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Post Info TOPIC: Crosslinking again... contemplating about it
Anonymous

Date: Wed Jun 29 2:59 AM, 2005
RE: Crosslinking again... contemplating about it
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Hi Yarsky, Some excellent points you have made there....


For me....the fact that the variables used was shown to work on animals (I know its crule how animals get tested sometimes)


...anyway...the variables used on animals (rabbits and pigs i heard so far!) was shown to work...and so was used on humans on a controlled bases...and then the fact that for a good while now anyone wanting to have x-linking done can!!....So you could say that it has been let loose on to the general public!....not in just one country but in many and its spreading!


...all this shows that the variables used worked...and also as shown in the studies for x-linking...


Moving on to another thing which came up before and to which i wanted to add to was the notion that UV causes cateracts


...well from the specialists i have talked to they have told me that there is no proof that UV is the cause of cateracts anyway....and also that cateracts can be treated quite routinely


On another note....the experts who do x-linking indicate that the line to which long term results can be called long term results as a minimum is that the results have to reach the 10 to 15 year mark...


So at the minimum level that would mean for an average person, to say what is reasonable to call long term would be to wait another six and a half years!....and this is the main problem we are faced with at this time in our lifes!


Now if your kc is progressing then it may be worth while to do x-linking than not to....its how you feel what is right for you i guess!


You could wait and do more research...you could just wait and see...or you may have done your research and is dieing to have x-linking done!!


For me....if you can beat progression at the right time...you have beaten kc!!!!!


The fear of progression...the worry about progression and the actual progression it self...is what the main problem is and what kc is...


...so if you can defeat progression...you can say that you have beaten kc!!!!!


You know Valeri put it beutifuly...when he said "X-Linking after Maths"...and he is so right!!!!!!


...as he decided to have X-Linking as the maths from the studies spoke for it self!!!!!!


For me personally...my kc has not progressed for years...it has actually regressed...so i can wait...the only thing I am hoping for is a bit more regession by trying x-linking and if i do get some, I would certainly be more than over the moon about that!


I may even start taking bets as to if i would get more regression:)...as the chances are asbout 6 to 10


...I may even bet that i will not get no more regression as if i don't at least I can take the winnings!!!:)))



-- Edited by QuintriX at 07:56, 2005-06-29

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Date: Wed Jun 29 1:33 PM, 2005
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Yea, you're right with "the long term".


I saw my ophtalmologiste yesterday. Relatively good news: very slight changes, almost nothing has changed. However: the right sees 1 of 20, the left 8 or 9 of 10.  I'd say the left depends on weather, fatigue, temperature, pollution levels, things like that. The corneal widths are like 448 and 462 for the right and left respectingly. The right is classified KC stage 3-4. The left KC 3.


Last year my strategy was to try to minimize efforts, psychological first of all, get more rest, less work, less stress, more zen, good food, vitamines, etc...


Surprisingly (!) he offered me two medicines that are applied for arthrosis and reuhmatic conditions...saynig it would probably help to dump more further progression.


X-linking, he personally was not positive about it. He's an old school. I've got to make a decision...I can live with such a left eye.



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yarsky


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Date: Wed Jun 29 7:34 PM, 2005
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Hallo,


i was informed last autumn that I have ceratoconus. I did always have about -7 or -8 diopter for about 10 years. I have worn always soft contact lenses since I was 18. Now I am 36. About two month ago my doctor did fit me new contact glasses (hard contact glasses rg???). The left eye did he fit very well - which is the bad eye. Actually I do have there about -17 diopter, which progressed estimated in just 4 years. Because 4 years ago I did get new contact lenses which good visus results. But for the right eye, were at the moment I do have good visus with glasses, he did take the same contact lenses parameter. So the right contact lense did not fit. I did always have a bubble under the contact lense - so I couldnīt see with the right eye. Then I put him the contact lenses back. I didn`t want them. Moreover he did give me the contact lenses and told me: you cannot do anything against ceratoconus just one day a transplantation. Not very great. So I read a lot in the Internet. There I found cross-linking. I was wondering why my doctor didn`t tell me about it. I went to the eye clinic Salzburg. There they offered me to do crosslinking.


I think everybody who ist diagnosed with progressing ceratoconus, who is young (and maybe not a too high level on ceratoconus - there are four levels - the fourth level ist the badest one) can do cross-linking.


After I was in Salzburg, i was reading everything I could find about crosslinking then i recognized that crosslinking is still an atempt.


I do have ceratoconus level 1 till 2. Maybe on the left eye a bad 2 or a good 3. I do not know the combination about progressing diopter from -7 to -17 and ceratoconus. Is this normal?


Next week I finally decide what I will do. But at the moment I will do crosslinking for about 99 %. When I will do it - I will inform you like Valeri. (Thanks a lot to Valeri).


The reasons are: I do have progressing ceratoconus (The Topographie did show me on both eyes red zones)


I am young (okay i am already 36)


At the moment I can see with glasses 10 % on the left and on the right eye nearly 100 %. So I hope I can fix my visus with ceratoconus, which would be great to correct at least one eye with glasses to 100 %.


Moreover I do not have really good choices - progressing ceratoconus or the other chance to stop (hopefully) ceratoconus and keep the visus like it is at once. I think the most reason to do crosslinking is progressing ceratoconus. When I had not progressing ceratoconus, I wouldnīt do cross linking, because there are no longterm experiences. (Nobody wants to be a guinea pig).


After crosslinking i will try again new contact lenses - maybe the "soft k" from soflex.


A great information about crosslinking is on the swiss homepage...


http://www.iroc.ch


http://www.iroc.ch/uv.html


http://www.iroc.ch/Downloads/Keratokonus.pdf


Finally I think it is important to become active by yourself. Even doctors donīt know everything.


Evi


 



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Date: Wed Jun 29 10:46 PM, 2005
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Evig, thanks. I see, you hope to save your right eye. I hope to save my left.



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yarsky


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Date: Thu Jun 30 3:48 PM, 2005
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In the context of contemplation about crosslinking I've got some info saying that in crosslinking 70% of the UVA are adsorbed in the anterior layer of the cornea. Some of this light, when adsorbed, is used to induce the new links between the col. fibers. The other 30% percents are guaranteed to be adsorbed before they rich retina or even the cristaline (the lens). Anyway, neither the retina nor the lens are obsereved to be damaged in the result of this irradiation.


This light is adsorbed by everything in the cornea, I think: riboflavin, collagen, cells, whatever...


Has anybody some info on the details of this process? UVA light adsorbtion process across the stroma, I mean...


 



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yarsky
Anonymous

Date: Thu Jun 30 4:00 PM, 2005
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I think also Yarsky that it depends on which option of X-linking you have done as well...check out the topic of the same name to read more...

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Date: Sat Aug 13 3:55 PM, 2005
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My son was diagnosed with Keratoconus a week before his 14th birthday and has virtually no vision in one eye. We decided to go for the cross linking immediately to stop the progression.
We went to Los Angeles, and were told that it would stop the progression but if needed it could be done again.
When we went for a checkup here in Israel, we were told that they are now bringing the C3R treatment here and if our son needs it again we can do it here.

So, yes, people are doing this treatment, and just the fact that they decided to bring this treatment to Israel makes me feel EXTREMELY confident about it. Before, I was just crossing my fingers hoping all the facts were correct and that this wasn't just something that might work.

We will be taking our son for checkups every six months now and if we see any change, we'll do the treatment again.

And just for your information, he underwent the treatment with no discomfort whatsoever and was fine afterwards also. We were told to expect some heaviness in the eyes, and maybe an uncomfortable feeling, but he was bouncing around after the treatment and every effort to keep him lying down in bed, as per the doctor's instructions, was physically impossible. The doctor finally told us on the phone that since he's feeling so good, to let him get up and do whatever he wants.

Good luck!

Dina

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Dina Golan


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Date: Sun Aug 14 11:40 AM, 2005
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Good news Dina!
Thanks for posting! Wish your son a good vision! In LA they are doing without epithelial abrasion, the "soft" way. How's his vision today? What do the topographies, etc. say?

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yarsky
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