Quicktopic posts: Mar 2003

[Sue Ingram]

Hi Shirley (1485), Sounds like our experiences have been very similar indeed! I have also tried a mini scleral in one eye but although I did not even know it was in my eye whilst wearing it, unfortunately it took a crowbar to get it out of my eye at the end of the day due to the suction and then I got a pain in my eye (similar to you with the corneals). Its very strange that sometimes whilst you are wearing lenses they do not hurt at all, but then hurt when you take them out - very odd, but then that's KC for you!

Can't help with the air bubbles, I'm afraid. I tend to get them whilst I am putting in the sclerals and sometimes have to put them in and out 2 or 3 times but usually after that they are OK. Only on rare occasions do I get air bubbles that appear later in the day. Maybe someone else has some suggestions for you.

Dear Andrew, your message has just come in whilst I was writing this one. I wear my normal size sclerals for 14-18 hours a day with no problems. A mini scleral is about two thirds the size of a normal scleral and people are finding them good, although they can be a little more tricky to insert into you eye due to the fact they are smaller. Take care both, SUE

[Gillian]

Dear Andrew

I wear my sclerals once or twice a week (usually once) to give my eyes a fab rest from corneals. I can easily wear them 12 - 18 hours - no probs. Comfort is great. Unfortunately I don't think the vision is quite as good as with the corneals. It is so nice to have one day without dust or any disturbance in the eye. I am hoping that I may get some glasses to go over them one day soon.

[Peter]

I am 27 and was diagnosed with KC 6 months ago. It is only in my left eye and has remained stable over the last 6 months. I am wearing rgp contact lens in my left eye. I have near perfect sight in my right eye. I have suffered from dizziness and a feeling of being off balance in the last month or so. It just lasts for a couple of seconds and then passes but is quite strong. It is worse when I am walking around but has been happening quite regular. Is this normal with KC ? My optician did not seem to think it was linked to KC. I was wondering if any other KC patients had experienced similar symptoms. I would like to hear from anyone that has. I have read reports elsewhere on the net of KC patients suffering from dizziness , headaches , anxiety and fatigue. Has any research been done about symptoms connected to KC ?

[Louise Pembroke]

Hi folks, feeling a bit down at the moment. Went to the clinic for a new lens to attempt to get some vision in my bad eye [nothing on the alphabet board]. It is a very large soft lens with markers at the base which denote the position it should be in. It is also a very thick material. It gave me 3 letters on the board and can only worn for 5-6 hours. I went for an instruction session [I have a RGP in other eye]as the technique is different. I couldn't get it in, removal is fine but insertion was impossible. I have a very strong reflex in my upper eyelid, always have, staff can struggle to get lens in me! I'm experiencing the same problems as I had when I tried the sceleral, it's the size. I can't handle the large size. I have to succeed quickly with a lens otherwise it doesn't happen and I had many problems as a youngster, it reached the point where I became phobic about putting lenses in! I sat back frustrated & crying. The technician exclaimed "Oh no are you crying, is it your boyfriend, or the lens?" I didn't feel she could grasp what it meant to me so I quietly said, "this is my last chance of getting some vision in this eye". I then got the mind-over-matter stuff. I'm looking at the lens now and thinking I can't do this, I just can't do it, I feel such a failure.

[Gillian]

Louise - please don't be too despondent. When I first tried a scleral I was surprised how difficult I found it to insert. I have been wearing corneals for 30 years and really thought I could handle my eyes. I found it very frustrating and to be honest still often have to make a few attempts to get them in without the horrible bubbles. I find that if I am alone and allow myself plenty of time I am ok. It is the pressure of 'having to get them in' that makes it worse. The more you get it right the more experienced you will be and each time will become easier. Good luck and don't give up. Each lens and each individual have different ways to get 'together'. It is only by trial and error that success occurs - but it does.

[Tony Stigle]

Hi..
Sorry I have not been able to update the web for a few weeks
Months!.. Im back now..
Lots of info on there about the Second National Conference & the AGM. Well done all who keep this Discussion Page so interesting & helpful.
Tony

[Louise Pembroke]

Thanks Gillian, I'm going to the conference hope to see you there

[Helen Royston]

Hello,
I found out I had KC about 6 six years ago, but have only just discovered this web site, its brilliant to know people know what i'm talking about, my worst eye is the left eye. I went for a sight test last Friday and I need some more lenses, but I managed to get to the bottom of the alphabet board, (i have never been able do that) so i'm quite happy.

[Janet Manning]

Hi Louise,
Don't despair. As Gillian says it really does get easier. When I first got my sclerals I always allowed plenty of time to get them in. Pretend you have no deadlines and try and relax. If you don't manage it after a few minutes, give yourself a break and try again in an hour or so. I realise this may be very difficult if you are trying to get to work, but I found it worked for me.

Even now after 18 months, the only time I tend to get bubbles is when I'm rushing to catch a train etc and haven't the time to be having a second go at getting a lens in! So the key to success is relaxation. Try a few deep breaths and consciously relax your whole body before you start. Approach the lens with the attitude that this is a new day and it IS going to work. I avoided having anyone else around at first, so there were no distractions. As Gillian says you will reach a point where you develop a knack for yourself and suddenly you can insert the lens without thinking.

Keep trying and let us know how you get on.
Janet

[Sue Ingram]

Dear Helen (1499), Glad you have found the site - it does make a difference doesn't it? I wish there had been one when I was diagnosed 27 years ago - it was nearly 15 years before I even met anyone else with KC and that was only due to this Group starting up at Moorfields! It was just great to talk to someone else who understood. Take care and good luck with your new lenses. SUE