UK Keratoconus Self-Help and Support Association

I hate hate hate my contact lenses, they're hot heavy uncomfortable and I don't see well with them after 40 mins and they take me hours to get in (stamps feet because I can!!!)

Ok nough temper tantrums on the forum * apologises to all offended.

I have optic nerve hypoplasia on its own that makes my vision perfect in my right eye and I can count fingers in my left. Then Mr KC came along and gave me 6/30 with my glasses and heavily reduced field in my right so I now spend all day running around as if i was only looking through a cotton real.

I have tried everything on the market, normal RGP's Rose K's etc don't work because the moment the lens reseats itself the temporary blur is enough to set my nystagmus off (eyes flick back and forth with no control, and the lenses don't reseat and the whole thing degerates into a blur). I can sort it with my scleral lens for a while (get near normal vision in my right no nystagmus etc) until either I get too uncomfortable or give up in frustration having tried to put them in without a blubble. I can never exceed 40 mins wearing time.

Life's changed a lot in the past two years I am now retraining as a physiotherapist just so I can feel useful again. I guess as my scleral kind of works and I think the only other option is surgery Im a bit stuck.

I can continue to live my life as a partially sighted chappy with white cane and really cool shades. Im quite happy that way I just focus on what I can do and not what I can't. I still get some sight but not much from my lens.

Or I look at the surgical options which for me have no guarenteed outcomes because although mechanically the sugery might be sucessfull, the way my brain may reacts to the new refractive properties may well leave me worse off. (have more or less decided that I should hold off on this until I experience scarring if it ever gets that bad).

What do you think?

I like the cool shades...........

Your post def put a few things in to perspective and made me think!

I personally would not know where to start and what to say here...as the surgery route has no concrete results.....or at least potential...from what you have said...

Why can you not have the Scleral in for more time? What how long do they stay in or can you tolerate them?.......this is a first where I have heard someone cannot tolerate sclerals........

I understand your frustration Drew... its bad enough with the ONH without KC messing you about. The irritating thing about KC is that sometimes you get NEARLY there with contacs and then the wearing time problem hits... so you are betwixt and between.

Sclerals CAN cause problems with oxygen transmission for some people - basically because they do cover the entire eye. Even with advanced gas permeable lenses this can be the case if your eye is sensitive to oxygen deprivation.

Rose K are small lenses so can have the problem of moving off centre which is entirely not good for your nystagmus!

However, there are options out there... there are quite a few more RGP lenses available such as the ALK lens.. this is larger than the RoseK and is fitted so it vaults the cone. Changes can be made to the material to get the best oxygen transmisson. Dedicated Soft lenses are also an option and in either case, Spherical Aberration Management (SAM) can be applied to enhance the optics to give a sharper retinal image - and I have found that when this is applied to to lenses worn by people with nystagmus, this can help dampen it.

Use of corneal topography to design lenses specifically for your eye is now within reach and should start to be available soon...

The main problem really is gaining access to all of this. Sometimes it is trying to convince consultants there are other options out there.

I would suggest you hold off surgery for now as the outcome is never guaranteed. I think exploring the contact lens options may well bear fruit.

Lynn

Drew,

I am afraid I can not offer anything to help, but I would like to thankyou for putting this in;

I can continue to live my life as a partially sighted chappy with white cane and really cool shades. Im quite happy that way I just focus on what I can do and not what I can't. I still get some sight but not much from my lens.

Such a positive outlook is what I try and go by and should serve as inspiration for us all. I try and put this across to the KC people who contact me worried about how KC will affect their lives.

Regards

Gareth

I agree with Gareths post...

And I just wanted to add that i get asked quite a lot by newcomers to KC...how KC effects someones normal life...and I say...well what is a normal life?...can you show me one?... and then i can tell you!

Its about what you feel is right for you!