newbie here

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bluenose
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Posts: 2
Joined: Mon 30 Jun 2008 8:40 am
Keratoconus: Yes, I have KC
Vision: Spectacles

newbie here

Postby bluenose » Mon 30 Jun 2008 12:41 pm

hello all,i was diognosed with KC about 18 mths ago.im using glaases atm to correct my vision and im looking for some answers to these questions.
1.my glasses are 2.5 for the right eye and 1.5 for the left.so how serious is my KC???
2.my specialist recommends that i have cxl.but how much does t cost???
3.ive been referred to dr shah in birmingham and am trying to get on his research trial.has anyone been on one of these?ifso what does it involve?how long are they for?ow many times will i have to revisit him?
hope you can answer these for me.cheers david :)

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nicola jayne
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Re: newbie here

Postby nicola jayne » Mon 30 Jun 2008 1:35 pm

Hiya Bluenose,
welcome to the forum !!.
I cant help with any of your questions but I am sure that other members will be willing and able :O).
again weclome
nicola

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Andrew MacLean
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Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: newbie here

Postby Andrew MacLean » Mon 30 Jun 2008 4:01 pm

bluenose wrote:hello all,i was diognosed with KC about 18 mths ago.im using glaases atm to correct my vision and im looking for some answers to these questions.
1.my glasses are 2.5 for the right eye and 1.5 for the left.so how serious is my KC???
2.my specialist recommends that i have cxl.but how much does t cost???
3.ive been referred to dr shah in birmingham and am trying to get on his research trial.has anyone been on one of these?ifso what does it involve?how long are they for?ow many times will i have to revisit him?
hope you can answer these for me.cheers david :)


1 Can't really tell you how serious your Keratoconus is; you'd need to ask your ophthalmologist (eye doctor), although it may be that your KC will not progress beyond the point where you can correct your vision with glasses or contact lenses.

2 In some places you can have CXL on the NHS. Did your ophthalmologist make this suggestion at an NHS clinic, because if so it may very well be that yours is one of the places that offers this treatment.

3 Sounds like he is doing one of the trials of CXL within the NHS. Beyond that, I am afraid it is a matter of 'suck it and see'!

All the best. Stay in touch and welcome to the forum.

Andrew
Andrew MacLean

bluenose
Newbie
Newbie
Posts: 2
Joined: Mon 30 Jun 2008 8:40 am
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: newbie here

Postby bluenose » Mon 30 Jun 2008 5:47 pm

thanks for your replies.
unfortunatly i cant get cxl on the nhs,thats why im looking at the trials or going private.the problem with the trials is that they will only do one eye :( :( .

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Andrew MacLean
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Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: newbie here

Postby Andrew MacLean » Mon 30 Jun 2008 5:57 pm

If they will do the eye in which KC is most advanced, you may be able to have the other one done, once CXL has been approved for general use in the NHS.

All the best

Andrew
Andrew MacLean

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rosemary johnson
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Posts: 1478
Joined: Tue 19 Oct 2004 8:42 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: East London, UK

Re: newbie here

Postby rosemary johnson » Mon 30 Jun 2008 6:46 pm

Hi, and welcome to the forum.
In response to your questions:
1. I presume these are "negative", ie. short-sighted, powers. 1.5 and 2.5 aren't very powerful in themselves as values for "ordinary" shortsightedness.
The key to how bad the KC is, though, is not simply a measure of how short=sighted you are, but how irregular your eyeballs are. You could actually have a shortsightedness value of -14 and no problems with KC as long as the eyeballis a regular or "smooth" shape, and a lot of trouble iwth KC of a zero power correction if the front of your eye is irregular or "lumpy".
I'd think the key to how good/bad the KC is would be not the power but the fact that you are doing OK in glasses, and haven't had to resort to one of the many typs of contact lens yet.
2. If you can get onto one of the trials being run, it won't. Of course, that doesn't mean you won't have outlays - time off work, travel, etc etc.
3. You'd need to ask the consultant or his staff how many appointments and at what intervals they are likely to ask you to come to, as each team tends to have their own routine. Of course, the better the procedure goes and the better you heal, that may mean fewer appointments, or further apart.
Incidentally, no-one is going to do both eyes at once! - because if they do, you'll be totally lind while they heal. You have one done at a time, and you can then use the other one to get about with while the one that's been "done" heals and recovers. THen you may get the other one done later.
Hope this helps.
Rosemary


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