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TOPIC: bluesfan's x-linking


Member

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Posts: 20
Date: Sun Oct 7 4:52 AM, 2007
bluesfan's x-linking
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Hi there lad from leeds and thanks for the message. I am not exactly a fan of either but I do watch and follow the English Soccer league however! smile.gif

I am nort sure how much of the xlinking stuff on here you have read so far, but I do recall that folks likes Valeri, Zeus, Yarsky and Helen have disuccsed their own x-linking outcomes on the forums here, but I do agree that it would be nice to hear more. Also its good to read some of the doctors' statements on the outcomes of cases which they xlinked. Granted some doctors have been more forthcoming on this than others on what the results were like in their own practices, but I think those who are more forthcoming are really sharing more knwoledge with us (and are thus more helpful)than those who are more on the more achingly conservative side.

and whie I am at it I might as well give an upate: about 3 days ago I started getting the "foreign object feeling" in my x-linked eye. Thiss has subsided the follwoing day and since then. Otherwise the hazy vision is still there. Doctor is not saying much other than that I wil be tapered off the tobradex drops, and that the demaraction line is now visible, otherwise no other details were shared :-S. 2 exams were performed: ORA (optical respeonse analyzer) and hystersis. No word yet on the xlinking of the other eye. Will see doc again on Wedsnesday. (sigh)

-- Edited by bluesfan at 05:05, 2007-10-07

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Member

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Date: Fri Oct 12 5:18 AM, 2007
RE: bluesfan's x-linking - confusion between doctors opinions
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hello everyone I guess its time for an updatë. I hope you guys still read this as it may be a bit long!

today marks week 3 post xlinking my worst, left eyeĻ:

Saw doc yesterday and he confirmed that the demaracation line can be seen with slit lamp and that the epithelieum has fully healed. Doc advised to stop using tobradex drops and BSS and presribed steroid drops instead. A refraction and topography were done, and of course my vision is still very blurry in the left eye. As discussed on another thread, this is most likely related to the abscence of keratocytes, as new ones should be currently populating down in the limbus (a situation called "aptosis") and hopefully blurriness should subside with time as these new keratocytes rise to the upper layers of the cornea and as the consequent corneal remodelling takes place. As for topography,I was told there has been a slight flattening of about 2 K, but of course as you may have all have heard, these things are expected to vary during the recovery period during which K values (among other things) arenīt definitive. Also doc shared a copy of my post-op corneal confocal micorscopy which shows abscence of keratocytes (save for a few "dead" ones), which according to him is also a sign the that x-linking is taking effect. Furthermore, the orbscan topos also showed significantly lower pachymetry values in my x-linked eye, which the doctor said are false readings due to the x-linking effect.

I will be sharing copies of the above with you as soon as I get them scanned.

Finally and after many questions by me about "the future" the doctor gave some conservative answers to that, stating that he would consider ferrara rings (as opposed to INTACS) for my left eye. When I asked him again about the possibility of combination treatment of PRK with xlinking, his answer was that he prefers to steer clear from that route as he feels its too early yet to adopt this kind of treatment for KC, especially in his own practice. However he seemed very updated and aware of that treatment modality although he cited his own concerns about ablating what may be an already thin cornea even though it wouls still be a small amount of ablation and even though it would be topogrpahy guided.

Regarding x-linking of my right eye: Doc also re-iterated what he said before about not thinking of x-linking it, at least for now. He feels that unless progression is seen as early as a few months from now, then it is probably uncessary to x-link that eye at all in his opinion, especially since steepness is barely noticeable in topogrpahy and since I (supposedly) have 6/6 BSCVA using my exsiting glasses (this came as a surprise to me as all my previous refractions showed that with glasses my vision was still not 6/6). He also added that even if x'linking is to be done in that eye he would still avoid doing it right now due to the temporary bluriness side effect, as it would affect my lifestyle. Personally, I can appreciate that (if I had the bluriness I have now in xlinked eye in both eyes, then I couldnt imagine how my life could be and I certainly wouldnīt be typing this!!), on the other hand, I canīt deny I feel a bit cocnerned as well about holding off the xlinking of the right eye.

So this is the official story for now.

On another level, I want to share with you that I also went in for a consualtation with a doctor who is specialsit in and is pro combination treatment of PRK with xlinking for qualifying KC cases, just to get a 2nd opinion. A full set of the usual exams was done, including a corneal microscopy. the feedback I got, especially based on the microscopy, was that the xlinking that I got done in my left eye, may not have been done well enough at best. :-S In his opinion this is based on the microscopy images not showing a granular texture and thin hairlike fibres or lamellae which usually appear in the images from xlinked corneas and are suppoedly indicative of x-links forming in the treated cornea. When asked about reasons for this, I was told it may be due to the composition of the riboflavin drops used in my case. I was also told that the current blurriness may unlikley subside, since in his experience his x-linking patients can see well enough in around 10 days. He indicated that I am a good candidate for the combination PRK with xlinking treatment and that it could be done for both eyes. This would mean that my left eye woud have to be re-cross linked and he also indicated that that eye would still most likely require correction with spectacles or RGPs at worst.

So .... I am not quite sure what t make out of all of this, it is terribly confusing and I am trying not sweat it out. In the meantime I am staying put. Any thoughts? Comments?

-- Edited by bluesfan at 05:30, 2007-10-12

-- Edited by bluesfan at 05:32, 2007-10-12

-- Edited by bluesfan at 05:39, 2007-10-12

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jr


Veteran Member

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Posts: 33
Date: Fri Oct 12 11:45 AM, 2007
bluesfan's x-linking
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Thanks for this update, bluesfan! Very interesting.
I'd doubt what the second doctor said to you, because in all available info and presentations we may see that the drop of K values happens gradually during 6 months after x-linking.. and experience of people from this board, as far as I remember, confirms this. Blurriness after 3 weeks is surely normal. Being in the same situation as you (though in my case, it's more than 7 weeks), I can understand your confusion. I would stay away from cross-linking and PRK, you can get outstanding results but side-effects can be serious. There are very few doctors who have many experience in this very promising, but not yet much studied way of treatment.

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Member

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Date: Sat Oct 20 9:52 PM, 2007
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hello!

it is strange for me to hear about a crosslinking not working, could I ask you for the name of your second doctor?

If you keep trusting your first doctor I suppose you can check the topographies .for signs of progression

I think it's normal for the blur to stay 3 weeks but it should be getting better slowly.

About the next operation I think that the RPG is better. I'm not 100% sure about this of course but it is my course of action too :)  Itīs true that the RPG compromises your cornea removing around 30-40 microns but nevertheless a crosslinked cornea should be able to stand this. Although honestly it's a little more risky specially because the INTACS are removable.

If you are really confused you may want to pay a visit to Dr. Seiler in Zurich.


best regards.

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Phase Two

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Date: Mon Oct 22 3:14 AM, 2007
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Hello Joseph nice to hear from you again!

Sometimes what is meant to be wrote and what is read of those words can throw what is actually being said. This is why I am posting this message. It is not the case of crosslinking not working... not at all... its just the depth at which crosslinking has occured is being questioned, it is good the cornea is crosslinked I feel, but I also think may be sourcing another opinion could be an option if bluesfan wishes to lay this to rest (an odd number ie three opinions may throw more light on the subject, or the opinions already sort may be enough for him, its a personal choice). In any case I don't think there is too much to worry about. Personally I would advice anyone to get treatment from a Dr/Clinic you are fully comfortable with in all areas, and so the natural worry of treatment to the eye is as worry free as possible. Is there much to worry about at the moment... not that I can see... however only Bluesfan knows how he would like this saga of two opposing views to end, if indeed it has to at all.

All the very best.

-- Edited by QuintriX at 03:18, 2007-10-22

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Member

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Posts: 19
Date: Tue Oct 23 11:56 PM, 2007
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Hello quintrix, I read the forums from time to time, my kc is highly active and I prefer not to get obsessed about it.

By the way I would be interested in hearing your thoughts about the possibility of a topography-guided PRK after CCL versus the usual Intacs implant. Not accounting the risks and the reversevility of the intacs, I think the PRK would be more accurate but not sure about it.

An article about custom PRK btw

http://www.crstodayeurope.com/Html%20pages/0507/rs_stojanovic.html


This thing about the bad composition of the drops seems very strange of me. I have heard little but everything good about Dr. Alvarez de Toledo. The problem is that I suspect who the doctor is and he is supposed to be even better... That's why I recommend to visit Dr. Seiler or even Dr Kohlaas, they are second to none.

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Phase Two

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Posts: 484
Date: Wed Oct 24 2:43 AM, 2007
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Joseph,

On a side point first, please read here about posting links

I think there is no one solution for everyone. As it depends on so many things, we must all find our own way to some kind of normality with which we are happy with, after being aware of everything, all the avenues we can take (some have more options than others), as much as possible, its what everyone and anyone deserves.

PRK with X linking is one such solution for the right person, the results will be presented at the Third X Linking Congress.

On the point of the Demarcation line... here it is:

9ljzo2.jpg


-- Edited by QuintriX at 22:52, 2007-10-24

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Ophthalmologist

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Posts: 18
Date: Fri Oct 26 7:03 PM, 2007
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Hi everybody:

Just to give some information about the drops of riboflavin that were used in bluesfan cross-linking. Its name is Ricrolin , manufactured in Italy, with the aproval of CE ( they have the CE mark) and the cross-linking device was the CBM cross-linking device used by Prof Caporossi in Siena University in so many patients.

Itīs easy to say that maybe the drops were not good.... etc without knowing anything of what was done in the procedure. Itīs easy to say that "maybe, perhaps, but you need to be operated by me again". Can you imagine a second cross-linking a few weeks after the initial one? Iīll wait until six months to decide to re-cross-link a cornea.

I, like you, Joseph, could imagine who is the second doctor bluesfan went for a second opinion.... Like everybody that have read my posts in the forum, you may know that i have i son with keratoconus and i like to treat my patients like if they were my own son. Thatīs why my conservative aproach in your case, bluesfan, and thatīs way i will not recommend you PRK yet, until evidence is seen around the world.

Cross-linking seems to work, and thatīs why we start to use it in our instituition. But PRK after cross-linking, who knows yet? Maybe in two or three years will be more experience, but you are patients, not rabbits in a lab.

Cross-linking doesnīt have the wow effect as for example LASIK. Your vision decrases for a period of time and results we expect is only halting the progression of KC. Patients want to see 20/20 without spectacles, and thatīs our goal, but we have to be realistic in our results today. Tomorrow will be better.

Juanito

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Juan
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