Keratoconus progression..

[scottz750r]

Hi guys,

I was diagnosed with Keratoconus about 5-6 years ago in my right eye and up untill this point i've been getting on fairly well unaided. But now, of a night i'm finding it increasingly difficult to see whilst driving, which is especially bad for me as i do it for a living and have NO other trade/skills i can fall back on. my question is this, what are the odds of this worsening to the point i can no longer drive lorrys? I'm 24, just taken out a mortgage and for something like this to take my life away seems stupid. i know there is a few operations out there, but none are a dead cert... in-fact two of them seems to have made things worse for people, especially the corneal transplant.

I have an appointment with the NHS on the 20th of this month and i shall be asking about CXL.. they said on all my other visits, "oh we'll leave it untill it starts progressing before we do it" well this time i'm putting my foot down, i feel it's getting worse and i'm going to push to make them do the operation for me, why wait when it can just be done now and potentially save my job & house.

Basically i just want to know the odds of it getting worse to the point i can't do my job, or worse live my normal life.. i'm really starting to get paranoid about this now. Can any one here give me tips as what to say at my appointment as usually they just try to rush me back out the door. Ive tried a rigid lens before but it did nothing for my vision and just felt like i had a bit of grit stuck in my eye, very annoying..

Thanks,
Scott

[kieran19685]

Can't really put a number or percentage on it

Everyone is different and it progresses differently.

I'm 29 and it's progressed a little but I can still do my job as well as others !

There's plenty of options , Clx , lens etc

[CrippsCorner]

"oh we'll leave it untill it starts progressing before we do it"

This is the biggest load of rubbish I hate about 'know it all' consultants in the NHS... you're absolutely right, it should be done as soon as possible. The purpose of CXL is to halt progression, it doesn't make it better. So the longer you leave it the worse it's going to be. My biggest regret in life is not doing it sooner, maybe I should have researched more but I was new to the disorder and didn't know the facts.

I'm sorry to say this mate as it's not what you want to hear but less than 2 years ago my eyesight was perfect. Now, I can't drive at night... probably, ever again.

[scottz750r]

I'm sorry to say this mate as it's not what you want to hear but less than 2 years ago my eyesight was perfect. Now, I can't drive at night... probably, ever again.

Thanks for the reply, do you have KC in both eyes, or just one? do lenses not help you whilst driving at night then?
I'm gueesing you've now had CXL and it hasn't actually stopped it progressing?

[CrippsCorner]

I had to come back online as I was concerned my last post would cause a lot of worry. I didn't mean it that way, I was just frustrated at your similar experience with the NHS. Nearly everyone that has keratoconus has it in both eyes, it's just that one is usually worse (faster progressing) than the other. I've had CXL peformed on my worse eye, and am getting the other done in a couple of weeks. Glasses and contacts help, of course, but even with them I am unable to drive at night, the reflections I get from lights is just too much to take. It's a very scary experience, however... my situation is like this simply because I let it get too bad before doing anything about it. That's my regret.

I hope that if you're only just getting to the point of needing glasses or contacts, and you're able to get CXL performed soon, you should be able to save your eyesight at a better level than me. By the way, if you're at the earlier stages like mentioned, personally I'd look at high astigmatism versions of normal, soft lenses. I find the sight to be almost as good as rigid ones and so, so much more comfortable. Any more questions, fire away.

[scottz750r]

I had to come back online as I was concerned my last post would cause a lot of worry.

I won't lie.. i did start to stress and worry over that comment, so thank's for commenting again hehe.
luckily, only one eye of mine is actually bad.. but glasses wont correct it, i've only ever tried a rigid lens before and that didn't help at all, i think it's quite servere in my bad eye. but hopefully if i have CXL in my good eye i can maintain my vision how it is at the moment. with my good eye, i can see right down to the second from last on the eye chart, not sure how to say that in correct terms.

is there literally nothing you can do in order to get your sight back up to driving standards? i think it's strange how doctors today can perform such complicated procedures like heart transplants but cannot fix a seemingly little problem such as Keratoconus.

[CrippsCorner]

Have you had any scans yet showing your progression? Are you going for CXL on the NHS? If so, unfortunately, some places will make you wait 6 months to 'prove' your progression, which is ridiculous imo. I had no choice, and had to go private as NHS funding isn't available anywhere in Essex for CXL. At least it meant I only had to wait a week... I ended up with 6 months of scans however just due to how slow everything went. If I knew then what I know now, I would have gone ahead with the procedure straight away. Ultimately I made the decision to get my worse eye done first, purely because we could see it was progressing quicker.

Keeping your eyesight in your good eye is of course very important, but I get halos and glare etc. from my worst eye and didn't want that getting any worse! As it can be very distracting. Maybe you'll choose to do things the other way around, I don't think there's a 'right' choice here... either way I'd get those scans done as soon as possible if you haven't already.

I don't think I'll be able to drive at night ever again. Saying that, I'm still waiting for a post-CXL prescription for my right eye (they mucked up my order) so maybe that'll make things slightly better. I'm also testing several cleaning products on my windscreen to try and minimise glare etc. It's annoying, as during the day it's usually fine, other than slight reflections from brake/traffic lights and number plates.

We all hope for a cure one day. You never know... currently some research going on in Iran, you'll find information if you look around other posts on here.

[kieran19685]

I think it would be useful to advise you that although the success rate is extremely high its still a medical procedure and therefore not risk free, Also your vision may become alot worse to start with and last anything up to three months before returning to normal.

The long term affects are also unknown, you are effectively ageing your eyes by 20 years.

However its still worthwhile looking at as they say its riskier leaving untreated.

Personally if i was you i would monitor the progression, it may not even progress any further.

Thanks

[scottz750r]

Have you had any scans yet showing your progression? Are you going for CXL on the NHS?

I've been having scans for the past 5 tears yes, every time they say no progression and rush me out the door, but this time i'm not having it, i've done more research on this and now that it could potentially cost me my job and house. I want to know if I've had no progression or if there has been a slight change, i want to know if i actually have it in my left eye, because as of yet, i've not been told anything about this eye as i still have good vision in it. I'm going to guess that i do have it though, because i get slight glare in that eye at night, especially with white lights, when watching tv and i cover one eye, i notice it.

I want to no all my options, and which would be best for me.. It's good to have a Forum like this, as everyone here is pretty much going through the same thing. i'm petrified of loosing my job over this, i think about it day in day out, it's affecting my life with my partner because although she worries too, she gets upset with me obsessing over it, and constantly covering my good eye to 'test' my bad one, i know this probably sounds silly to all of you, but i just can't help it.
I know this can make you become classed as blind, and i have no idea what i'd do if it ever come to that.

thanks for all the comments btw, it's been very helpful.

[Anne Klepacz]

Just to add that if you'd like our information booklet about KC and other info on the options for the condition, do PM or e-mail me your postal address and I'll send them to you anne@keratoconus-group.org.uk We're not just a forum!
All the best
Anne