kz
Member
Registered: 9th Aug 02
Location: Southend, Essex Drives: Mini Cooper S
User status: Offline
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I'm one of the 3% 
I've had two operations performed called corneal collagen cross-linking which strengthens the weak bonds in my eyes. The first was done in July on my worse eye as the disorder I suffer from (keratoconus) was progressing fastest in that one. The aim of the operation isn't to make your eyesight any better; unfortunately there is no 'cure' but simply to stop it getting any worse. Anyway, that one went without a hitch and although full recovery took a few months, I was back up and running, i.e. driving and working the following week.
I was a bit nervous about getting my better eye done as you know, it's better. There's always a chance of there being a problem with any operation but as the first one went so well I decided to go for it. After the first few days it started to get slightly better, and I was happy... however yesterday (9 days in) my vision took a turn for the worse. I didn't know what was happening but as I was putting my eye drops in I noticed my pupil had tuned grey. I went to bed worried and made an appointment at the hospital as soon as I got up in the morning.
Turns out I've developed severe 'corneal hazing' which is going to affect my vision for months... possibly up to a year. Out of that eye, I'm struggling to even see how many fingers are being held up  it's getting me rather down tbh and I know I'm in this for the long haul. I'm going to miss my Clio.
Sorry if this is coming over as a bit of a rant/vent but with time off work probably increasing I'm going to be spending a lot of time on the internet feeling sorry for myself with font increased to old people's mode!
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SVM 286
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Registered: 13th Feb 05
Location: pain
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Bloody hell kz!
Do you know what has caused the hazing? Is it an infection?
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Balling
Premium Member
Registered: 7th Apr 04
Location: Denmark
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Shit.
quote:
Originally posted by kz
going to affect my vision for months... possibly up to a year.
Then what? Will it eventually get better? Will there be any permanent side effects? What happens now, with your existing condition?
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Tiger
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Registered: 12th Jun 01
Location: Leicestershire Drives:Astra VXR
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Basically save your dosh for now and hunker down, weather the storm of the winter and no doubt you'll be feeling much better by spring!
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baza31
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Registered: 19th Apr 03
Location: yorkshire
User status: Offline
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Can't think of anything worse than losing sight. I feel sorry for you . I presume you had lazy eyes ? How do they put it right ? Hope it gets sorted for you quickly
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whitter45
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Registered: 15th Nov 02
Location: Norton
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awful news - I hope you recover quickly
[Edited on 09-12-2014 by whitter45]
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Ben G
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Registered: 12th Jan 07
Location: Essex
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Feel sorry for you mate.
A few times i've dropped a contact lense out of one eye and had to work with 1 in. Not a massive problem but it made me feel quite sick as one eye saw perfectly whereas the other saw fuck all.
It's not something i'd wish on anyone tbh and I hope your sight comes back eventually.
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taylorboosh
Member
Registered: 3rd Apr 07
User status: Offline
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Id wear a patch imo? Other eye sees fine so could still drive?
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Balling
Premium Member
Registered: 7th Apr 04
Location: Denmark
User status: Offline
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quote:
Originally posted by taylorboosh
Other eye sees fine
He said his other eye was initially worse, so probably not.
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taylorboosh
Member
Registered: 3rd Apr 07
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Will with a contact or what not
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kz
Member
Registered: 9th Aug 02
Location: Southend, Essex Drives: Mini Cooper S
User status: Offline
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Thanks for your sympathies guys!
The hazing is caused by the cornea not repairing itself properly… why that has happened I do not know. After it goes away I should (hopefully) get back to where I was vision wise, it's frustrating as hell though that I'm going through all this shit for no improvement!
I don't feel particularly confident with my other eye. I don't think I could drive just relying on it… plus it doesn't help that since I had the operation performed on that one, I've still not received my new contact prescription! Five months I've been waiting, bloody NHS.
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boylers11
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Registered: 27th Jul 06
Location: Shropshire
User status: Offline
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Loads of my patients have had collagen cross linking. The vast majority go very well, however, as with any surgery, there is always a risk, sometime large, sometimes small, but unfortunately, something, for someone has to go wrong/take longer to settle.
The cornea is one of the most delicate and complex structures in the body. Obviously I can't comment on your case, but you'd be surprised how quickly some relatively serious corneal issues sort themselves out. Keep positive and do everything your surgeon tells you to the tee!
With regards to your CL prescription, it's probably not as straight forward as it seems, don't be so hasty in slagging off the NHS. There are all sorts of protocols and potential reasons why this has not yet been done. When your next up at the hospital, just ask what the state of play is with them and enquire, that's what they're there for!
Good luck!
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kz
Member
Registered: 9th Aug 02
Location: Southend, Essex Drives: Mini Cooper S
User status: Offline
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Thanks dude, I've been prescribed Maxidex which is some kind of steroid it seems! Going in every two hours atm... another check up later in the week.
I do blame the NHS because they took 6 weeks to get my first contact in... and they ordered the wrong one by mistake so now I have to wait another 6 weeks. I actually work for the NHS myself and the ordering system has gone insane, everything either takes forever or gets cancelled altogether. We ordered new (paper) wall charts to log our holiday and sickness on for a total cost of £4. Cancelled. Told to use Notepad instead!
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spencer88
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Registered: 6th Oct 08
Location: cornwall
User status: Offline
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I had Laser Eye Surgery this year and had the option of LASIK or LASEK.
Basically, one was more expensive than the other as it uses laser to cut the eye, rather than a mechanical method.
Needless to say I chose the more expensive option  No problems. I know it's not always an option but could you look at going private? In essence you get what you pay for, maybe paying for it done could see better, quicker results?
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boylers11
Member
Registered: 27th Jul 06
Location: Shropshire
User status: Offline
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Hopefully the Maxidex and lots of patience will do the trick.
Your hospital must have a different system to ours. When we order a CL, it's with us in a couple of days then we shuffle the clinic around to get the px in to collect it within a couple of weeks. Our system works very well, even though we are snowed under.
I agree some Aspects if the NHS are crap. We have to get permission to order paper/pens, yet our chief exec has just accepted a £15k payrise to take her to £225k!
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boylers11
Member
Registered: 27th Jul 06
Location: Shropshire
User status: Offline
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quote:
Originally posted by spencer88
I had Laser Eye Surgery this year and had the option of LASIK or LASEK.
Basically, one was more expensive than the other as it uses laser to cut the eye, rather than a mechanical method.
Needless to say I chose the more expensive option No problems. I know it's not always an option but could you look at going private? In essence you get what you pay for, maybe paying for it done could see better, quicker results?
Private in this case would have meant paying £££ just to jump the queue matey.
Cross-linking is such a specialist thing anyway, he will only have got/be getting the best level of care from the best qualified people.
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baza31
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Registered: 19th Apr 03
Location: yorkshire
User status: Offline
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It's not fair to blame the nhs we are very lucky we have it . If you don't like the nhs go private it's simple .
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kz
Member
Registered: 9th Aug 02
Location: Southend, Essex Drives: Mini Cooper S
User status: Offline
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I did go private, it's not available on the NHS in my region... postcode lottery is another pain in the arse with the NHS, if I lived 50 miles to the west I would have gotten it for free 
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boylers11
Member
Registered: 27th Jul 06
Location: Shropshire
User status: Offline
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Ahh, bummer. Well keep us updated with your progress. It'll be worth all this ball ache eventually.
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kz
Member
Registered: 9th Aug 02
Location: Southend, Essex Drives: Mini Cooper S
User status: Offline
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I know Googling never help these situations but apparently 8% of patients this happens to never actually regain any vision acuity... that's scary as fuck. Even the other 92% never fully get back to where they were, just within 'acceptable levels' whatever that means. As long as I can drive again I guess 
I think if I had to give up driving completely (already can't do so at night) I'd still want to own a car as I just love them... maybe get a fixer upper for my spare time.
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baza31
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Registered: 19th Apr 03
Location: yorkshire
User status: Offline
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I would imagine that 90% of the 8% are just internet wierdos . Some of shit you read on there is a laughable
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boylers11
Member
Registered: 27th Jul 06
Location: Shropshire
User status: Offline
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quote:
Originally posted by kz
I know Googling never help these situations but apparently 8% of patients this happens to never actually regain any vision acuity... that's scary as fuck. Even the other 92% never fully get back to where they were, just within 'acceptable levels' whatever that means. As long as I can drive again I guess
I think if I had to give up driving completely (already can't do so at night) I'd still want to own a car as I just love them... maybe get a fixer upper for my spare time.
Are they UK or world figures? If they're world, I'd imagine the UK percentage of better outcome would be higher to be honest.
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Bonney
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Registered: 14th Nov 04
Location: St Helens
User status: Offline
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Don't get yourself too down about it. Just keep focused on getting better and try not to believe all the hype online!
Been going through a lot these last few months with people very close to me been ill and googling the symptoms only made my Ill with worry.
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kz
Member
Registered: 9th Aug 02
Location: Southend, Essex Drives: Mini Cooper S
User status: Offline
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This is the biggest report I've found on the subject, read it from head to toe twice now lol, starting to learn quite a bit! Boring for most people of course...
http://www.vision-institute.com/UserFiles/File/CXL%20Haze%20Published.pdf
But boylers11 perhaps you could answer one thing for me, could you explain what this means?
Collagen crosslinking is a promising new treatment for stabilizing and strengthening the cornea in keratoconus and ectasia. In the clinical setting, a typical corneal haze is noted after CXL in most cases. Koller et al evaluated anterior stromal haze, which was graded on a scale used in cases after PRK25; the mean grade was 0.78, 0.18, and 0.06 at 1 month, 6 months, and 12 months, respectively
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boylers11
Member
Registered: 27th Jul 06
Location: Shropshire
User status: Offline
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Sure, basically they've used the same scale to measure corneal haze (mistiness) after CXL as they used on a previous study, which measured corneal haze after PRK (photo refractive keratectomy) aka laser refractive surgery.
The scale they have used isn't a universally recognised one by all accounts, but basically 1 = total corneal haze and 0 = totally clear cornea.
In a nut shell, the study you have read means you're very misty after 1 month, less misty after 6 months and significantly less misty after 12 months.
That study was over 3 years ago though and in India.
A similar study found that 3% of patients have a relatively permanent reduction of vision by 2 lines or more on the letter chart and obviously the better your vision was before CXL, the more vision you have to lose. Again, the same study found that for the people whose vision was 6/6 (20/20) or better prior to surgery, 8% of them lost more vision than those whose vision was worse than 6/6.
If it makes you feel any better, I see loads of patients who have had complete corneal grafts, which is much more invasive than CXL and their vision can eventually become very good at the end of a very 'long haul'.
Hopefully the above info makes sense and helps you out. If you need anything else, just shout.
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