Just told I have KC!

[Vigilante]

Hey all,

First a little history about myself,from childhood I have had a alternating strabismus (squint) but have never needed corrected lens or had an operation to correct this, both eyes were 20/20 vision. 10 years ago aged 20 I started to see a kind of double vision/ghosting when looking in mirrors at first then with light on dark backgrounds or dark on light with both eyes the same even when covering the other eye. I worried myself sick that I had a brain tumor or MS or CJD or anything.

I went to my gps with this problem who basically told me it was stress/anxiety/depression causing this but I also did see an Ophthalmologist at my local hospital who could not find anything wrong at all and gave me the answer "glare"?

I carried on with various episodes of worry there afer thinking all the time that some major illness would strike me down anytime.

Now 10 years have gone by, I now live with my fiancee and our 6 month old twin girls but for the past year or so the vision in my left eye has got much worst, at first I didnt notice so much because of the alternating squint making me right eye dominant. But if I went to look at the moon now I would see not 1 or 2 but 3/4/5/6 with my left eye these are now quite seperated form the "real" moon with my right eye pretty much as it was when it first came on. This is the same with any lights like trafic lights and text on pc screens even the tv picture which I can see again reaching as far as the plastic bottom of the screen from only a couple of feet away. I have trouble reading any of the eye charts with my left eye now because of the black on white and ghosting effects.

I finally plucked up the courage to go back to my gp and talk about how my left eye is getting quite bad, the gp I saw works at the local eye unit at the hospital so she did check herself and didnt say anything was wrong but she got me 2 appointments at the hospital to check my squint and one for the Ophthalmologist.

These appointments were about 2 weeks ago, the first was just checking my squint with prisms and whatever but I was told that was stable and was not what is the cause of the bad vision (knew this anyway) then I saw the Ophthalmologist, this guy called me through and looked at my medical record from 10 years previous before checking me with the slit lamp for what seemed like 60 seconds with each eye while making me look at his ear. he did not dilate my pupils or seem to even care much. he then gave the answers "minocular diplopia" "nothing wrong" "cant pinpoint it" "learn to live with it" "go to my local optician"

This annoyed me so much I felt like going straight back to my gp and complaining and asking to see someone else, I was going to do just this until yesterday when I walked to the shops and something inside me said just go get a check at the optican...so i did.

The check was performed by the top guy at Vision Express who is the partner according to google, he got as far as checking my eyes with the torch thingy asking me to look straight ahead before putting it back down and asking have I heard of Keratoconus? I said I had heard the name quite excited thinking have I finally found a cure??? he said wait until the full testing is over and he will talk more about it. So he completed the full range of tests including slit lamp again but seemed to take more time than the Ophthalmologist at the hospital and was far more friendly and willing to talk. He then went on to explain my squint which I didnt really need explaining for the 10000th time but listened anyway, before he explained my right eye which is still 20/20 of there abouts has a slight stigmatism but my left eye he thinks has corneal thinning which in his opinion would be keratoconus or something similar. He explained the options I had including RPG lens and transplants but also said in his opinion he would not do anything at present because of my brain supressing that left eye alot with the squint but if I wanted to he could fit the rpg lens wich would take some messing around and possible pain?

So that is where I am at present, wondering why my gp or hospital couldnt see this condition? or is it sometimes hard to see?

[Ian Anderson]

Firstly welcome to the forum

Secondly and some would say don't panic.

Now what you have found is exactly what many on this forum will gave found out before. I.e. That results obtained from different technicians will vary hugely. A lot of opticians have probably never seen a case and as such would not know what they were looking at! I know the last few examinations I have been asked if the juniors could come and be shown what kerataconus looks like. I always oblige thinking that if any one else is seen they may remember what they have seen!

Do not be scared to ask for second opinions. And you may find someone who has modern technology that can generate a good specs prescription. I did in Zimbabwe of all places!

Ian

[Andrew MacLean]

As Ian says, welcome to the forum and don't panic.

Keratoconus can be managed. It seldom leads to the sufferer losing so much sight that (s)he is unable to cope with either contact lenses or glasses, and the prognosis for the overwhelming majority of people with KC is really not all that bad.

Every good wish.

Andrew

[Vigilante]

Thanks for the replies guys, dont think im panicing about having KC so much as wondering if the diagnosis is correct, it does sound the same from what I have read up on so far though, I think to get a confirmed diagnosis (if that isnbt already the case) would reduce alot of worry that I have carried for so many years.

[tremtastic]

I don't know where in Britain you are, but find yourself a local optician who knows a lot about contact lenses and has equipment that will do a topographical scan of your eye. The guys in Vision Express probably don't have the equipment or experience to deal with something like this properly. There's a list here: http://www.keratoconus-group.org.uk/optoms/index.php

And there are potentially better lenses now than the older-style RGP lenses - ones that are easier to handle and more comfortable. A lot of talk on this forum is about the different types and users experiences.

[Vigilante]

Thank you for the link, Mr Peter Pawson at the Machen eye unit is the nearest, one of my gps actually works at this unit too Dr S Inman, and it is the same unit I was tested at without finding anything wrong too by other Drs. Im due to see Dr Inman on Tuesday morning so i will ask for a ref to Mr Pawson.

[munster]

Hi, welcome.

Your OP sounds a lot like mine. I had a squint in my right eye. That was corrected via surgery when I was about 8. I'm now left eye dominate.

My KC started very like yours. You start to notice slight blurring and multiple ghosts around everything. Light circles around all light sources, especially light on dark backgrounds. Night time driving is very poor for me.

My KC was picked up via a routine eye examination. I was then referred to the eye hospital, St Pauls, Liverpool.

I was driving and using computer screens fine without the need for correction until 2004. Thats when my KC was picked up and glasses were prescribed. In the space of 8 years. My vision has gone from unaided to now needing soft contact lenses. Glasses don't work very well anymore. It did depress me to see my vision go like that is such a short time frame. I had to research KC by myself.

In fact, I seen the eye consultant last Friday, He said that he has noticed some progression in the last 6 months, between scans. So i'm being referred to St Pauls again for CXL assessment.