Cross Linking

[John Smith]

Jaiboi,

Yes, this is indeed a difficult one.

On the one hand, the potential benefits of corneal thickening are good. On the other however, we don't really know the long-term effects of such treatment. What if it were discovered that 100% of patients were to go blind within 10 years? I know that is completely unlikely, but it's the sort of thing to consider; which is why Jay is suggesting only treating one eye.

I'm not completely sure on this bit, but I imagine that as you are under 18, then someone with legal responsibility for you must sign a consent form for you to have the treatment anyway. Can you talk it through with whoever would sign your form?

[Louise Pembroke]

ANY procedure carries risks, no matter how well researched it is and this is still a relatively new procedure. They never do two grafts at the same time. Even in other types of surgery such as knee replacements, they usually prefer to do one at a time. Think about this, it's about recovery and seeing how it pans out. IF, it didn't work for any reason you might want to rethink what you do with the other eye. I'm with Jayuk, don't run head first into anything which looks like it will be the answer. It might, but it might not, and you only have one pair of eyes. I remember how I felt at your age, I think it's really hard to deal with this as a teenager and I'm sorry you don't have parents to talk to, do you have any family at all? Are there any trusted adults in your life? Keep talking here, please. There's no harm in taking time to reach a decision.

[jayboi2005]

i see what you are all saying, i still dont know what i will do. i think i will have this done like you say one of my eyes is far worse then the other so ill have the really bad eye done first of all. one thing i wont do is have it done before 25th March which is the London meeting, ill come down there and maybe speak to some of you?! I want to speak to the surgen first of all, want to see what he says the risks are. I want to know from the eye doctor at the hospital here what he thinks the risks are, i want to know from this professor over here at the London Vision clinic thinks the risks are and then i want to know what you guys think from what they tell me. And then i can look it in a better light. LOL thats ironic LOOK in a better light.

[Louise Pembroke]

That sounds like a good plan of action. Ask the professor for any clinical data - papers on this and talk about it with us. You can never have enough information before making a decision.

[jayboi2005]

you are right Louise. I want to ask different people and some people that arent trying to sell me something. That way im not going to get a biast answer. Thanks

[Louise Pembroke]

Exactly! get views from those who are not selling.
The thing with KC is this - whatever we do, whether it's lens, surgery, new procedures, it's not a short term process. As yet, we don't have a short cut to getting normal vision, without lens, and quickly.

[Andrew MacLean]

Jayboi, good call.

andrew

[GarethB]

Jay,

As you say my grafts have done well and it is because the grafts themselves are so good they would rather leave well alone. Without a lens in my right eye I can see the top line whcih is better than many with KC.

I have been told 6/9 is achievable, but probably with correction and if this means a lens I will probably have the same problems regarding the make up of my tears lubricating the eye. It is wet enough, but not lubricated enough for lenses.

For an operation they would rather I was down to seeing finger movement only. Plus many specialists agree along the lines of that US link you posted a couple months back that surgery does not work.

My original grafts were 8mm discs and as the poblem is on the margin, this is where even a partial grafts start to have a high risk of rejection. This too is what worries the specialist when it comes to surgery.

C3R appears to carry the lowest amount of risk at the present time. My wifes familly in Germany are helping find out more for me and work have suggested that if I go for the treatment I should apply for a six month seconment to work in Neuss, Germany. Six hours from Dresden, but I will be in the right country.

[jayuk]

Thats sounds logical in that case! What do Dresden say about the fact you have had a graft?...Would you be going for the Epith removed? or just the treatment without it removed?....I think it would be interesting to see the affects of it on your cornea......

[GarethB]

J

Dresden have been sent a copy of the topgraphical scans, results of eye tests, contact lens prescription and dates of next appointment. So far they are considering the full history, but a medical at Dresden will give the final go/no go decision. Afetr tomorrows appointmnet I will give them another update.

Personally I would rather go with the Epith left untouched, however I will reserve final judgement until after we decide it is a viable treatment and have further discussed the pros and cons of each.

Regards

G