Hi all advice please

[Lewigreg]

Hi all,

I've been suffering with KC for over 10 years now to the point where it's quite distorted and blurred in my right eye.

I've basically just had 6 month check ups via the NHS. I was discharged at one point for a game or few years as they said they couldn't do anything and the fact my vision was good in my left eye and wasn't impacted in general vision unless I shut my left eye.

Anyways I went to. Specsavers last year from for a test due to me noticing a blur in my left eye at distance. Specsavers noticed that KC had also started in my left eye. It was the first I'd noticed last year in terms of any blur or vision problems with my left eye.


I then got referred back to a consultant who confirmed it was in my left eye but very minor compared to the right.

At this point I was told about gas permable lenses (I'd never been told about these before). It was advised to get one for my right eye and all though it was a challenge due to how distorted the cornea as they got me one.

They just planned to monitor the left eye as it was minor and vision was good.

This was last Oct and I've struggled with the lens really badly. I've had various infections so have had to put on hold a few times and I've really struggled getting it in.

I've been back to discuss the lens a couple of month back and I also mentioned as I'd noticed text and people eyes becoming blurred at a slight distance with my left eye - my general vision seems to use more my eye as my brain seems to have bypassed the right eye.

They put it down to dry eye and told me to use compresses and to persevere with the lens too.

It still want right and I knew something wasn't right with my left eye. I went back and I've seen a optician who's said the lens was a very bad fit and no wonder I couldn't use use it properly. He's got ordered me another wh Ch I should get in two week - also will th soft edges and clear rather than blue.

I the. Got referred to a consultant who's checked my left eye KC and confirmed it had deteriorated from last June when Specsavers had spotted it (I knew it had!) they've now referred me for crosslinking in both eyes and also the intracorneal rings in my right.

I'm sure this could have been sorted quicker. All they kept saying is due to being 35 it wouldn't progress.

I've spoke with my PMI company (insured through work) and although they wouldn't cover it as a condition last year it is now covered as is cross linking.

I'm looking at a 6-8 month wait in the NHS and I'm concerned at how my left eye has deteriorated over the last 6 months and I don't want it anywhere near as bad as my right.

Has anyone had both procedures done and what results?

I'm based in Halifax, Yorkshire so is there anywhere near recommended as I'll prob go down the private route.

My insurance are just asking for the surgery procedure code which I'm trying to track down.

Thanks all and apologies for the long post.

[Bulls Eye]

Hi Lewigrey

I read your account and find it so sad that you never got offered the opportunity of CXL earlier by the healthCARE professionals.

Sadly as well there are no active KC groups in the North so apart from the forums and social media thats the only self help interaction available.

Dry eye and badly fitted contact lenses in my opinion will result in scarring of the cornea and if vision is so poor the only option then is a corneal transplant for which the statistical outcomes are still undisclosed.

I hope that you get a positive response to your request for a recommendation here. The response when I raised that question here was negative.

Good luck.

[Bulls Eye]

Oh and that old chestnut "it does not progress beyond 35" is just bad advice and completely wrong.

Mine progressed after I was 50! Every case is different

[Bulls Eye]

You may find this of interest but a fair journey from Halifax.

viewtopic.php?f=1&t=16295

[Lewigreg]

Hi thanks for the reply and link I'll look that up.

My NHS optiacian Mr Ramsdan is re-making me a lens that should be ready in a couple of week. I'll see how that one is.

I asked the question why crosslinking hadn't been mentioned previously last Fri at my appointment and I was told that it's only been available on the NHS for about 18 months.

I'm frustrated they didn't monitor it closely. Friday was the first cornea scan I'd had in years and they had nothing previous to compare it against strangely.

Previously my private health didn't cover KC until Feb this year (found that out yesterday). Fortunate my they now cover it as a condition.

I'll be going private from now on. It's just frustrating itbwasnt minitored closely or maybe my right eye could have been treated sooner.

[space_cadet]

Leeds (St James') do both NHS and Private KC treatments and not too far from Halifax, am in Leeds myself n happy to meet up for a cuppa if youd like a face to face chat with someone x

[Lewigreg]

Hi,

I've spoke to St James and they mentioned a consultant called mr ball.

I've also spoken with Spire Hospital in Elland who have a guy called Mr Musa and The Yorkshire Clinic who have a guy called Mr Khan.

I'm wanting to find out who's the best at it with the most experience but I'm guessing anyone of them carrying out the procedure will be suitable.

Will they do one eye first? I'm concerned of having no sight if I get both done.

It's either get the bad one done first with crosslinking and the intra rings

Or

Get my good eye cross linked first but have no sight for a few days (my right eye is that blurred).

[Bulls Eye]

Lewigrey

I have been waiting to read further input from other KCers but sadly so far there is only myself and Space Cadet who makes you a kind offer of a meet up. Its still very much a case of self help.

CXL was approved by NICE in 2009 which meant that subject to funding approval by each NHS Trust this should be available on the NHS. I only know definitely of two NHS hospitals who do offer CXL - Liverpool and Moorfields (London). There should be a list available of all NHS hospitals that do currently offer it but I am not aware of any, even a list issued this charity. CXL was being done privately before 2009. It can be done at any age as long as the KC progression is not too advanced - i.e there is sufficient thickness - not too thin/no scarring.

Even CXL is not a straightforward decision - there are various methods/combinations - epi on or epi off.

Once diagnosed with KC in my opinion every patient should be monitored with six month check ups to record the topography but as you confirm its not happening! Sadly we have a dysfunctional lottery NHS system which has progressively corporatised and rather than being patient needs led is be financially led. Its become a system in crisis and one of neglect as it cant cope with the demand.

There are some good posts on here on CXL which can be found. One of them from Gareth illustrates financially why it makes more sense for the NHS to focus on preventation (CXL) rather than ignore the condition until the patient can no longer manage/cope involving more expensive solutions as the conditions advance like contact lenses, non evasive and higher risk evasive surgery (intacs/corneal transplants)

if you best dominant eye vision is in your right eye and it has been diagnosed with KC get this done with CXL first thats my advice but speak to the health professionals who will examine you.

Drew Thompson (optom) works closely with consultant Opth Mr Rahman whose speciality is KC and has now gone totally private with the Spire at the Fylde Hospital having been practicing at the NHS Blackpool Victoria Hospital.

Another consideration in making a decision is the quality of the equipment they possess, which is incredibly expensive. Some NHS hospitals such as Moorfields are likely to have the best and latest equipment so if you go on the NHS or private at these hospitals is not going to make any difference other than there being less waiting and paying a fortune, however if you totally covered by insurance its not a problem.

Let us know when and where you find the gold standards of KC healthcare.

[Bulls Eye]

Do personal research on the internet which is a valueable source of information to enable you to self help -

http://www.20-20visionperfection.co.uk/ ... ran-rahman

https://www.spirehealthcare.com/consult ... -c4521561/

[dalbeath]

Can't progress after 35 ?? This drives me nuts to hear this. I was only diagnosed in my left eye at 39 and at that time my right eye was 100% fine and I was told by the Edinburgh Eye clinic it was impossible to get it in my right eye as I was so old ... 1 year later I had my right eye cross linked.