Advice needed

[GarethB]

Hi Aimlett

I dont think optoms can necessarily say what will or will not be comfotable unless you are allowed to try them.

There are many here who found RGP's excrutiating just like you but when tried piggybacking or the softperms got excellent comfortable vision.

I fail to understand how things can just be brushed aside without attempting them first.

The Kerasoft do have problems of not always centering properly which was the case with mine, but they could compensate for that. What sort of compensation for the Kerasoft not being correct was done?

I know the location of the cone caused by KC can influence lens fitting, has intacs been mentioned? This might flatten the cone enough that a lens can be fitted that is more comfortable? See intacs on the FAQ section.

Intacs are not as a drastic as having a graft which would come later if you ever needed one.

[Andrew MacLean]

aimlette

I am sorry if I seemed dismissive of your plight: nothing was further from my intention.

But Gareth is right about what he says. I hope that they can get something sorted out for you, but in the meantime



I am sorry about this, it is an age thing: I just can't help liking these large friendly letters and their calming message!

Andrew

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[aimlette]

I didn't think you dismissive at all Andrew, all this discussion leads me to the conclusion I might be better going to another hospital/optom. I don't know whether options are being brushed aside for valid reasons that are not explained well, or because I live in the NHS region with the highest debt in the country and most treatments which are not about life saving are being cut.

I'm just very happy to have people to talk to who understand.

[GarethB]

I would argue that givion someone the ability to see is life saving.

If you can not see too well, it is all too easy to have an accident. I know someone here who was unable to wear lenses for a while and in trying to cross the road got knocked over by a car. Fortunatly it was a low speed and only pride and body was bruised and soon healed.

With the speed many people drive, it could have been so much worse!

[Andrew MacLean]

I don't know whether options are being brushed aside for valid reasons that are not explained well, or because I live in the NHS region with the highest debt in the country and most treatments which are not about life saving are being cut.

I'm just very happy to have people to talk to who understand.

As to your last point, that is exactly how I feel about this forum!

As to your first point, I hope that the forum gives you the confidence to challenge what is said to you. Never forget that you are the customer, the care and treatment of your condition is under your control!

I agree entirely with Gareth. Eyesight is not a luxury addition to an otherwise full life: it is an essential component of our identity. If it fails and nothing can be done, then that is one thing. If someone decides not to do something that can be done for non clinical reasons, then that is another thing altogether.

Andrew

[John Smith]

Hi Aimlette,

I've just read your post and I'm amazed at what a hospital optom who should know better has told you.

It's likely that they have little experience of scleral lenses or softperms. Sure, not every lens type works for everyone... but unless you try it, how would you know?

My experience is with sclerals. If you have difficulty in tolerating the eyelid rubbing on an RGP then a scleral lens sounds like an excellent alternative.

And as for saying about skirted lenses that "they're not very good", I'm sure we have members who will disagree strongly. I know we have people whose life was completely changed by piggybacking!

Asking for a different optom sounds like a good idea to me.

Hope everything works out for you soon. Let us know how you get on.

[aimlette]

Thank you every one. Reading all this has made me feel much better. I am resolved to try and get referred elsewhere. Will keep you posted

[Andrew MacLean]

aimlette

All the best with this.

Andrew

[GarethB]

Aimlette,

This might help you with seeing a different optom in your area;

The Register of UK Keratoconus Friendly Optometrists

Regards

Gareth

[aimlette]

Thanks for suggesting the list Gareth. I decided to strike while the iron was hot, so to speak, and rang one of the optoms on the list. Very helpful, and optomistic, and willing in principle to try CLs the hospital won't - so I've booked a double appointment for next Thursday...fingers crossed. Now I just need to get the hospital to provide more details on what I've already tried.