Crosslinking?

[DJ Smak]

I chatted with someone from the USA that does this procedure and they sent me an information package. I am going to give my doctor the contact information for the doctor in the USA to review and if I am a candidate, i might try and see if i can get it done. I have mxed feelings on this though, just as i do if i might need a transplant, i want to do everything i can before that stage comes, i even considred the Boston Scleral lens at one point. I mean its a big decision to make, to have something doen to your eyes, the most i've had to do so far was get fited for RGP's and glasses so to have an actual procedure done is scary. It just sucks though because I live in Canada and Los Angelas is pretty far away from me and not to mention the costs!! I would talk to my local politician and see if i could get part or all of it covered as most people don't have that kind of money at hand.

I would like to know what others think? Should i wait and see if i can get a good prescription for my lenses, eventhough my last set of RGP's, the right eye only improved slightly and still couldn't see that well out of it. Now with my last fitting for my sclerals, the right eye again was not good and i am unsure if it will improve with my next fitting on Monday. Both eyes are affected and the left is getting worse but i can still see failry well out of it with the Scleral.

I know C3R is basicaly preventative in nature and can slow down progression, and in some cases make vision better.

Just wanted to hear what people had to say before its too late and i need grafts done in both eyes.

[Andrew MacLean]

DJ

C3R is becoming available in the UK, and I know that some of the folk in the forum have had this procedure in Europe (I think that they travelled to germany).

Ths Scottish Support Group heard from a consultant in Glasgow who was about to launch a pilot, subject to the hospital investing in the necessary equipment.

All the best, if you do decide to go ahead, and if you do not, then still all the best

Let us know how you get on.

Andrew

[jayuk]

DJ Smak

I would wait till the Sclerals are refitted or see if the vision can be improved? Also, with C3R, the potential success of it largely depends on the current state of your Corneas. If you have mild/moderate KC, than you may be a candidate for Intacs/C3R....

I think above all, you may want to weight up your current situation....Can you see and thus function adequately?

Hope that Helps

J

[DJ Smak]

I have to have a good talk with my doctor to find out exactly where i stand as far as what my conrneas are like. I can still get by wearing glasses, my vision isn't perfect but i can still drive and read text on my pc if i enlarge it some. My vision is probably good compared to some people on here. I'm just trying to think about the future and to stop it from progressing. My right eye progressed failry quick from being diagnosed in 2000, today, even with my glasses or my old RGP (which was made in 2005), i cannot see, everything is blurry.If i put my face right up to the monitor and close my left eye, i can read somewhat, eventhough the text is hazy, whillst wearing glasses. When i tried my sclerals for the first fiting, the right one popped out, which is odd seeing how big it was, i never expected it to fall out, so im believeing my cornea is rather steep and might not be able to get much improvement in it. I'm going to ask my doctor to explain to me exactly where im at, ask for my files so then i can post some info to let everyone know where im at as well.

If i decide to get this done, and i am cleared and can afford it, i would have to decide which eye i want done, either the left one which seems to be progressng or the right one which has progressed the most. I mean try to save whats left in my semi good eye or stop the worst one from getting any worse?

I will keep everyone posted when i find out some more this monday where i am in my progression. This treatment has peaked my interest alot, it seems pretty ingenius, but as with some, the fact its relatively new is the only downside to it. But when things get bad, ya gotta decide whether or not you are willing to accept it or to try and change it, and if it doesn't work, at least ya tried.

[John Smith]

Generally, the medical profession would tend to want to operate on the worst eye first.

I must admit, that is a policy in which I'm wholly in agreement. Obviously, I will see a greater improvement on my worst eye than I would on an eye that was not so bad.

Psycologically, that is good; and it all helps

[Andrew MacLean]

Actually

WE all have a dominant eye, and I'd have thought that it would make sense to operate on that one first. In my case the dominant eye (right) was also the most coned and scarred.

Andrew

[DJ Smak]

Had my appointment today. My doctor told me that he talked to the company that made my sclerals because when i had my first fitting, the left lens was ok but the right one did not fit good at all. They suggesdted switching the lenses around as they might have been put in the wrong eye. Well when i put the one i had originally in the left eye, it fit pretty good in my right and my vision was better. He said my vision in my right eye with that lens was 20/30 or 20/40, i forget already which he said, he used both numbers though.

He said my vision wont be able to be corrected much past that but i asked him how my eyes were doing. He doesn't see me having to have a graft done anytime soon, in fact he told me they wont even do one unless my corneas become opaque and i cannot see. But i cannot see anyhow unless i have a lenses in. Its pretty hard putting the lenses in when you can't see that well to begin with. Anyhow, basically they are going to send the one lens back to get redone, a twin of the one that fit well in my eye but with a diferent prescription of course.

I told him about crosslinking, I don't think hes heard much about it, which i find odd as i figured since he went to a big conference not too long ago and attends them sometimes, that he would know more about it then i would. He's going to check out the website to Dr Boxer Wachler and let me know what he thinks but he alos said if i wanted tio get it done, as long as its FDA approved then he doesn't see any reason not to. He suggested if i have it done to get it on my right eye as i have the most problems with that one.So my feelings are mixed after this visit, being able to see a bit better out of my worst eye was good but also hearing that it probably wont get much better than that is kind of disheartening.

[Andrew MacLean]

How is your pinhole vision?

Andrew

[DJ Smak]

I don't know, I don't even know how they would test for that. Most I've ever had done was the topography and slit lamp tests with the fluorescein and the magnification to find out what presription I'm at. I appolagize for not knowing what that is. Oh I've also had a test done where you look into this lens on a machine and there is a picture of a hotair balloon and its distance changes and i guess it mesaures something, all i know is last time i had that test, my right eye couldnt even see the balloon and the nurse was like thats weird, this has never happened before, she thought the machine was messing up. I had the little blast of air test done to which messures occular pressure im guessing.

I have a side question related to scleral lenses, what color are they normally? The ones i have been trying on are clear, but my RGP's were a blue tinged sort, made it easier to handle and see them. If the sclerals were blue tinged, would that tinge show up on the scleral of the eyes, making your whites look blueish?

[Andrew MacLean]

They give you a sheet of plastic with a "pinhole" in it. The reading through the pinhold is either the same as, or better than the reading you are getting with the lens.

If it is better, this is taken as a sign that there is more potential correction available.

Just wondered if they had taken a pinhole reading.

Seems not, so it is possible that your optometrist took the view that the best correction had been obtained.

Andrew