lenses, and I was phoned by Moorfilelds to come and collect them.

Much more civilised, as it turns out!

All the best,