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Post Info TOPIC: Before X-Linking – Jan’s story


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Date: Sun Sep 24 11:43 AM, 2006
RE: Before X-Linking – Jan’s story
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Dear Chris,

I am curious as to what you were told could be the potential long term side effects of x-linking?


I first talked to a Danish eye doctor at the university hospital of AArhus in Denmark about possible long-term effects and he told me that a possible side-effect could come from the UV-light causing early cataract. The Danish doctor himself has already performed crosslinking on other eye patients himself for ½ year, but never on keratoconus patients. He offered me cross-linking, but he wanted evidence for progressing for the next 3-6 months. This I could not wait for.


I then talked to the doctor at the university hospital of Dresden in Germany and asked her what she thinks could be possible long-term and side-effects? She said they have been looking for signs of inflammation, cataract, and endothel cell loss since the treatment of humans and animals since 1998. She didn't know what other possible long-term or side-effects could be.


As you can see, nobody knows what possible long-term effects are. You'll have to wait for another 2-7 years.


I’ll later publish the declaration you as patient have to sign if you want crosslinking done in Dresden, Germany. It tells you more about the treatment and what has been achieved so far. But now it is time to rest my eyes.


Best regards, Jan



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Phase Two

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Date: Sun Sep 24 12:52 PM, 2006
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Jan, Thanks very much again for your thoughts, thet are very interesting...


Action, I think in the advance stages of KC, you still need Contact lens (thats if you don't have Intacs or some other correction like Implantable Lenses)... so scarring can occur due to contact lens wear after X linking.


I was talking to a professor in London and he said that all the trouble faced by Keratoconus p[atients can be avoided by doing X Linking early, at the early stages, as then you need no hard contact lenses or transplants then


Mostly opacness happens in the advanmced stages ...so if we can stop our KC getting that far then that can be avoided.


I think the CCL meetings in Switzerland would be good to see what is discussed... but already X linking has been shown to be benfical... unlike anyother treatment.


Best



-- Edited by QuintriX at 12:58, 2006-09-24

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Date: Sun Sep 24 2:10 PM, 2006
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Dear friends,

Thank you Quintrix and Jan for your interesting answers.

Long-term side effects : Doctors told me that there was no risks for caract, the irradiation for C3R is done at 3mW/cm² and the dose which could damage cataract is 38 mW/cm². So, C3R irradiation is very far from damaging cataract.
Tests have shown that endothelium was protected by riboflavin and stroma but it is required to have a pachymetry of 400 µm minimum ! The thicker the cornea is the better it is.

C3R congress : I hope it will permit to confirm the nearly 100 % rate of success of the procedure and explain if it can happen failures and why.

Best regards.

Bye.

Act.



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Date: Mon Sep 25 4:42 PM, 2006
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Dear Action444,


There is no such thing as a 100% success rate, not even “nearly” - that's even a quantum law. There is always an uncertainty. It wouldn't even surprise me if some of the doctors at the conference will mention that some of their patients showed bad results (I could even be one of them in the future). However, even at a chance of 70% success I would do the treatment anyway. It is a very individual thing when you want to "bet" - some do it at 70%, others do it at 90% and so on... But already now, there are two cases in Dresden where the treatment did not work, so I think we can forget about the nearly 100%. It is of course possible to increase this rate by improving the treatment or finding a new treatment, but before that happens in my lifetime I think death will more likely have a success rate of 100%.  


This is the way Nature plays games with us, I'm afraid.


Best regards, Jan



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Executive

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Date: Mon Sep 25 5:19 PM, 2006
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Hello Jan,


your topic is very interesting, though I join it lately.


The nature of effectiveness of x_linking in early stages and lesser effectiveness in late stages is an intrigue. I think, the little effectiveness in late stages is due to "coagulation" structure of the collagen in corneas. So that covalent links induced by cross-linking simply are not established during the procedure. Or they are established but in a very small quantity, so that they can not resist other internal forces that continue to sqweeze the cornea. In early stages KC corneas are much more regular and covalent links install themselves inbetween the fibres much more effectively. In late stages it simply does not work. So this means that the % thing is a function of the stage...I am not surprised that it does not work in late stages. I think the docs should frame it like this: stage 1 rate of success, stage 2 rate of success, stage 3 rate of success and stage 4 rate of success. So probably it will look like this: 100 - 100 -90-50...Which should be verified....


As for the slight increase in corneal curvature and the following flattening, this phenomenon is linked, in my opinion, to what is called corneal wound healing, which is very active after x_linking. And it takes several monthes.


I very much appreciate your intuitive decision. For me it took a couple of months to decide. However, I understood perfectly well that doing cross-linking I simply swap one uncertainty with another. So I stricly preferred uncertainty after x_linking to the uncertainty without x_linking.


Best ragards,


yarsky.


 



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yarsky


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Date: Mon Sep 25 8:23 PM, 2006
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Dear Jan and Yarsky,

Thank you for your answers,

As you had avised me Jan, I have sent an e-mail to the Dresden (Dr Koller)

This is my e-mail :

"I have read on Internet that your hospital was pioneer for Collagen cross-linking in case of keratoconus.

I had some questions about this technique
- What is the success rate for stabilisation of the keratonic corneas ?
- Can it be failure in stabilisation of the cornea ? and why ?
- Is the treatment more efficient according to the stage and why ?
- What is the time of effect of the process ?"

Here is her answer :

"
Dear Mr

in Dresden we have been doing the cross-linking treatment for 6 years now. The first patients we treated still don´t show any progression of their keratoconus so we can say that the stabilisation should at least last for 6 years. The treatment is effective in almost every stage of keratoconus as long as there is no scar or a very thin cornea: if this is the case then we would suggest a corneal transplantation.

I hope I answered all your questions..



Kind regards



Dr. U. Köller"

So for this doctor from Dresden, the crucial element for efficiency is the presence of scars or not and the thickness of cornea.

At the end of keratoconus (what is generally called stage IV), some opacities begin to appear, scars replace stroma, Descemet and Bowman membranes break. Perhaps, it is only at this moment that the tissue is too weak to be strenghen as it is required to resist keratoconus. The message from Dr Koller let think this.

Dear Yarsky, I have an article that you must have from a french profesor Renard and he says that, sometimes, at stage III, it can be found that collagen fibrils are more interspaced but he adds that it is generally in the posterior stroma. But, C3R acts only on the first 300 µm, so these interspaced fibrils are not crosslinked. Beside, Seiler studies have never said that the strenthening effect was less important in late stages (I read an article they said they had calculated Yound Modulus to asses the strenthening).
I think the new machine ORA (ocular response anayser (www.ocularresponseanalyzer.com) will give us more pieces of information about tihis issue.

See you soon.

Bye.

Act



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Date: Mon Sep 25 8:47 PM, 2006
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Action -->


Thanks for clearing things out!


Yarsky -->


"So I stricly preferred uncertainty after x_linking to the uncertainty without x_linking."


YES!! That is a very clear point. I just used more than 100 lines trying to get to a similar point and you just said it by using 1 line!  However, I would also like to point out that I also considered doing crosslinking as an “action” or “battle”. This idea of battle had a crucial impact on my decision-making.


Best regards, Jan



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