Can you help

General forum for the UK Keratoconus and self-help group members.

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mike scott
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Posts: 188
Joined: Mon 19 Jun 2006 5:17 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and good vision
Location: manchester uk
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Postby mike scott » Sat 02 Jun 2007 11:15 pm

Hi Megan

Welcome to the forum.
Very sorry to hear about your diagnosis.
Yes it is entirely possible for your KC to be mild and for you to have managed so long with just glasses for correction, it is also very possible that you will be able to continue to manage with glasses.
KC in any of its stages usually means that the cornea has experienced thinning to some degree, and laser surgery will thin it even more which can be dangerous to keratatonics so thank god that your KC was spotted and the op cancelled.
What i would suggest to you now is to go to your GP and explain what has happened and ask him /her to refer you immediately to your nearest eye clinic/eye hospital that has experience of KC and when you are in the NHS system make sure you stay in it by attending all your appointments.
When you are seen you will have fairly standard eye exams and they will be able to give you a far more accurate diagnosis and start whatever management you need in terms of glasses/contact lenses.
Despite your diagnosis, though unfortunate it is nt neccessarily devastating and everyone who has it manages it in their own way.

Feel free to ask as many questions on here as you like, this is a great place and you will find many answers and immeasurable support from some of the finest people you will ever know.

very best wishes to you and take care

Mike
onwards and upwards

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GarethB
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Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Sun 03 Jun 2007 8:05 am

Meegan,

We get a lot of cases like yours from the laser clinics.

You get told you have an eye condition you have never heard of and no further information.

It is understandable that having read information here that it freaks you out because most people who visit have had KC for many years and are having problems.

You are at completly the other end of the spectrum. Your KC sounds very boderline if it was not picked up at the first consultation it is probably what we call sub clinical. This is EXCELLENT news because having spoken to others in your position you will probably be fine with glasses with the usual change in prescription and no further worries.

KC is picked up easier than it was 20 years ago because the methods of detecting minor changes in the cornea are so sensitive.

Those who I know that have gone to their GP and explained what happend have seen the specialist to confirm a diagnoses and told they will be fine with their glasses and all has been OK.

The other thing in your favour is your age, the fact you have gone so long only needing glasses, most specialists reckon your vision will only go through minor changes as they have done so far.

As we often say round here;


DON'T PANIC
Gareth

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donna
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Posts: 360
Joined: Sat 16 Dec 2006 5:40 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Cumbria

Postby donna » Sun 03 Jun 2007 8:54 am

I was diagnosed by my optitcian, she simply said you have KC and I can only improve your vision so far with glasses come back in 3 months and I will check it again! So I understand some of what you are now feeling. Its a huge shock. I googled it and found this site, I then read all the threads and scared myself beyond belief!
After a couple of months there was a huge change in my vision so I went back to the opticians and they refered me to my GP who then refered me to hospital, they then put me in touch with a lens fitter.
I got my lenses 2 weeks ago and they are fab! I can get a good 6 hours wear time despite having a heavy cold.
I am not as worried about my future now, I only read the threads relevent to me if I am having a worry day! And I try to keep a realistic head on regarding my KC, I am 33yrs and have been told that the older you start with it the better really, I was told its very unlikly that my KC will reach the point where lens are no good for me.
Any questions you have post them here, I have had nothing but excellent advice!
Try not to worry, you will be ok xx

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GarethB
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Posts: 4920
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Sun 03 Jun 2007 10:23 am

Megan,

By all means go to your optician, but the early stages of KC are hard to diagnose which might be why they missed it.

Due the rarity if Keratoconus, it is quite possible your optom does not have much experience of the condision.

KC Friendly Optoms

The above link will help find an optom near you that knows about KC, it does take time to laod up (well on my PC it does!)
Gareth

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GarethB
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Posts: 4920
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Sun 03 Jun 2007 2:31 pm

Megan,

Will have to get the main web bod to sort it!

Where in Northamptonshire are you?

I am just outside Rugby so only about 40 minutes from Northampton and my local optician Scrivens in Rugby 01788 572719 are really good.
Gareth

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donna
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Posts: 360
Joined: Sat 16 Dec 2006 5:40 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Cumbria

Postby donna » Sun 03 Jun 2007 2:33 pm

I do think that my sucess with the lenses is down to having an optician that knows a lot about KC, my lenses are Rose K, hard in the middle and soft edge I think? They are fab :D Its early days for me but I feel happier than I did 2 months ago!

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donna
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Posts: 360
Joined: Sat 16 Dec 2006 5:40 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Cumbria

Postby donna » Sun 03 Jun 2007 4:28 pm

My lenses were ordered through the hospital so the cost is £50.50p per lens, he said this covers any prescription changes for 12months. He has not given me the bill yet, said that he needs to make sure they work for me and that everything is ok, I am there on Thursday so he can check the fit is ok and that I am getting good vision, he had hoped I would be up to 8 hours wear time by then but I am still managing 6 ish hours, but I have had a heavy cold and now have sinusitis which wont help! I have been off work since the 3rd May, my employers have been fantastic and lucky for me I am on full pay. Otherwise I dont know how I would have managed!

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GarethB
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Posts: 4920
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Sun 03 Jun 2007 6:23 pm

My lenses were through my hospital. It was the Scriven Opticians that noticed KC had come back! I have had KC for 20 years and my transplants are nor far off 20 years either.

Scrivens referred me to Coventry and I got my lenses through them £50.50 per eye, but then you have all the lens solutions on top.

If you have done well with glasses and still are, any referal to the hospital will probably send you back to your local optican for glasses.

Rigid Gas Permeable (RGP) lenses are not the most comfortable.

I am legally blind in my right eye and partially sighted in the left without sight correction. In 2004 I was told glasses would do nothing for me!

Now in 2007 the KC has not changed in nearly three years and I am wearing glasses. Full vision in the left and as I am about used to the extra high power in the right, that can be boosted in a couple of months and I will have full vision in both eyes with glasses. Peripheral vison is a bit distorted, but that is overcome by turning my head more :D

I would suggest getting a second opinion before worrying about anything else.

Oh and be prepared for your GP to look vacant when you mention KC, not many have heard of the condition. The smarter ones who know their latin will wook out that the literal translation is conical corneas.
Gareth

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donna
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Posts: 360
Joined: Sat 16 Dec 2006 5:40 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Cumbria

Postby donna » Sun 03 Jun 2007 8:27 pm

I printed off the fact sheet explaining what KC is, I didnt need it as my GP says there is 4 other patients at the surgery with it, and my boss just took my explanation as enough info

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GarethB
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Posts: 4920
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Tue 05 Jun 2007 5:37 pm

Good luck.

It is quite possible you do not have it or if you do that you are what we call a borderline/sub clinical case.

If you do have KC, regardless of how far it's progressed you are still welcome.
Gareth


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