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Original poster

Keratoconus in eyes. Scared. Is this what I have?

32 replies

funinthesun19 · 06/04/2020 01:23

I had an eye test done a few weeks ago, and it turned out I need glasses for reading/concentrating. Ok no problem, I’ve never needed glasses before now but lots of people need glasses so I wasn’t overly concerned.

He did mention to me that my eyes are cone shaped, which will explain why I’ve been getting headaches and why the glasses will help me. I didn’t think anything of this until tonight, when I thought I’d google it. I really wish I hadn’t. The condition “Keratoconus” kept popping up, and i wasn’t expecting that at all! Is this what he means? Surely if it’s something that bad he would have gone in to more detail about the prognosis!

Has anyone else had this?

Something else for me to worry about now Sad

OP posts:
Original poster
funinthesun19 · 06/04/2020 01:24

By the way I’ve never had any other previous eye problems and I’m now 30.

OP posts:
WutheringFrights · 06/04/2020 01:26

www.nhs.uk/conditions/astigmatism/ its more likely this x

WutheringFrights · 06/04/2020 01:26

But I’m not an optician!

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General health
Redglitter · 06/04/2020 01:30

Firstly dont panic. I've had kerataconus for 20 odd years. It cant be too bad if hes not diagnosed it. There are various options open if you do have it and your vision continues to deteriorate. It could be as simple as a contact lens. I've been diagnosed as having it in my other eye recently and have been fitted with a hard lens through the local hospital.

My first diagnosis was over 20 years ago and it resulted in me requiring a corneal transplant which was very effective.

Bottom line is dont worry but maybe ask for a referral to the hospital.

PM me if you want to at all

GloGirl · 06/04/2020 01:31

I would also have assumed astigmatism

BeerMyHold · 06/04/2020 01:32

Do you have a copy of your prescription? If you have the numbers on there I'll be able to tell you more.

Not an optician but work in that field.

Original poster
funinthesun19 · 06/04/2020 01:33

Ohh. That makes sense. When he said cone he may have meant rugby ball shape. I’m sure if it was something as serious as what I’ve googled he would have gone in to it in a lot more detail.

I can’t even go to the opticians for a second opinion at the moment with everything that’s going on.

OP posts:
Redglitter · 06/04/2020 01:35

Cone & rugby ball are basically the same I've had mine described as both

Original poster
funinthesun19 · 06/04/2020 01:38

Redglitter Thank you for sharing your experience. I’m sorry you’ve had to go through all that. The thought of eye surgery terrifies me.

BeerMyHold I don’t unfortunately, but I might ring them tomorrow to get a better explanation if they’re able to speak to me.

OP posts:
walksen · 06/04/2020 01:52

Ive had kerataconus for years. My right eye is pretty useless but the other has deteroriated much more slowly.

As a pp said there are treatment options such as a hard lens to squash the lens back into shape and cornea transplants etc. Eventually i decided theres not much you can do about it before that except go for regular tests so you can track changes over time and as long as your vision does not make day to day life difficult e.g driving try not to think about it too much!

Haggisfish · 06/04/2020 01:56

I think if it was Keratoconus it would have been made very obvious to you and you would have been asked to book in for follow ups and possibly referred to hospital. Much more likely to be astigmatism which is rugby ball shaped eyes and easily dealt with through glasses!

Original poster
funinthesun19 · 06/04/2020 02:16

walksen Are you getting treatment for your eyes e.g contact lenses/surgery?

I wish I’d have asked him to explain it better to me when I was there. It wasn’t Specsavers or anything either who are reputable. It was an opticians in my local Morrison’s and I dropped in before doing my shopping because they were offering free eye tests. Maybe I should book in at Specsavers but I doubt they’ll be able to see me at the moment. Are they open at the moment with everything that’s going on?

OP posts:
walksen · 06/04/2020 02:20

trouble is kerataconus in early stages presents as an astigmatism but as it progresses the cone shape becomes more obvious. Whether you get a hospital appointment depends on how bad it is. I cant even read the top letter with my bad eye.

Original poster
funinthesun19 · 06/04/2020 02:25

That’s really scary walksen Sad I really feel for you it must be horrible. I don’t want to go through any of that.

OP posts:
Redglitter · 06/04/2020 02:31

I cant even read the top letter with my bad eye

Same here. Its scary when you see how bad it is. Cant believe the difference my lens makes though

Mumshappy · 06/04/2020 02:37

Ive got it in both eyes OP. Corneal transplant in left eye so far. Im sure you would have been referred to the hospital if he thought you had this condition as there are tests that have to be carried out.

TolstoyAteMyHamster · 06/04/2020 06:31

My nephew has this condition. He was diagnosed at 11 which is young and it progressed relatively quickly but has been stabilised with a newish treatment called cross-linking. My understanding was that it typically doesn’t worsen much once you reach your late 20s so if you do have it (not saying you do) then it is unlikely to deteriorate much at this point as your corneas harden as you age. So the later the diagnosis the better the outcome, in that sense.

Oldestchild90s · 06/04/2020 06:41

Cone and rugby ball shaped are not the same. Rugby ball is astigmatism and cone shaped is certainly keratoconus. My other half was diagnosed with this maybe 5 or so years ago and had corneal cross linking done in his eyes, to be fair i sat with him and watched the whole procedure (why would anyone do such a thing) and i wouldn't wish it on anyone. However, since the operation it hasn't got any worse and he only has annual check ups now! He wears hard contact lenses which help him too.

Only thing is i'd wait until someone actually tells you it is keratoconus rather than googling things as the explanation may well have meant astigmatism. Good luck!

Original poster
funinthesun19 · 06/04/2020 10:56

Oh god. Well I rang Specsavers just for a chat, and the lady I spoke to said come in for an eye test when things start going back to normal which I will certainly do.
She did point out that if it was Keratoconus, the optician who carried out the eye test had a duty of care to refer me for further tests/care so she said it’s a chance it’s just an Astigmatism. But she said to be certain, come in for an eye test in a few weeks.

OP posts:
KeratoconusToo · 06/04/2020 14:36

Just seen your update but thought I would post anyway incase it is. I have Keratoconus in both eyes, diagnosed about 8-10 years ago. Day to day it's nothing to worry about.

My eyes are obviously uniquely shaped, I have tried special contact lenses but found them uncomfortable though that was a couple of years ago so was due to get refitted before lockdown occurred. I find my prescription changes a lot so I need new glasses every 6-12 months. My eyes are also drier than they used to be, made worse by screen time etc.

I have checkups every year or so at the eye hospital to check for deterioration.

So please don't worry if it is.

Redglitter · 06/04/2020 14:48

Cone and rugby ball shaped are not the same. Rugby ball is astigmatism and cone shaped is certainly keratoconus

The consultant I see has used both to describe my condition. In fact initially way back when I was first diagnosed it was described as rugby ball shaped

Oldestchild90s · 06/04/2020 14:51

@Redglitter Very intriguing. Don't get me wrong i'm no specialist but i just assumed they were different things. Apologies for the confusion!

IamChipmunk · 06/04/2020 15:12

I have kerataconus in both eyes. Left particularly bad, as a pp has said bad enough to not be able to read the top line of the chart. I wear gas permeable contact lenses in both eyes. Left then has mediocre but better than without vision and right pretty good!
My right eye now does most of the work.

Ive been offered a corneal transplant but dont fancy it at all and as my vision is fine to drive and manage day to day I wont consider it.

Mine has been stable for years but was closely monitored during 2 pregnancies as it can make it worse. I didnt for me luckily.

I have found that opticians especially the likes of spec savers cant always pick it out and are usually quite interested in having a good look when they realise!

wowfudge · 06/04/2020 15:19

Why haven't you contacted the opticians you were tested at for clarification?

Original poster
funinthesun19 · 06/04/2020 15:28

wowfudge I’ve tried several times today but there’s no answer. I’m guessing they are closed for now.

Thank you for your messages. There are so many questions I want to ask...

OP posts:
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