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


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Date: Sat Sep 23 8:43 PM, 2006
Before X-Linking – Jan’s story
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I once read a book by my favorite Algerian-French writer Albert Camus who mentioned something about how to deal with any kind of permanent disease. He himself suffered from tuberculoses and had to change his life style because of it. For instance, he gave up playing his favorite sport football.


I don’t think I gave this quote much consideration until August 2006 where I was diagnosed with a progressive eye disease called keratoconus that basically turns your cornea into cones or the pyramids (as I like to say) as you grow older. I suddenly had to learn how to deal with a progressive disease, so the first step for me was simply just to accept it – so I did. However, accepting this disease to progress without any resistance I could not accept!


 


The whole story leading to my diagnosis is a bit of a joke itself so I will just mention it “briefly” here: I am a bit stubborn as a human being and the first sign became very apparent when as a teenager I continuously refused to wear glasses. I simply could not accept that Nature gave me bad vision. Today I’ve more accepted the idea of glasses, but I still refuse to wear contact lenses since I believe they do nothing but harm to your cornea.


 


This stubbornness of mine continued till I finished my undergraduate university studies with some difficulty. From then on things went downhill and I no longer could continue with my masters and also I began to notice my vision getting worse and fluctuating. More and more everyday life problems were just accumulating and I started to get a severe depression.


 


I began to receive therapy against depression so I could start working with some of my problems. It was time to solve my worst problem – bad eyes! So, I went to several optician companies, driving a couple of them mad I think, until I finally found one that corrected my vision almost perfectly. I ordered a nice pair of glasses just to try at home before buying them, but the optician company never dispatched them even though I contacted them several times. I decided to try a different branch in the same optician company somewhere else in town and hope for a better treatment. But after a short examination they said they were not able to correct my vision since I have “weird eyes” and I should consult an eye doctor. I refused and said that there was a guy in a different branch in the same company who was able to correct my vision almost perfectly. So they called him and he said my journals were gone.


 


I consulted a private eye doctor as they told me to do. I don’t think I have to describe how a depressed guy like me felt after I received my very first diagnosis of keratoconus. It did not get any better as my eye doctor showed an attitude of this-disease-is-no-big-deal and said “your keratoconus might not get worse, and if it does we can start talking about corneal transplant in 30 years”. I asked him to refer me to a state eye specialist immediately, but he refused and said they only treat worst cases there. Instead he prescribed hard contact lenses at the very same optician company that previously lost all my journals. This same optician company examined my eyes more thoroughly this time and concluded it probably wouldn’t help with hard contact lenses because I was seeing too well.



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Date: Sat Sep 23 10:52 PM, 2006
Before X-Linking 2 – Jan’s story
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(Continued…)


 


There is a rational explanation and an irrational explanation (which unfortunately is more disturbing) for why I did crosslinking just 1 month after I got my diagnosis.


 


Rational explanation: Imagine you are working for the secret police and you know a group of people that are terrorists. Also, you are completely confident about what their target is. You are not sure when and if they are acting within a given timeframe. However, you have evidence that indicates that there is a chance of attack within this given timeframe. You can lead a possible defense operation with a plan that has some chance of working. You don’t know if this plan will create more problems later on. How and when should you act? Should you act at all?


 


In my case: I have evidence of keratoconus, I am 22 years old, and I have had troubles with my vision since I was a teenager and I have noticed my vision is getting worse (but I have no topographical evidence that spans a period of 3-6 months, only my own judgment from what I can see through my eyes). The timeframe of Keratoconus is the following: It is most likely to “attack” (progress) when you are a teenager and when you are somewhere in you twenties.


As you can see there is a great chance of attack within my timeframe.


The question is not whether crosslinking (your defense plan) is working or not because in both cases you are just at the same problem as before (you just loose time, money etc. which in my case can never be an issue because I consider my health more important). The important question is what happens if you plan creates more problems later on? In my case I can not wait for long-term results because I then increase the chance of my eyes worsening and thus it will make no sense to do crosslinking anymore (it has to be done on an early stage). The doctors in Dresden mentioned that those people treated since 1998 did not show any sign of progression (in Denmark results are considered long-term when they reach 10-15 years. In my case I should wait another 2-7 years is I wanted secure data). But they also mentioned that there have been two persons under 18 where crosslinking did not help. Both cases already had a very weak cornea and showed fast progression of keratoconus before treatment.


 


Irrational explanation: After I did rational reasoning (see above) I decided to listen to that part of the brain (you can call it you intuition, soul, or whatever you like) that goes through all that stuff one goes through before making an important decision that can have positive as well as negative consequences. It is a very personal and distinct feeling I can’t describe with words. I decided to go to Dresden and stayed there from September 17-22 2006 alone…


 


Jan



-- Edited by Jan84 at 22:57, 2006-09-23

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Date: Sat Sep 23 11:20 PM, 2006
RE: Before X-Linking – Jan’s story
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Hello,

Your story is very interesting.

You said "The doctors in Dresden mentioned that those people treated since 1998 did not show any sign of progression (in Denmark results are considered long-term when they reach 10-15 years. In my case I should wait another 2-7 years is I wanted secure data). But they also mentioned that there have been two persons under 18 where crosslinking did not help. Both cases already had a very weak cornea and showed fast progression of keratoconus before treatment."

Could you give us more pieces of information about these cases which were not stopped by cross-linking ? The last study from Dresden (August 2006) which is mentioned on pubmed.gov did not mention some cases of people for whom cross-linking had not worked.

By advance, thank you very much.

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Date: Sun Sep 24 9:02 AM, 2006
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Dear Action444,


Thanks for your reply!


I was told this piece of information by Dr. Ulrike Köller. She told me that these were very recent cases and both had advanced cases of keratoconus and had scars. But she also told me that the chances of stopping the progression of keratoconus by crosslinking are greater for people with early stage keratoconus.


You can always contact the clinic (http://augen.uniklinikum-dresden.de/seite.asp?ID=12) for more information.


Best regards, Jan



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Phase Two

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Date: Sun Sep 24 9:14 AM, 2006
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Jan... Thank you very much for your contribution with your wonderful posts...


At your age you know a lot!!! You have covered many things we have uncovered...


They say that KC exists one in 2000 in the population... that is wrong!... as its only when its too late that someone gets referred to a Hospital where their KC is recored, thats when they have too much of a cone in their eyes to be corrected by glasses!... so there is lots and lots of people who wear glasses and they don't know why... or even their optician don't know why as well... These people are forgotten about... but these people are the ones that can be helped the most!!


If you do go to a very very good optician you can be corrected with glasses that can help in the early stages... some opticans will not take the time and effort needed... i have noticed that myself... and push you in to contacts


I think with crosslinking it will take six months to strenghten the cornea after the treatment... during this time your KC can progress until the the corsslinking treatment starts working... so the sooner you do crosslinking... the better!


Jan did you do one eye or two eyes?


Thanks again!



-- Edited by QuintriX at 01:03, 2006-10-04

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Date: Sun Sep 24 10:50 AM, 2006
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Hi Jan,

I really like the analogy of the secret police you used to illustrate your rational for having x-linking done.

I will be having it done shortly myself, I had Intacs put in two months ago and should be having x-linking done in the first eye in about a month.

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


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Date: Sun Sep 24 11:21 AM, 2006
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Dear QuintriX,


Thanks for your reply!


They say that KC exists one in 2000 in the population... that is wrong!...


Actually, it is quite funny you mention it. I was having a conversation during my operation with the guy who was frying my eyes with UV-light (pretty weird..huh?! and he told me in fact that new technology reveals keratoconus at a much earlier stage. I didn't know what new technology he was refferring to (wavefront?), but the point was that in fact now more cases of keratoconus are detected. He said 1/600 have keratoconus rather than 1/2000.



Jan did you do one eye or two eyes?


I did both eyes. I'll describe this in more detail. Right now my eyes need to rest. It is pretty though looking at a computer screen at the moment.


Thanks again!


You're welcome!


Best regards, Jan



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Date: Sun Sep 24 11:40 AM, 2006
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Dear Yan, Dear Quintrix,

I think the next corneal cross-linking congress will be very useful to have more pieces of information about C3R : effect duration, efficiency according to the stage, required time to strengthen the cornea...

It would be interesting to know why C3R could more efficient in early stages : is it because of the position of the collagen fibrils ? is it because of scars ? in this case, whatever the power of your cornea, the crucial element is the presence of scarring or not...

Anyway, I think the presence of central corneal scarring makes C3R is not very useful because this kind of opacification generally require a graft. However, I was told peripheral corneal scarring could not play a role in a C3R because only the center of the cornea was treated.

Quintrix, your point of view that C3R need some months to be perfectly efficient agrees with a post from Dr Wittig who had said that progressions of keratoconus had been seen after C3R which had been followed by regreession (it was the case in the brazilian study).

Best regards.

Act.







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