Scleral lens problems

[Dolphin]

Hi, this is my first time on this site. I have had KC for about 8 years now and have worn scleral lenses for about 5-6 years. When i was first diagnosed and i could no longer see out of glasses i was tried with numerous pairs of lenses, with no success. I was then referred to moorfields where i was given scleral lenses, which were brilliant.

Over the past few months i have been having problems with the tollerance of them and i am now becoming a bit worried that there is nothing new out there for me to try. It started with seening rainbow coloured halos when i look at lights but now my eyes go bright red as if i have an infection, which was ruled out. I was just sent home from my local A+E and told to rest them, which i did. I can now only manage an uncomfortable 4-5 hours before they start going red.

I phoned my local consultant for an appointment, which to my supprise i got on the same day but to my dismay a message was left on my answerphone just before i was going to leave, to inform me not to bother coming as there is absoloutly nothing that they can do for me. Obviously i was very distressed as i was basically told that my life was over . I am a 3rd year student nurse and i am now worried that i will have to give it up.

Because this happened i phoned moorefields up and have an appointment on Wednesday coming. I am worried that i will go up there just to be told not to wear them and be sent home. So what i was wondering, has there been any new contact lenses for KC over the past 6 years that i can go in and suggest trying if i am told i can no longer wear sclerals?

I am normally very possitive about my eyes but after that message on my phone it has really scared me. I have worked really hard to get where i am and i do not want to give it up, after all, i am only 36.

Kind regards
Dolphin

[Andrew MacLean]

Dolphin

Welcome to the forum. I got to the point where I couldn't cope with scleral lenses; something to do with a lack of oxygen getting to my eye. My eyes also went red. I was way down to an hour max per day, then I stopped using my scleral altogether.

There are other lenses that you might try. Also there are surgical options that can be explored.

Among the new lenses there are some 'soft' options.

Do not give up! There is a long way to go before you come to the end of the road!

Andrew

[rosemary johnson]

Dolphin, hallo and welcome to the forum.
sorry to hear you've been having these problems recently.
I've been wearing scleral lenses for, oh, gosh, errrrrm, whisper it, over 32 years now. And I recently started having problems with a new lens and seeing misty clouds with rainbow edges round lights.
First, please do not panic that no-one at all can do anything to help. Scleral lenses are a "minority interest" and a very specialist area. I rather suspect that the attitudes you've had so far are more a case of "Oh, sclerals! We don't do anything with those here" rather than knowing there's nothing that can be done.
I'm sure you're doing the right thing by going up to Moorfields to see the sclerals experts.
Is it the renowned Ken "Mr Sclerals" you see? - if so, you're in good hands and do say "hi" from me to him.
There could be a variety of reasons for the redness - anything from eyes changing shape so the need a new fitting, to the eye not getting enough oxygen through, to contamination.scratches onthe lens.
Hope you gt it sorted out - good luck and do keep us posted.
There are a great variety of possible lenses for KC now, including some soft and soft/hard combination lenses. There's also the option of "piggy-backing", with a (daily disposable, in my case) soft lens under the scleral to act as a cushion between the lens and the eye - I got a very marked increase in wearing time doing that.
For info - and this may or may not be at all relevant to you - the reason I was seeing the misty clouds and rainbow fringes round lights was diagnosed (by A&E, after I'd gone in there in panic) as being due to the pressure inside my eye having got too high, and fluid eing pushing out under this pressure into the cornea and making it slightly wterlogged. THey gave me pressure-reducing drops which seem to have had some effect and I haven't seen any more rainbows since - but i've also been resting the eye fro mthe lens for a while.
THis may have nothing to do with you - the eye that I saw the rainbows from has had a graft and high pressure post-graft is a known risk - but if anyone does decide to measure the eye pressure, don't knock it! (If you haven't ever had this done, it's quick and easy - they put a drop in your eye like one of the orange fluorescin dye strips with a little mild local anaesthetic in it, then slot a gadget onto the slit lamp, tell you to look at their other ear while the gadget shines a ring of pretty blue light at you, they peer down their eyepiece, twiddle the knob and tell you a number. "normal" is up to 21.)
Please don't despair yet - the message from your consultant sounds very offputting, but I'm sure it's a case of needing to see the sclerals specialists more than anything else.
Rosemary

[Dolphin]

Hi all, I went to see Ken today at moorfields about the problems i have been having with my eye and he was great. Not a negative word out of his mouth. Rosemary you are indeed correct, the lens has been pushing on my cornea, which he thinks has caused the redness and intolerance. Even though i have to wait for the lens i came away feeling much more possitive.

Thanks again for your encouraging words,

Dolphin

[rosemary johnson]

Hi dolphin!
Glad to hear the appointmnet today went well. Hope everything is sorted out and going well again soon.
Do keep us posted, won't you?
Are you coming tothe group meeting at Moorfields on the 20th?
Rosemary

[sheilachadha]

Hi Rosemary

Just joined today What group meeting is this please that you write off? I am also under Ken and he is wonderful!

Sheila

[rosemary johnson]

Hi SHeila,
London meeting of the KC Support Group.
Anne Klepacz has just started another topic about it, so you may have read this by now.
Saturday 20th September
2pm start.
Moorfields Eye Hospital. Lecture room on 2nd floor (find way to ligts then follow signs_
Speaker from MEH contact lens centre about lens options- Anne says more of this.
All welcome.
Probably end up in a suitable local hostelry after the formal meeting.
Hope to see you there.
Been seeing Ken for, ooh, getting on 22 years now - and fallen out of KC group meetings/conferences into the pub with him too!
Agree he certainly knows his stuff - he fitted me with a new lens post-graft by standing beside me, looking across my eye and saying "Hmm, that looks like an N5", got out an N5 from his trial set and I put it in, and he said "That looks... very good." He's also one of the "pros" who has who has learned a lot from this group and hearing from us what it's like to be on ther other side of the slit lamp, as it were.
And he's probably lurking in here reading every word.
Pitythere aren't some more of the surgeons who do that!
Rosemary

[Dolphin]

Hi all,

Sorry I have never heard about these meetings, sound good though. Unfortunately I will not be able to make it due to work commitments. How often do these meetings run because it would be realy great to actually meet someone who has KC?

My eyes are also feeling much better (even though my left one is still uncomfortable) as I have been good and been resting them when I can, which seems to have helped with the rainbows I have been experiencing. Over the past couple of days I have managed to get a good 7-8 hours wear, mostly comfortable, which is much better than 4-5.

You are also right about Ken, we definately need more great specialist like him!

Thanks again for the encouraging words

Dolphin

[rosemary johnson]

Dolphin, and Sheila and anyone else:
London meetings happen every few months. There are also group meetings in other parts of the country.
I you can send a PM (personal message) to Anne Klepacz on this site, with your postal address, she can add you to the newsletter mailing list, and then you'll get the newsletters with details of the gorup meetings, reports of some of the speaker meetings and other items of interest.
Hope to see you at one of the meetings soon.
Rosemary

[mattjbelfield]

Hi,

My first time using this site too. I've had K.C. for about 20 yrs but only fairly mild, in one eye (right). I don't suffer with any of the other symptoms - my optition said I'm a rare case.

I had my eyes tested by an option about 15 years ago and he said I needed specislist treatment through a hospital and would have to go through my GP. I did that and got an appointment with a contact lens specialist (Mr Lydon) at the Luton & Dunstable Hospital, who also has a practice were I live in Harpenden - nice and convenient for appointments. He started me off with a rigid gas permeable lens in my right eye and with some trial and error found a lens that worked very well. Eventually, and after many new lenses - possibly on average about every one to two years (ish), my left eye started to show signs of the same problem - about 10 years ago. After a visit to the optician this was diagnosed as an astigmatism and my optician recommended a pair of glasses, as this would correct the vision in my left eye and 'fine tune' the vision in my right eye, the one with the hard lens. This worked reasonably well, I'd have new lenses for my specs about once every two years and the rigid lens would be changed as and when - between one and two years. Then about three years ago I asked my optition about lenses for both my eyes and get rid of the glasses. He said I could try out some 'Toric' soft lenses, which I wear all the time - even go to sleep with them in - and just take them out about once a week to clean/soak them overnight. This was good news for me as sometimes I work in dusty conditions and the rigid lens was a killer with dust getting in and I had to keep taking my glasses off to wear eye protective glasses . I've been wearing them ever since. They are very comfortable, although a little dry in the morning for a short time. I had a new set a year ago that lasted for six months - they started to tail off after about three months - then I went back for a new set and the prescription changed and I've had about three new sets with different prescriptions in the past six months. Also another unusual problem occured; I seem get one day with good vision and the next day with bad and it keeps alternating from one day to the next . I'm about to make another appointment to see if this can be improved, although my optition wasn't sure what could be causing it. I don't feel like I suffer from dryness of the eyes or anything.

After reading what many seem to suffer I feel that my case is no where near as bad, just frustrating at times, perhaps when reading road signs, reading generally or trying to read my tape measure when I'm working. I also suffer with Tinitus which is probably more annoying .

That's a brief resume of my problem and hope that may be of help to anyone out there.

Matt.