Out come of actually seeing the rigght person

[space_cadet]

Got to see the person I was told I had to see, after initally having my name called by the guy who refered me to his colleage - leaving me thinking 'great the fun is starting again'. Explained tohim 'you wanted me to see mr x' so sent back to waiting room, a few mins later called back thru. Given basic eye chart, eyes getting worse could only just about make out the very top 2 rows of huge print really not good.

Had the test thing with the color image of my cornea done AGAIN, to find things have deteriorated in my right eye 'significantly' since I last had one 4 months ago, - felt like saying 'no shit'.

A few weeks ago I was ranting about being unable to open my eye, that was confirmed as I have 'significant' scaring on my right cornea, so am now on the waiting list for a right graft and he wants me to in the mean time have a lens trial with left, but as a short term as feels it needs a graft as well.

So semi ok semi not.

Just want to curl up and cry.

Lea
xox

[GarethB]

Have you asked about soft lenses for KC?

I have read a couple of case studies on the web where people with corneal scaring have tried the soft KC lenses and the opaqueness of the cornea due to the scaring has reduced which has meant they have avoided the graft route for a bit longer.

If it does not work, the graft route is still an option.

With the range of lenses available, I am sure it is possible to fit lenses which are less likley to casue corneal scaring. Should someone go so far as taking action against an optom it will be hard to determine if scaring was a natural progresion of KC or the lenses. I have spoken with several optoms now who are worried about being sued by a patient that excluded from CXL beacuse of corneal scaring which may be a result of poorly fitting contact lenses. (Toned down at the request of the moderators!)

Hope everything works out for you.

[space_cadet]

Iv had no lenses as yet, so we shall see. Just fed up of waiting from May till today to find out their was a significiant deteroriation in myright eye.

Oh the fun and games of the NHS! J

[GarethB]

OK, appolgies jumped to a conclusion, so sounds like the scaring is hydrops but it can heal well enough that scaring is not an issue and one person on the comitte had improved vision post hydrops.

I do still however stand by my concerns regarding lens fitting and corneal scarring.

Hope you have a speedy recovery.

[MartinC]

who did u see?

[space_cadet]

I am not going to post publically the name of who I will see but under the 'care' (or lack of most of the time) of both Rutland Lodge and St James.

Lea
xox

[Lynn White]

Just commenting on the discussion re corneal scarring ...

There are several types of corneal scarring and indeed scarring is part of the conventional definition of keratoconus. Hydrops is a major cause and indeed Lea's scarring appears to be due to this.

However, Gareth also has a point about rigid lenses possibly causing scarring. It has long been debated whether rigid contact lenses themselves contribute to a) scarring and b) actively progressing KC. The long term CLEK study of KC in the US implicated rigid lenses on both counts and for quite a while, contact lenses were regularly quoted as one of the causes of KC.

The problem with this subject is that there are no definitive studies comparing contact lens wearers and non lens wearers... for fairly obvious reasons! It is almost impossible to find anyone in the US or UK who is keratoconic and who has not worn some form of contact lens correction - and most research is done in these two countries. However, I HAVE worked in a country where KC incidence is high yet a large number of keratoconics do not wear contact lenses. It was there that I noticed that such patients did not have a particular type of scarring. Yes, they had the irregular scarring typical of Hydrops or as a result of eye rubbing - but they did not have the characteristic circular "scuff" scarring so typical of KC RGP wearers I had seen in the UK - many my own patients. I tried very hard to get researchers interested in studying this population but there was absolutely no interest from the UK or US.

It was because of this issue that I looked harder at correcting KC with soft contact lenses and more lately with Silicone Hydrogel lenses. And I have found that such characteristic scarring actually reduces when patients are swapped to SiH lenses, as does photophobia and general discomfort. I have some examples on my website.

Now of course this is an emotive issue. There is strong evidence that correctly fitting RGPs (i.e lenses that clear the cone rather than bear down on it) do not damage the cornea in this way - it is flat fitting lenses that do the most damage. So, fitters who really know what they are doing and keep a close eye on their patients rarely see the problem.

However, there is also increasing evidence (eg Klyce, 2000) that apical clearance RGPs actually cause a vacuum effect when they flex on blinking and that this can cause a steepening of the cornea. Thus a good fitting lens can become a flat fitting lens within around 6 months. Add into this mix the fact that flat fitting lenses give better vision than apical clearance ones, and you get a situation where patients "twig"that a better fitting lens means worse vision and thus they tend to avoid coming back....

Many practitioners have tacitly accepted this situation over the years because frankly, there was not much else you could do about it. Patients had to see and there were not many other options. However, this is not now so. More and more contact lens options are now available that try and avoid corneal bearing - such as the SoClear, sclerals and the new Synergeyes ClearKone. The latter says in its PR -the design is optimized to vault the predominant irregularities of the keratoconic cornea, thus effectively restoring vision to a vast majority of irregular cornea patients, without compromising comfort or eye health, even in the most challenging cases. This is because it is designed to vault the cornea and thus not bear down on it.

I myself have decided that I will not fit any new cases of KC in rigid lenses - more fully explained in my new blog. This is after several years of tracking corneal scars versus lens types and particularly tracking patients who do only wear a lens in one eye. Many don't wear a lens in the worst eye as they simply cannot tolerate one... and its uncanny how often the worse eye may have hydrops scars but NOT the circular on axis central scars that the RGP wearing eye has.

Obviously more research needs to be done - but its a difficult one to do in this country because, really, you would have to have controls in no lenses at all...

Lynn

[rosemary johnson]

Lea, I'm not surprised you wanted to sit down and cry!
AM I understanding this right: you have never got to try contact lenses, and can still read some of the Snellen chart unaided and they are putting you down for grafts?
Strikes me they should definitely - and you, of course - be exploring lens options before plumping for drastic and irreversible surgery.
I haven't been able to read any of the chart - or even see where it is - for eyars before I as recommended to grafts. My ungrafted and now ungraftable eye still can't, of course, and the grafted one can ony see the top letter with a pinhoole - or if someone stands a copy of the chart below the mirror!
DOnt do anything drastic to an eye that's had a hydrops till it's had plenty of time to settle down - it can take a while for them to settle fully.
I'm sure your consultant has his reasons, and of course I haven't seen your eyes.
The old adage is that surgeons want to do surgery...... and I'm sure I've met at least one who saw a couple of eyes with nice neat cones in which his embroidery would look very pretty........
Rosemary

[space_cadet]

I say thatI can see the top 2 lines but that is due to knowing what they have on them. And the examiners knowing that. The other fun thing is I have dyslexia so I may well be seeing them wrong anyways.

Lea
xox

[crakerjacker]

I would request to see Mr James Ball at St james. he is my consultant and he is very nice and i believe he is a Head Consultant (or whatever they are called) at St James. Thats who I see at Yorkshire Eye hospital.