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Associazione Malati di Cheratocono and mini ARK 
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Iscritto il: sabato 25 giugno 2005, 18:21
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Messaggio Associazione Malati di Cheratocono and mini ARK
Hi Scaistar,
I have been away from the internet for a long time and have not been able to follow all that has been happening on your site. But I did get my wife to translate some of the messages from the link you sent me about the mini ARK discussions that you have been having.

It seems that not a lot has changed and that there is still an unnessesary amount of tension and anger generated by this discussion.

I have personally seen Mini ARK debated on various forums for over three years now... the arguements are always the same and the outcome never changes. People attack the clinic for not having peer reviewed data, they have attacked the patients who have had ARK as being 'controlled' by the clinic that performed the operation... etc, etc.

Everyone is entitled to their opinion and some of the arguements against ARK may be valid but what I have seen is a big lack of what these forums are truelly supposed to provide... SUPPORT.

My way of thinking is that it does not matter what form of procedure you choose to treat your keratoconus, but it does matter that you have been totally informed of ALL the options available and that people do have a place where they can go and seek further advice and support.

Mini ARK is unique in that it does not have the massive publicity that other treatments enjoy. Transplant doctors do not have to appear on internet forums to tell people about their operations because they dont need to... but to a certain extent Prof Lombardi does have to... how else will anybody learn about his treatment if he does not? As you have seen this can have both a positive and negative effect... ie. people want to hear what he has to say on certain topics but then others condeem him as doing no more than 'selling' his techniques.

Its a no win situation... but I believe its vital we hear what mini ARK is all about so we can all make up our own minds as to how valid it actually is.

Also as you know ARK- mini ARK was not accepted by the medical establishment for many reasons (we could debate these for many years but what would we achieve :))

I dont think it is right to dismiss ANY treatment without fully investigating its worth (I challenge you to tell me how many medical experts have travelled to the Lombardi clinic to tell us exactly what it is about mini ARK that is so bad?... I'll tell you 'zero!!!!!' How can we be told that a treatment is bad yet no one has even bothered to investigate it??).

The fact is that Prof. Lombardi has a treatment that has worked, I know this is fact because it has worked for me. You and many others have not had this treatment so how can you ever see through my eyes... the same as I cannot see the world through the eyes of a transpalnt patient.

So am I the only one? Are there ten others like me? A hundred? More? I dont know and I can't speak for other patients but I do know that I found a treatment that worked at a time when everyone was telling me there was no such treatment.

I also know that the more I have researched mini ARK the more I've become reassured. There has been no long line of patients with ruined vision... true there has been some who have been unhappy with their outcome but then this is true of any medical treatment... mini ARK has never been sold as a 'cure'.

Some now say that there is no interest anymore in mini ARK because we now have cross-linking, I personally dont think this is the case. I believe that as patients we want a full table of options to consider when dealing with keratoconus... cross-linking may work in certain instances but mini ARK may be better in others... PK may be an only option for certain advanced cases of KC but then again DALK may be an alternative option. There is even cases now where treatments are combined to produce the best result... ie: cross-linking used in conjunction with Intacs. I dont agree with some of these options but I fully embrace the fact that I have them as a choice.

When I was diagnosed I was told that my only options were RGP's or graft... and now only a few years latter we have so much more.

Scaistar, some time ago you were talking about taking a bus full of unhappy mini ARK patients to Sienna... Like I said I havnt had chance to read all the posts here... did you ever go to Sienna to see the specialists you spoke of? You were going to get them to examine the mini ARK patients... what were their findings?

Did you know that a clinic in London is now going to be using mini ARK to treat keratoconus? I'm not sure if this is the same as the treatment Prof. Lombardi developed or another version, but it is interesting to see that not all the medical world has dismissed incisional corneal treatments as being outdated. Also I'm sure you know that another clinic in Italy still uses variations of RK to treat Keratoconus.

As you know I have been trying to set up a forum were people can speak openly about all aspects of keratoconus. The idea was to provide a place where italian patients could have their questions translated (gratis) into english and vice versa. I think that we lose a lot of information because of the language barrier... but I have been very busy lately and havnt been able to develop the new forum as much as I would have liked.

But I do want to develop a section of the forum that focuses on supporting mini ARK patients... a place were they can share their medical data and openly discuss their progress. I hope that this will provide the mini AREK community with a place to communicate.
If anyone is interested then please visit:

Scaistar, feel free to remove this link if you wish. I personally dont see these forums as being competition, I think its best that each one has something a little different to offer.


I'm sorry that I cannot speak to you in italian but my wife is busy at the moment and cannot translate :roll: :roll: :roll: :roll:

martedì 24 luglio 2007, 18:23
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