Thorny questions about expert advice...

[GarethB]

Such posts by Brigid and Lia must be of value to the optoms to help with the patients experiences.

I bet some optoms can sense the patient is not happy, but unless they say it is hard for them to develop their skills further.

It helps us too that when an optom says a lens can no longer be fitted that it may mean that aprticular optom can not help further. Their skills may be fine for their area but lacking where we want them.

This all comes down to understanding and todays preasurised world communication is faster but our ability to communicate what we really feel that may ultimatly help us and others is lacking behind the technology.

[Lia Williams]

Thank you for all your positive comments about my KC. Here's a little more:

Experts. I've seen many different optoms at Moorfields. I usually go every six months and I can think of seven or eight individuals who have seen me in the last few years. And I still don't get perfect sight out of my right eye!

No, I'm not complaining they do do a brilliant job. My right eye does see pretty well if I look straight ahead, but panning my eye from right to left does cause some ghosting/blurring. Usually I'm unaware of it and the lenses do work as a pair because together both eyes can see better than the left by itself.

It's all a question of compromise. The lens has to fit comfortably to maximise wear time and to not damage the eye. Ironically the right eyes sees better with the left lens - this is because it is squashing the cornea in some way.

Getting a compromising fit has taken some time; and my eyes aren't even changing! It can be extremely disheartening to get a new lens and find it doesn't give perfect vision, or it pings out when glancing to the side, or can be blinked onto the white of the eye with an incredible suction that takes ages to release not to mention the lenses that after a month become uncomfortable and wearing times dropped to twenty minutes. When a lens doesn't live up to one's (sometimes unrealistic) expectations it can be so frustrating. I do give a new lens a fair trial because some problems do diminish when one gets used to the lens.

When I have an appointment I always wear the offending lens for the previous week so that the optom can see the problem; and I can accurately describe it to her. At an appointment I do try to be objective and work with her to improve my sight. There are times when I'm thinking "This is another useless lens I've had to buy" - but I'm sure she's probably thinking "With your eyes madam, it's a miracle we can find a lens to let you see the board, never mind read it!"

Lynn, a better pair of back-up glasses is on the to do list; especially as I'm due for an eye test as Moorfields only check 'the front of the eye'.

Lia

[Sweet]

Yes getting a good lens does take a lot of time and effort. It is good though that you are able to see with glasses, i have never been able to see a dam thing with them which gets very annoying when you are struggling to wear a lens.

I never did find a lens to wear in my left eye because of it's steepness so have now had a graft, hopefully this will mean that after 15 years i will be able to see with it!

Sweet X x X

[andytaylor]

I'm going to admit not reading the full discussion here, but I have read the first 2 or 3 pages.

Hello, by the way, I am new here. I was diagnosed with KC in 1997 and consider myself lucky to be treated with RGPs (Rose K) and that my KC has been stable for the last 5 years or so.

I would agree with the OP on the panic factor. I remember the first couple of visits to the hospital - first the consultant who diagnosed the condition. He didn't give me much information. Then, after I was fitted for lenses and beginning to build up the wear time, I managed to mix up left and right. My left eye lens scratched the right eye quite badly. The same consultant commented that this sort of damage was just bringing the date of a graft forward a bit! At that time I had no idea that I might not need a graft in the near future.

It was not until I started reading the information that I found on the 'net that I fully understood that grafts are not inevitable and that the majority of sufferers are like me.

So on balance I would rather have the information from a site such as this and the knowledge that there are other people out there willing to share their experiences.

Andy

[Sweet]

Andy, hello there and welcome to the forum! Sadly sometimes we panic over information because of the way it is told to us. I really hope that you will find this site useful with loads of answers to your questions!

Sweet X x X

[GarethB]

Lia,

I still on occasions get the lens moving out of position. Since being a regular with the comfort eye drops and upping my water intake, when the lens does move it no longer sticks in the limpet like manner you describe.


Andy,

I think it is only human nature that once diagnosed we go into 'Oh my God what's gopin to happen now!' mode while at the same time we are given the facts, then the brain latches onto all the negatives.

The group has loads of useful information and I think where Lynne is coming from is having something all hospitals and optoms can give out to the patient as soon as they are diagnosed. This allows you to get over the intial shock and then calmly and rationally read the literature (if you can that is, not all of us can) or get someone to read it with us.

[jayuk]

Andy

Welcome to the forum

Good to see that you also get value from the experiences that are given on this board! The point you mention about not being told anything when diagnosed is very true...but just doesnt exist for KC...but across the board in many conditions......I have always reffered to it as Arrogance lol.......kind of like "If I say you have got this ; than you have and stop asking me silly questions!"...its only when you start questioning and pulling these people down a peg or two that they than give the respect that was due initially!.....

J