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Post Info TOPIC: My crosslinking experience so far


Senior Member

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Date: Mon Sep 10 11:08 PM, 2007
RE: My crosslinking experience so far
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Hello julia.I have performed collagen cross linking and a limited topography guided PRK flying spot laser treatment.When i was at the institute and discussing with my doctor which are my choices he mentioned that having the x-linking only you just halt-stop-freeze keratoconus.When i told him if i could see better than before by doing only the x-linking and not the PRK he told me that maybe i see a little better than before or maybe i see a little worse.No one can be very sure.No one can predict.The only thing here is that you freeze the mothe**f** keratoconus.So,i decided to undergo the limited PRK 40 microns ablations only in order to see without glasses or contact lenses.When you have above 400 microns you can do x-linking and PRK.I think its the best approach.Plz ask me whatever you want but whoever has above 400 microns should do this treatment.The results are all stable since 2003 but if something occurs you can always redo x-linking.My thought is that Dr Kanellopoulos if he wasnt convinced that this treatment is safe he wouldnt have done it to any patients.If you see this doctor from close, you will know what i am talking about.

All the best,Harrys

P.S Topography guided treatment is removing only 1/3 from a normal laser treatment which is very very little.Also you have cutting edge techonology from Wavelight and tiny spots gentle reshape a part of your cornea.You are normalizing it and then x-linking procedure does the rest,meaning freezing your corneas for years.

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jr


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Date: Tue Sep 11 8:32 AM, 2007
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Hello Yarsky,
I meant the negative experience with RGPs, not the negative outcome of crosslinking. Yes, I know it is too early to judge (3 weeks for now). It's just that I used to see six lines on the eye chart and now I see only one line. 12D of steepening can't be attributed to centralisation and my only hope is that with time it gets better. Yes, I will try to get myself glasses in a month from now and, if not successful, maybe I'll try to do without correction. Now it isn't much of a challenge, I'm only a bit worried about the well-being of my better eye as there's considerably more strain on it.
Yes, I've been to Kyiv and liked it. Where in France are you now? An amazing country that is..

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jr


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Date: Tue Sep 11 8:42 AM, 2007
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Hello Zeus,
I've read about your experience in the other topic. I believe that somtething like what you went through will be a standard treatment for keratoconus in future, but you are very lucky to get the best from it today. Your story is amazing! I wish everyone whose life is hampered by kc could've gone your way without any trouble.
As for me, I'll hope for changes with recovery after x-linking. If I'll get near to what vision I've had before it, I will be very happy not to do anything with my eye at all. If not, I'll try to look into the other options.
All the best,
Julia

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Date: Tue Sep 11 9:59 PM, 2007
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Julia,
12D of steepenning (I mean the difference, say 56D after vs 44D before) is smth I've never heard about before...I do not see how is it possible...Have you talked to your doctor, the one who performed the procedure? What did he say? What is/was your pachimetry? What is the machine you are doing your measurements with, An Orbscan? The fact that you see worse now may be due to the haze, that should go away in a month or two. And one more time, let's wait some more months!
 
PS. France is nice. It was almost not touched (relatively, I mean) by the war. If in Ukraine, today, you have many places where people still dig out unexplosed ww2 missles and bombs (and in Russia too, I believe), here all seems intact since ages...In this respect our countries resemble Germany that was also ruined... 

-- Edited by Yarsky at 22:11, 2007-09-11

-- Edited by Yarsky at 22:13, 2007-09-11

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yarsky
jr


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Date: Tue Sep 11 10:09 PM, 2007
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Yarsky,

Yes, that is 58D of max K as last measured, 46D before crosslinking. SimKs are 50/46 D last measurement, vs 43/41 D before crosslinking. Really strange, as literature says that resulting values, and those fluctuating during recovery, should differ by no more than 2-3D.



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Date: Wed Sep 12 1:48 AM, 2007
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Yes,julia that is really odd with the K-readings.I would advise you to make out a new topography with the PENTACAM device.I think its better and more accurate than orbscan.Anyway,how was your vision before the treatment?UCVA and BSCVA?.. here in Europe we had the ten(10)scale system its like if you have 10/10 is 20/20 in the american.Also,the formation of your cone was oblique(small one off the centre),central?Do you know?Sometimes i think that the cone will do a little shift(change place).i have heard that.If you like, upload here your topographies and we will understand more.One image is 1000words.But,in the first topographies the cornea fools the orbscan.It takes a little bit time to be more accurate and specific a topography.Certainly two months period from the treatment.Also,try to find glasses which is called high index asperic glasses.We have asperic corneas,so we need asperic glasses..


P.S when you reply,you will see above the box attach images to upload your topographies.just find a scanner to put them into the pc.

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Phase Two

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Date: Wed Sep 12 3:03 AM, 2007
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Julia,

Here are three outcomes, one of which is likely to happen:

1) K readings will come down after the intilal rise which is only due to the early recovery which is happening. It's still very much early days with that. I've never read of K reading remaining at the high level during the recovery to stay that way indefinately with full follow up data to go with it.

2) More regularity of the cornea - a regular shaped cornea is easy to correct with glasses by pretty much how ever much to get to driving standards vision.

3) A mixure of both 1) and 2) above.

4) For best corrected vision soft toric lenses may be an option (one which is "regular" to get hold off and hopfully a disposable type may be enough). The trouble is accessibility to them with-out having to "jump through hoops" in certain regions of the world, too much. Certainly I don't think you need to worry too much about having to use RGPs, which you did not like very much (they can be "hard" to wear). Having said that you must find a good optician to discuss any corrective methods, someone who is approachable and willing to think out-side of the box, and will spend the time with you. There is always a way someone will know about how to get you what you want. Over here we say "you get what you pay for". I found that to be true, if you have the money, then anything is possible. (its sad but true... although its not out of anyones reach with a modest income)

Harry's (Zeus)... With Keratoconus I have always believed that if it beginings... it can be ended...

I can imagine that from the great mount Olympus, "Zeus" the God of gods was smiling when you was diagnosed with KC ;) Now it's time to help out more of our brothers and sisters, starting from Greece, and then spreading out-wards!! ;)


-- Edited by QuintriX at 05:41, 2007-09-12

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jr


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Date: Wed Sep 12 2:33 PM, 2007
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Here is what I had on my right eye:

Pachymetry: about 420 microns
UCVA: 6/10 (now 1/10)
BSCVA: same, 6/10.

I had one measurement done with an Orbscan a month before crosslinking (I will attach it). But in the clinic where I regularly go, they have one of these placido-disk based systems and the comparison (before/after) is taken from measurements made by this machine. There are no Pentacam devices around here, unfortunately.

Zeus, what do you mean about the cornea fooling the orbscan in the early stages of recovery? This is very interesting, how can this happen?

I've still got no reply from the doctor who recommended the procedure, I've emailed him about a week ago.

The haze is barely noticeable, and if I pull my skin in the corner of the eye a little, I see very well (This is how I tried to check whether it's the haze or the deformed cornea that hampers my vision).

-- Edited by jr at 14:42, 2007-09-12

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