Opinion on KC from Greece

[pydj79]

Hello everyone, and thanks for taking the time to read this, it is highly appreciated.

A brief description of my story,
My name is Kostis, and I am 33 years old living in Greece, and I have KC only on my right eye. I was diagnosed with it 12 years ago, and for the past 8 years it has settled in the state it is now. My vision while writing this is 0/10 on my right eye, while on the left one it is 10/10.

On my day to day basis I can perform every function without even having to wear contacts since my left eye is doing all the work.
Though on my right eye I am wearing a soft contact lens that improves my vision to 5/10.

I have visited 4 specialists in Greece, all of whom proposed I undertake a Corneal graft (transplant).

The reason I am writing this article is that as it is a delicate matter, I would like as many opinions as I can get my hands on, and any opinions and or suggestions would be highly appreciated hence please bear with me for some questions.

These questions are aimed mainly towards people that have taken a KC surgery, and I would like some feedback on this after their surgery, and how they felt.

1. Given that for 8 years my KC condition is 100% stable, would you believe it is worth undertaking a surgery of such magnitude bearing in mind that I have no vision issues (due to my left eye being 10/10), just so my right eye can be 10/10 ?

2. One of the doctors told me that it is preferred NOT to wear any contact lens on my right eye (the eye affected with KC). The reasoning behind this is because he believes that my brain is effectively used to "using" my left eye to see, and hence I will not get any sizable benefit from using a contact on my right eye that will only improve my vision to 5/10 with a soft contact that I am using, or even to 10/10 with the hard contacts (that I cannot get used to wearing). On the other hand he also suggested that there is a hazard that the eye might be infected with the use of a contact, that would result in a forced transplant operation with various side effects.

Hence the question is, if I do NOT opt to take the Corneal graft (transplant), would you agree it is NOT worth wearing the contacts due to the inherent infection risk? And since my left eye is effectively being used.

3. I am thinking of traveling to London for a 5th and final opinion and I was proposed to go to Moorfileds Eye Hospital, and get consulted by one of the D.AL.K specialists, has anyone a specialist to propose that I can visit, not solely on Moorfields, but generally in London?

I know this is my own decision, but as I mentioned earlier I am on the lookout for any opinions and/or comments and most importantly experiences, I can gather about my condition.

I thank you all for the time put reading into this, and thank you in advance for everything.

Best regards,
Kostis.

[Andrew MacLean]

Kostis

Welcome to the forum.

Every good wish.

Andrew

Περίμενα πολύ καιρό για τη χειρουργική επέμβαση μεταμόσχευσης μου.

[Charlottes mum]

Hello there,
I am the parent of a young woman with KC. it is with great interest that I read your post this evening. I shall be waiting to see what the other contributors bring as I am very interested by your being advised not to wear contacts in your KC eye. Thank you for posting and I wish you well.

[andytraill]

Hi Kostis,

Was one of the places you went http://www.laservision.gr/ (from what I understand they are very, very specialist in this condition)? Have you tried piggy backing hard on to soft lenses (partly works for me)?

I'm pretty much in exactly the same situation as you. Though my left needs a soft lens/glasses to get to 10/10. I've had the same thoughts about wearing contacts in my right also. I had a problem with my right and had to completely stop wearing my contacts in that eye, it is pretty distracting now (annoying brain). Sorry not much advice I'm not too sure myself really!

How thick is your cornea in your right eye out of interest?

Andrew

[pydj79]

Hi Andrew,

Yes, the last 2 years i was observed by Mr Kanellopoulos on Laservision. His opinion was my 1st opinion. He beleives that also with "Corneal Intrastromal Ring Implant" in my right eye i will be fine (but maybe this will be a temporary solution). Two other doctors said that this solution can't be done on my right eye. They said that even if i am going to procced with this solution the result will not be the expected. One of them proposed the DALK method (but he can't tell me if this solution is possible to be applied on my right eye). The third one told me that the only solution for me is the graft. The fourth doctor wasn't an expert on KC and he didn' proposed anything to me.

I am closer to the opinion of the third expert, but i want to travel to England and take one/two more and final opinion/s in order to take my decision.

My cornea thickness is around 350μm.

Kostis

[andytraill]

Hi Kostis,

I can't comment over the specialists you've seen. I'm a complete layman. I would say from what I've read Kanellopoulos is really up there with the best in the world, but I have also heard of bad results with INTACS. Part of you (like me) I'll guess is thinking give it a shot but in the real world cost and so on comes into it.

My thickness (maybe thinness would be a better way to say it!) is similar but I've been told I'm too steep for INTACS ('local 85D'? whatever that means, they seem to think it's crazy...) so I suppose in a similar place to you. Has your right eye been CXLed? For me I'm thinking of getting femto pocket CXL then seeing how far I can get with contacts. Both 'piggy back' (which I get a good improvement with) and specialist lenses such as kerasoft. Like you, I believe, I don't want to go for a graft unless my vision through both (suppose mean 'combined') eyes is so bad that I have to. Mainly from a quality if life point of view.

There is another part of me that sees things like keraflex and something similar(ish) from Kanellopoulos developing (and another cornea part cut and 'rotation' from Brazil) and thinks that waiting is the best option. But from meeting with some of the people involved in keraflex at least I'm too far gone for that, which might suggest you are too.

I suppose the key is to look at it completely pragmatically. Given our condition we maybe analyse our vision too much. If we can get away with one good eye maybe we are "lucky". Through the day I know it can be hard because every squint can make you think it's because of your 'bad eye'.

Sorry no answers but I've none for myself either!

Andrew

[pydj79]

Hi Andrew,

Our cases seems to be similar. My right eye hasn't be CXLed because has been stabilized a long time ago (8 years now) and there is no need for CXL.

Kostis

[andytraill]

Hi Kostis,

Have you tried "piggybacking" a hard lens on a soft lens in your right eye?

Andrew