Quicktopic posts: May 2003

[Andy C]

Thanks for all the advice - backs up my view that I need some more information and quickly.

I live in Staffordshire and work in Manchester, so would more than welcome the name of any good specialists in the area.

Today I tried to contact the consultant who has 'booked' the operation, however he wasnt available - so a letter will be in the post after the weekend.

Maybe Im lucky my left eye is almost perfect vision whilst my right is completely blurred - never worn contact lenses or glasses - just seems to have deteriorated really quickly.

Thanks again, my email address is andrewcope@ntlworld.com

[aimee.wilkes@bt.com]

Help !! My lenses are driving me absolutley potty, they itch and irritate, I have been wearing them now for almost 2 weeks, the longest i can manage is 6 hours - do I just need to persevere with them ?? My optician says that it takes a while to get used the RGP lenses which i have heard a few times but i wanted to ask people that have been wearing them for a while with KC ? Can anyone put my mind at rest ?

Aimee

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[Nikki]

Hi Andy C

[Nikki]

Hi andy I am registered as partially sighted, but it wasn't easy to get the registration. I am currently at university studying Occupational Therapy and was in my 2nd year when i became intolerant to my piggy back lenses. I needed the registartion to get support and help with magnifiers etc. The consultant was reluctant to sign the form as he said that theoretically my eyesight was correctable to 6/12 with contact lenses. I argued that 'theoretical eyesight' didn't help me much when i was trying to get around and study! Eventually they agreed. I was sent DLA forms but the technician I saw from the sensory disabilities team suggested that my application would fail as the things I have most difficulty with, like shopping, cleaning reading etc aren;t considered 'necessary' activities -so I didn't bother. Does anyone know any more about this. I too have been unable to get anyone to take my requests to try scleral lenses seriously and my GP refuses to refer me out of area! So I am on a (very long) waiting list for corneal transplant although I have no corneal scarring

[Susan Mason]

Dear All

I haven't posted any messages of late as I didn't want to appear neurotic or depressive (or both)and also I have not been able to see much at all. Anyway I now have my scleral lenses (after a 15 week wait) and today is my first day of wearing. I have been advised to wear them for 3 hours the first day then 4 and 5 etc etc. So far it has not been too bad. Yesterday at the hospital getting them in was not too bad but getting them out was a nightmare. Today putting them in took half a box of tissues, 3 packets of steripod and around an hour in which time I think my husband has decided he is divorcing me. I seemed to keep getting air bubbles then cloudy spots which appeared to be sticky spots on the lenses. Anyway I am just coming to the end of my 3 hours which brings me to my next point, clean with Bausch & Lomb and then rinse well under the cold tap?? (seems very different to my past experiences of lens hygene) then dry off with a tissue and store dry??

Does anyone store them wet? and if so how and what sort of case?

The things I would say I have noticed in the last 3 hours are;- 1. That I can actually see out of both eyes (and my house is extremely dusty,how could people not tell me that you couldn't see the telly?) 2. My eyes feel dry I am not sure if this will pass or if there is something I could use that would help.

I don't go back to the hospital until early June so any advice would be gladly received.

Lastly how do you all get solutions etc? At the hospital they suggested that I may want to get the steripod on prescription. My local chemist hasn't heard of it, another well know chemist have told me they can get it but looking at the price they quote (44p per sachet) I am going to need a new mortgage. I have rung my doctors and the receptionist has told me I must see the doctor so I have an appointment for Tuesday, am I going to have to beg for this on prescription? Surely it is not classed as a cosmetic luxury? I need the lenses to see and I need the steripod for the lenses.... any ideas???
You can email me direct if you like on themasonfamily3@btopenworld.com

[Jan Fisher]

Hi, The last time I used your message board was for information on having my eyes plugged. You were all very helpfull with that but unfortunately it did not work. They could only insert one plug (after poking a metal rod into my tear duct to enlarge it) and that fell out after a fe days. Not the worlds nicest experience. Well I am off work yet again, this time with threats to send me so see the occupational therapist. My specialist has come up with the idea of using cyclosporin drops in each eye to help ease the dry eye problems that are sending me scatty. Have any of you been prescribed this stuff and if so could you possibly give me some feedback on it. The only thing I have been told is that it lowers my imune system and that one of the side effects are ulcerations of the eye which could lead to loss of sight. Ok my eyesight is naff at the moment but at least I can squint at everything and get somethings slightly in focus. I wear my lenses piggyback (RGP on soft) but at the moment I am wearing them less and less. I manage to work 3 days a week and then leave my lenses out for the other 4 days. Does anyone out there get as frustrated as I do at the hopsitals. The specialist seems so busy that he all but tells you to get on with it and you get the feeling that he is not really listening to you. I use the A&E department like the doctors surgery and the nurses are fine but after that I feel as if I am knocking my head against a brick wall. This time I have been told that yes my eyes are scarred again and to leave my lenses out, but hen I asked when they can go back in I am simply told that "you know the risks with lenses". As a KC sufferer what am I meant to do. They will not give me a graft due to my other problems as they say my eyes will probably not heal properly.

Sorry about that rant and rave but I feel a bit better now. Do any of you have a similar probem and if so how do you get over it?

[Janet Manning]

Hi Susan,
Re steripod - please see my recent postings (earlier this week) on this issue. Only saline now available on NHS (apart from at moorfields) is Normasol in silly floppy tubes. ypour hospital must be using up their supplies of Steripod, as I was told at 2 chemists this week that it is no longer being manufactured.

Getting your lenses in and out will speed up. In a short while you will wonder why it ever took you so long. The main thing is you can actually SEE with sclerals.

Hi Jan,
I was prescribed Cyclosporin, but never used it. I checked out the side effects, which really scared me and the product I was given is only licensed for animal use so far. If you would like to discuss this further and alternatives, please email me on:-
janetmanning@lineone.net
Janet

[Payne Family]

My daughter went through a stage where she couldn't see with her glasses (diagnosed 8 years ago) and she tried lots and lots of different lenses - both soft and hard ones).

At the end of the day she couldn't see out of soft ones and couldn't tolerate any hard lenses and we were at a loss as to what to do next - we had another eye test (only by chance) and we discovered that her eyes had been going through changes and we found her lenses for her glasses that she could see through with almost perfect vision. (for the first time since she was diagnosed !

Katherine started with KC at age 4 in her right eye and was diagnosed with KC in her left eye last year at age 11.

Our optician is very anti hard lenses because of her age (and I agree with him) as there is some evidence that hard lenses at a young age can make KC worse.
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[Susan Mason]

Thanks Janet for your advice on saline.
Do you store your lenses dry??
What procedure do you follow for cleaning your lenses??
Any advice for "dry-feeling" eyes??

[Janet Manning]

Hi Susan,
Yes I store my sclerals dry. On removing them I clean them with Miraflow - available form Tesco etc - and rinse under cold mains water. Dry with a soft tissue and store dry. in the morning I clean them again with Miraflow, but this time rinse with saline, before filling them with saline for insertion. Key to avoiding air bubbles is to fill the lens to overflowing and keep it horizontal so that you don't lose any saline. This means bending your face down to look at the floor, so to speak. Take your time and don't try and hurry. Everytime I've got a train to catch I get air bubbles!!

I use either saline or Refresh eye drops for dry eyes. It won't be possible to use the saline any more now it comes in non rigid containers - can't imagine how I'd aim !! Most important is to make sure you use drops without preservative while you have the lenses in. If your eyes are dry, it can be difficult to remove the lenses and sore. I put a little saline in each eye first and blink a bit and then they come out easily, without feeling like I'm bringing my eye ball and transplants with them.