Mini A.R.K.

[harrison]

Thank you Andrew - I still will persue and see what it is all about - the other option I am looking at is cross linking. I guess I just have to wonder why the ARC is not popular. Is it because it is also not the readily available? I have only found the two Doctor's in Italy of perform it. Which of course would make it limiting in it self. What is your experience with any of the treatments?

thanks so much
Brigitte

[Andrew MacLean]

Brigitte

I guess that on this forum we have people who have had almost every treatment under the sun. We also hve people who have experienced almost every set back or side effect that can be anticipated.

Andrew

[Hari Navarro]

Hi Brigitte,

As you can see from the sparse contributions to this string ARK and mini-ARK are not too common as treatments for keratoconus.

There was a time when this was very much not the case... There was a lot of debate (mostly very heated) but very little forward momentum. I now (with the benefit of a few years of hindsight) believe that Mini ARK and the work at the Lombardi clinic was given very much an unfair ride.

At the time when I first discovered that I had Keratoconus I was naive enough to believe that ANY ray of light (in the treatment of what was then an 'incurable' disease) would be given full and comprehensive attention. In fact the opposite proved true with many disregarding ARKs worth without so much as ever contacting the clinic involved.

I had the Mini ARK procedure myself and have since for all intents and purposes been cured (a word I have never until now used to describe my results) of this most debilitating disease. Since walking out of that clinic in Rome I have never worn contacts, glasses or have had to have any further form of eye treatment. Initially I had problems driving at night but even now this is no longer a concern.

My firm belief is that the level of 'surgical' precision required to perfect this technique is what swayed many a doctors from even contemplating its use. It is a skill that could not be 'programmed' into a computer to dispense treatment, it was one that had to be studied.

I am only one of his many patients but for me Prof. Lombardi's treatment succeeded beyond my wildest expectations. I have not been in contact with him or his clinic for some time now, but I know that he is continuously evolving his technique and has embraced many new and promising breakthroughs. I wish you the best of luck in your search for a solution, with my only advise being to leave NO stone unturned.
Regards,
Hari Navarro

[harker]

Hi Hari,

I'm genuinely thrilled for you that your experience with Mini ARK was so successful. I'm not above saying that I envy your fully restored sight.

However, I think you're being almost willfully ignorant about how science works. You talk as if the patients behind the research papers you dismiss in favour of anecdotal evidence are somehow less real than those you find yourself. The major difference between a post on a forum and a research paper is scale. A research paper collates evidence from multiple case studies to form general conclusions. The conclusions they come to are rarely as exciting as reading one person's fantastic experience of a treatment, but they paint a more accurate, fuller picture.

To put another way. I completely believe that Mini ARK restored your sight. However, if you are, in fact, one of the lucky 50%, that wouldn't make it something i'd recommend exploring. Unless you like a gamble.

(Note, I'm not trying to get in the specifics of how safe Mini ARK in the above comment. I don't, in all honesty, know that much about it. It was your comment about preferring anecdotal evidence that, frankly, had me worried).

[Hari Navarro]

Hi Harker,

However, I think you're being almost willfully ignorant about how science works. You talk as if the patients behind the research papers you dismiss in favour of anecdotal evidence are somehow less real than those you find yourself.

I freely admit to being 'ignorant about how science works' though I would hesitate to say willfully. My point was that the professional medical nonchalance that I experienced toward mini ARK surprised and angered me. I defer to those educated in medicine whenever I seek treatment... in this case I was simply told that ARK was detrimental and archaic (statements made without even the luxury of being anecdotal). I am not slamming the profession (I respect many within it) but I did expect more.

I have never dismissed those patients who appear in research trails and papers, I applaud them. All I would have liked (call it biased if you wish) is that mini ARK was shown the same attention. Of course all new treatments cannot be given access to full assessment protocols (due both to time and money), but ARK is not the new kid on the block. It has many, many years of treatment history (admittedly at the same clinic in which it was created, but thats another story).

If it warrants such 'final' dismissal then surely it warrants a just as exacting statement as to why. I wish for exactly what you suggest Harker: ...a more accurate, fuller picture, one provided by research papers drawn from multiple case studies. But where is it? Where is even the official debunk of the procedure? (one again drawn from multiple case study review).

It was your comment about preferring anecdotal evidence that, frankly, had me worried.

I do not prefer anecdotal evidence (though I do believe that 'hearing' the voices of those afflicted with Keratoconus is a something that can get drowned in the convolution of science). Its a balancing act... both are important, yet in mini ARKs case and in the wake of professional disinterest sometimes the patients respective testimonies are all that are on offer. I believe this is far from ideal and hopefully one day it will change.

Regards,
Hari

[liam82]

I have shot the lombardi clinic an email aswell.

Whilst KC has wrought a complete change to my life, ive been very lucky to have a girlfriend who helped me sort cross linking, and handily her brother lives in italy not too far away from the lombardi clinic and im going over to visit soon anyway.

So a consultation could be very feasible and every step along my KC journey seems to have had an element of luck involved.

I dont want to come accross as a impatient, though I am, but id much rather be proactive with KC and examine every possible angle- rather than just accepting a life of contact lens wear.

I love this forum