how does KC progression manifest

[sarkac]

Hi,
I would like to hear from people , who have been through progressive K how a progression can manifest.
Symptoms , and how fast it progressed , and any warning signs I could look out for.
I chose not to go ahead with C3R which has me checking my vision for ghosting every half hour
I am doing topography every 6 months.
I do know it varies from person to person , but any info would help me learn
Thanks
sarkac

[Andrew MacLean]

sarkac

My own experience has been that long periods of stability have been punctuated by rapid episodes of change: change both in the shape of my cornea and in the level of correction I have needed.

My lens becoming unstable on my eye has often been the first intimation I have had that things are changing.

I have always checked my vision every day (I look from my window and read the number plates of cars parked along the street).

Every good wish

Andrew

[sarkac]

Thanks you so much Andrew for sharing that.
I would like to , if I may , ask two questions
how long did a stable period last for you?
and how rapid was the progression, does you vision change something like overnight, and how long a progression lasted.
Thanks
sarkac

[Andrew MacLean]

I could remain stable for months or even years and then notice a change over a couple of days. In every case I was able to arrange an emergency appointment to see my NHS optometrist within a day or so of my lens starting to pop out of my eye, or my vision changing.

Andrew

[caroline6505]

Hi

I was diagnosed with KC about 12 years ago after I kept having visual disturbances, migraines, etc. I went to my GP who sent me straight away to see an opthalmic neurologist who diagnosed KC. I was suffering from migraines (apparently one can get migraines without having a sore head, but having visual disturbances, etc) and it was only through the course of investigating that that KC was spotted. I was unaware that there was any issue with my vision. A few years later, I had my eyes tested and became aware looking at various lenses that my vision could have been better and so trialled about 32 pairs of contact lenses (various types). After a year, I gave up due to poorly fitting lenses and scratched corneas! After having regular checkups my vision appeared to be stable for 11 years and I had actually thought it had stopped. Back in April this year, I became very aware that I had problems with my vision – I'm a graphic designer and really started to struggle. Went to the opticians who tried to persuade to purchase a £325 pair of glasses that I knew were no good whatsoever (indeed, after 1.5 hours going through lots of lenses, alarm bells started ringing for me). I therefore decided to spend the £325 seeing a specialist in East Grinstead expecting to hear that everything was fine/easily resolves. Instead, I was told that I actually had Pellucid Marginal Degeneration (apparently, this can be easily mistaked for KC) and had C3R 8 weeks ago in my right eye and 4 weeks ago in my left eye. I'm also having an ALK (Automated Lamellar Keratoplasty) carried out on my right eye next week. So, to cut a long story short, I went through a very long period (11 years) of relative stability followed by a dramatic deterioration in the space of a year.

Best wishes.

Caroline.

[space_cadet]

My KC was dx in may 2009, in march 2010 I had a transplant on right eye the then worse eye, also march 2010 I was confirmed as legally blind (so from dx to dx 10 months) my KC had developed over easily the previous 10-15 years but no one would listen to me, I had all tests known to humanity including a CT scan n MRI prior to teh KC being dx.

[liam82]

I was only diagnosed in january, when i started to notice ghosting. I think its progressed quite rapidly over the last 8 months, but i had cross linking in the right eye which has really improved things. MY right eye is mostly fine, and i can still read every line on an eye chart. But its gone from showing no signs of KC 6 months ago, to getting quite a bit of ghosting with lights,tv's etc.

So i reckon its probably pretty fast.

[sarkac]

Hi Liam82,
Did u go for CL on your non KC eye? what did you do for the one with the KC, and after CL did u still see a vision change in your RE in the last 6 months ? ?

[NickDash]

Andrew

In the vast majority of patients Keratoconus is progressive during the second, third and forth decade of life.
Whilst the progression is not always gradual the inevitable process is occuring until the corneal naturally cross links with age. (as our skin ages and looses its elasticity so does the corneal, so in some respects the aging of the corneal helps slow the progression).

Why is KC not uniform in its progression?
The likely answer here is that the corneal weakness is rather like the tectonic plates of the worlds geography. From time to time the weakness of the adhesions between layers breaks giving rise to a slip. So you can go for months or years without too much of a slip and then a series of events occur as the mechanical forces come to bear on the geometry of the surface.

However if you are under the age of 40 beware. Seek to halt its progression as soon as possible.

Where are we with regard to treating the keratoconic patients in 2011?

The wait and watch philosophy changed 10 years ago for many of the worlds leading specialist, with the advent of corneal cross linking.

The first line of defense should be to treat the underlying pathology at the earliest opportunity with subsequent visual rehabilitation with contact lenses.

Whereas in the UK the standard route is to keep patients in contact lenses and mask. Like a plaster over an infected wound, it masks the condition and allows the disease to progress unseen. (most especial younger patients. Early treatment is more effective and less invasive with improved outcomes. Once the disease process has been halted then a bandage (contact lenses) can be worn, knowing the cause of the condition has been arrested.

Without treatment things just get worse and the prognosis deteriorates. So at least halt any progression at the earliest opportunity.

Nick Dash
Optometrist

[liam82]

Hi Liam82,
Did u go for CL on your non KC eye? what did you do for the one with the KC, and after CL did u still see a vision change in your RE in the last 6 months ? ?

Ah sorry, i meant left. I had it done in the eye with more prominent KC!