Dear Scaistar,
This is exactly the type of repetitive, angry discussion I was attempting to avoid by setting up the Mini Ark database in the first place. Those who know anything of Mini Arks past will know that all of these topics have already been argued to death on a number of different forums.
But if we must address them again here is my standpoint:
I guess you are referring to me when you make your opening statement… it would be easier if you just refer to me by name.
The events which you speak of concern the publication on the German forum of a letter you sent to one of its administrators (It is now clear that your words were never intended to be made public but they have become common knowledge none the less).
You spoke of finding a ‘hook’ in the German forum and then proceeded to denigrate Mini Ark and prof. Lombardi… of course this is entirely your right as the letter was never supposed to be seen. But you spoke of very definitive negative conclusions and as we have seen these have now found their way into our mainstream forums.
This event was closely followed by the publication of parody Mini Ark images on the French forum… I know that you have no responsibility for what is posted on foreign forums but your support for this move was overtly obvious. I wonder how quick you would find the humor if I posted the same sort of images on your forum but used contact lenses as a base for the joke?
You see it is not Mini Ark or Prof. Lombardi that are solely effected by this sort of action but more so his patients. We have worked long and hard to find a way out of the KC jungle and whether you support the concept or not we still deserve respect and support.
I do not, as you have suggested, accept responsibility for the patients on my site… I have gone to great lengths to try and offer only information… I do not presume to think for anyone.
My choice to open my site was done for purely personal reasons… I just thought it would be a positive move to collect all the information together in one place so as it could be debated over and then ultimately accepted or rejected. I have said this time and time again… but obviously not loud enough!!!
Again, I agree that at this moment in time much of the sites contents mirror that of prof. Lombardi’s… this is a natural progression as the majority of information I have was authored my him.
As has been continually stated this operation has only two main supporters… the data will obviously been infused with the opinions of these doctors.
Again this is the purpose of the database so that in the future it might grow to encompass a much broader spectrum of views.
You have obviously visited my site… but unfortunately it seems this was some time ago as the details that you point out where removed some time ago.
I agreed with you that my personal views were not appropriate for the homepage as this is the first thing people see and my words may have influenced the way they viewed the site as a whole.
I still stand by every word I wrote… my contention is again a personal one. I was lied to and mislead from the beginning of my keratoconus journey… both intentionally and also through ignorance of the facts.
I have the utmost respect for those doctors and researchers who roll up there sleeves and address the problems we have head on. I have met and corresponded with many that I would place in this category. But I have also had to contend with the opposite and I see no reason why I should extend my blind faith to someone just because he wears a white coat and has spent a great amount of time at medical school.
In my opinion respect is earned, it is not a free gift that comes with a medical license.
My family has been involved with medicine all of my life… so my perspective is one that stretches outside of the world of keratoconus.
You say that my site represents a ‘… serious danger’ to the average KC sufferer that is unlucky enough to stumble onto it (Thanks again for your supportive words).
This comment has me scratching my head… the information contained in the site is NOT mine it is freely available to anyone who cares to take the time to track it down. All I have down is eliminate the need to search for hours on the internet.
I have made numerous statements that the information is not to be considered medical advice and I have advised viewers to contact their own medical professionals to discuss the data.
Some of the data is indeed old, the fact that you believe some of it to be ‘… straight false.’ is totally your opinion and as stated you are more than entitled to it.
In exactly the same way you are entitled to voice your opinions regarding corneal graft and the use of rigid hard lenses... many of these contentions I find ' straight False'.
The database is a BEGINNING of the translated information that I have collected… it is intended to be added to and revised. Already I have made a number of changes to the information I originally posted as new details have come to light.
For example I posted information regarding a new incisional treatment for glaucoma in England. At first I posted it because it mentioned that Keratoconus was also treated with this procedure… upon further inquiry I have been informed that the attending surgeons now believe it to be detrimental to an already weak keratoconic cornea… a fact that I have ALSO posted. I have just translated and posted a negative review from the Swiss medical establishement (Yes it is a few years old but I included it non the less).
I’m afraid that you have not read any of my previous posts for if you had you would know that I am not a doctor and yet here I see question after question that I am more than under qualified to answer.
Of course I had to rationalize these topics before I made my decision to have Mini Ark but my methods of reasoning and yours I’m sure will be very different. Mine where based on speaking to ex patients and questioning doctors… it wasn’t so much the replies that I got but rather the attitude and lack of substantial data to back their passionate rejection of this technique that eventually drew me to consider it.
So I will answer your questions as best I can:
1) I made the statement that ….’the information is not intended to sell the technique’ because that is truthfully my intention.
Now that it is online I have some people telling me that it is ‘stupid’ and ‘derivative’…. I’m not sure exactly what it is that people wanted me to include in a database of mini ark articles and information. Did you want ME to write these articles? Did you want me to leave a space wherever the name Lombardi or Abbondanza was supposed to appear? At no point do I suppose to tell anyone to undergo Mini Ark… I just present the same information that I had at my disposal when I was looking for and alternative option.
Prof. Lombardi has never at anytime contacted me to change or post anything on the site. Although I will surely ask him to provide updated data in the future.
I built the site without his knowledge and out of respect for his work I contacted him the day before it went online… he said it was entirely my project and I could continue as I see fit.
I also contacted Dr. Abbondanza at this time to explain why it was that the site had such a definite Lombardi influence. But as I say, as it grows and more data is collected it can expand to encompass all that have been operated with the technique.
I paid for the domain name and built the site myself... it has been a long hard task as I am not a website designer (As is obvious) But it is one that I felt I needed to complete. It is far from perfect but with the support I have recieved from a few of my KC friends (Some of which totally disagree with the concept of ARK) I hope that it will evolve into something worthwhile.
2) Again the comment you refer to has been gone from my site for some time now… but again I stand by it. I agree, It was not appropriate for the homepage.
The notion that incisional surgery is not counterproductive is of course a personal opinion… you are right I am not a doctor and I apologize for stating my personal belief (Although if I am to be asked to not quote prof. Lombardi then it may be my only option… I could of course quote other doctors, as you have, but then who is it that judges them..?)
I am happy that you have at your disposal the ‘Real facts’ …. And your list of doctors is indeed impressive. But it is a little short… I have many more doctors whom I have contacted that say the exact same thing. Everywhere you look on the internet you will find example after example of doctors telling us a big NO to refractive surgery regards keratoconus. I’m not sure why you published these as this is a point that has never been in contention.
But it is of interest to see you mention Prof. Merlin and his statement:
(Prof. Umberto Merlin): ".. I do not perform since many years anymore the radial cheratotomies in the cheratocono because they cause a further weakening to an already weak cornea...".
I believe that prof. Merlin is one of the few doctors to have actually tried mini ark… perhaps you should ask him where it was he studied this technique before he thought it safe to use on his own patients? Surely no matter how great the surgeon a detailed course of training would have been undertaken?
(Prof. Umberto Merlin):
‘It’s not true that after mini ark it’s not possible to have a transplant…’
If the above statement is true then WHY is not mini ark at least considered pre graft… why are those on graft waiting lists not even informed of its existence? What is there to lose? Even a 50% success rate would mean that half of chronic Kcer's could retain their original cornea.
(Prof. Severino Fruscella President Sitrac): ‘Unfortunately I have visited different patients submitted to MiniARK that introduced, after having operation, a worsening of the clinical situation and a great difficulty to correct the defect of sight with the contact lenses...".
Perhaps you could ask the professor to get these ARK patients to contribute to my database so that we can all compare the results… would it not be interesting to see both sides of the problem?
(Prof. Caesar Bisantis): I too have contaced this doctor in the past and he told me very much the same thing. At least he’s consistant!!
3) Again with the same question!!!… My site was NOT intended as a shrine to prof . Lombardi!!! It reflects a lot of what he has said because that is the bulk of the information I have. Had I been operated on by Dr. Abbondanza then I’m sure the site would look quite different. Also one of the main intentions of the site is to provide access to this information for English speaking kc sufferers… you as an Italian may be used to seeing this information but it far more difficult if you are English speaking.
You are also totally wrong in saying that I have also added prof. Lombardi’s secretary’s curriculum… I guess you refer to Silvia Micarelli, if you had bothered to read her profile you would see that she is Prof. Lomabrdi’s surgical assistant.
She has a vast knowledge of all things concerned with mini ark and keratoconus and was present during my personal operation. She is far more that someone that passes the instruments and mops the doctors brow and as such I felt she more than warranted inclusion.
Again this profile section was included more for the benefit of English viewers that have directly asked who are the people behind this treatment.
Also to repeat… I have contacted dr. Abbondanza and informed him of my situation. I have always had an open line of communication with him and although we differ on some points he has stated that he is more concerned with his work than politics. We agree to disagree.
4) As I stated above I intend to insert ALL verifiable testimonials that I am sent. I welcome the balance of those who are not happy with their results. I have been in contact with a patient that is in this category and has decided to try other methods after his ark to treat his KC. If he contacts me I will surely post his story… the same goes for anybody else out there that is interested in sharing there experiences.
You say you will send me topographies of your dissatisfied mini ark patients… this is a noble gesture but one fill of negativity.
If it makes the patient happy I will post it as I will any additional updates from his doctor (You must agree that whoever operated has to be able to defend these results… so again we can all see ALL the information and decide for ourselves).
Why are you not as quick to send me the results of members who have had great results? Each and every one of the questions you have set out here are negative… you never once speak of the prospect that there may in fact be those of us that are HAPPY with our results.
That is unless we are being accused of being paid to heap praise on the Lombardi eye clinic or that we are being tricked into having good results. The Prof. is a good surgeon but I doubt that he is good enough to cure keratoconus merely through the power of suggestion.
You say that no serious health professional would publish testimonials from his patients, and that if they did then the only reason is self promotion. I must remember this statement the next time I surf the net…
5) As regards the charts… they are a direct translation of those that appear in Italian. I do not seek to promote them as rock solid certainties but rather they are the OPINION of one doctor.
His name appears on the charts and if you disagree with his statements then you are welcome to disregard them.
If you feel you are being brainwashed by them and feel that you are incapable of discerning what you believe and what you don’t then maybe I should have added that you owe me 1000 euro at the bottom of the chart… (you can send me a cheque whenever you like.
Also this is again but one chart… it is the only one I have at the moment but if any doctor wishes to debunk these results then please have them send me the relevant information.
Your next comment is great news… that the corneal graft lasts for, on average, 25-40 years!!!… the statistic that we see everywhere, the 96% success rate for keratoconus, has been confirmed by all these doctors you have mentioned.
That means keratoconus needs only disrupt the lives of 4% of the KC population!!! But of course the result is not so… The question has always been how do we define success. Ask someone who has had PK and then ask a doctor who performs it… I’m sure their answers will be very different.
6) You speak about Prof Lombardi’s comments regarding cross-linking at the Fyodorov Institute, that he stated concern that the process in effect ages the cornea.
I did not know that he has purchased a C3R machine and have no idea as to his motives. I must speak to him about this when we next meet? You on the other hand have again only seen dark motives and declare that his actions are fueled solely by greed. I assume you have spoken to him in great length about this topic to reach such a conclusion.
7) I publicize nothing… I have merely reprinted in an accessible format information that has been readily available for years.
I have never said that mini ark is a ‘heaven’ sent cure. I know both the doctors have repeatedly said that it is not a cure… the extracts that you use are not my words.
It’s a shame you didn’t read my site because the only words that are mine appear in the history page.
The closing statements are the only personal written input I have in the site. And I state that my view can appear too ‘rosy’ I apologize if the majority of you feel that I should remain totally unbiased but my results have been great and I felt that somewhere I needed to say this.
Of course the balance will come when the legions of unhappy patients you believe exist come forward.
You speak of terrorism toward other forms of treatment… and false advertising. I believe to question and argue a contentious issue is far from terrorism. The posting of images specifically created to draw ridicule to a treatment… now that to me is premeditated manipulation of authority. Any first time viewer to this would automatically associate mini ark with nonsense. I know that you did not post these particular images on the French forum but I was just making the point in the broader sense.
I’m sorry but of all the arguments put forward concerning Ark this has to be my favorite. I remember arguing for weeks over this exact same issue on another forum. A fact that I am now ashamed of. Why did I waste so much valuable time?
It has to be a very lonely argument that has to resort to debating what the doctor calls himself!!!
Who cares? He can call himself whatever he likes as far as I’m concerned as long as he fix’s my eyes. This is petty politics… search the phone book in Rome and then get back to me when you have convinced all that unlawfully use the title Prof. to rescind it.
The only valid point that did arise from my previous argument was that people may be deceived to think that ‘prof’ Lombardi is somehow more able than he actually is merely due to his title.
In my case I could care less but there you go… others may feel differently, But if this is the only thing that sways your decision you really haven’t researched enough.
I have seen prof. Lombardi’s qualifications and unless he has a secret secretary that is great with Photoshop, I see no reason to disbelieve their authenticity.
I take it you have also seen these same documents?
Interesting fact about professors in Japan though… I didn’t know that. You never know when information like that will come in handy.
9) Looks like you missed this one… time for a coffee.
10) No, I did not write ‘1 to 10’ incisions on my site. These are not my words I simply reproduce them for you to use against me.
I truly do not know why there is a discrepancy in numbers… this is not my field of expertise. Maybe as time went on it was thought that more incisions where necessary… I really have no clue as to the reason.
Why do you mention Norbert here? Does the fact that he has had mini ark and is in contact with me a threat to you? I can see of no possible reason why it would be? Unless of course you want me to say that he had a high number and then that would afford you some satisfaction? I have meet Norbert and his wife and they are very good people… I cannot remember if I asked him how many incisions he had but if I had of done I certainly wouldn’t make an issue of it… if you find this amusing then you have a very strange sense of humor. We have the amount of incisions needed to do the job… no more no less.
I’m glad you have seen the Mini Ark photos… as you have been very vocal in the past that they do not exist. And furthermore you have stated that no one would post them as they are too ashamed of the result. Here we finally has the beginning of a gallery and you are still not happy… you have found fault with the incision length merely by viewing a photograph. Rather than thanking the patients involved for sharing their data.
Of course at a later date when you have had the images checked by the FBI you would be more than entitled to dismiss them.
11) 12)13)14)15) I’m sorry but these questions are intended for someone with vastly more scientific knowledge than me… and I expect you.
Of course I considered each of these before undergoing Ark but I did so in my own way. I did not limit myself to numbers… instead I asked questions of ex patients, I asked questions of doctors and finally I weighed up the results. Many have said I was crazy to risk my sight when so much opposition to the procedure is evident. But it was the lack of conviction and ignorance to keratoconus in general that finally lead me to my decision.
I did not meet or speak to prof. Lombardi until well over a year of personal study into the procedure. When I did finally meet him I was pleasantly surprised to find him as direct and politically incorrect as he appeared online. He had a passion for all that he said… I have sat in his waiting room for hours as he affords each of his patients the same consideration. That is not to say that some that have visited him are of a differing opinion… I can only speak of personal experience.
Again you speak of ridiculing the PATOGEN AGENT treatment… with total disregard for those that are experimenting with its effectiveness.
It was a totally new concept to me… I have had to open my mind to all sorts of different possibilities if I am to believe in its worth.
But I am trying it and have had varying results… Just a note, that the issue of amalgam lead poisoning is not restricted to this treatment. It is a source of continued international concern and debate from both points of view.
Again I find the things you find humorous very strange...
As I said it is a treatment that, although far from based on new principles, is very new to our culture. Some years ago acupuncture was also deemed a practice only for witch doctors and yet today we have acupuncture clinics in major hospitals. People always fear and ridicule what they do not understand.
16) You ask ME when this treatment is to be made public!? How should I know? From what I understand the process in Italy for legitimizing these types of homeopathic treatments are non existent or at the very least impossible to achieve with any haste.
But you will have to contact the clinic if you want more information… oh but you did and didn’t get any, sorry I forgot.
17) I find your comments here beyond taste. I personally have not made a firm decision regards the effectiveness of the pathogen treatment. I hope to set up a section on my database so that we can all compare results.
I hope your girlfriend never has to endure the kind of emotional and physical torture that goes along with KC… I know this was again just another of your jokes, just bad taste in my opinion.
18) I hope you enjoy your trip to Rome… Hopefully you get the results you require and can again dance on the decision of we foolish few that made the decision to have ARK.
You are a man that it seems sees the world in absolutes… but nothing ever is.
Am I happy with my decision to have ark… yes, it has exceeded all my expectations… is there room for improvement... yes, its an ongoing process... are there those that are not happy with ARK… yes, there are… and their reasons are various.
If you want the reason to be that Prof. Lombardi is an evil man that manipulates the innocent then so be it. But I find it much more productive to discuss WHY they are unhappy and then seek too remedy the situation.
I hate this kind of discussion…it make me feel like a humorless old man that has nothing better to do with his time than rant on the internet.
So to close I say this… miniarkdatabase.com is nothing more than a collection of articles, images and reports regarding mini ark. You are all welcome to contribute, to inform me of any errors and to provide your testimonies …
I cannot alter the text of reports that were not written by me but I can provide alternative views by publishing opposing doctors views.
You can tell me that my site is 'a stupid joke' (as some already have
) or you can offer your support... at the end of the day I'm nobody of importance, I'm just a guy who had keratoconus that now dosen't.
I have no influence on the way that popular opinion swings... the KC world turns by itself.
I'm sorry this text is not in italian but I accidentally erased the original Italian version my wife typed… and now shes not speaking to me
Scaistar I really don’t think people are so interested that it warrants setting up this little playground for us both to throw sand in each others faces.
My advice is to leave ALL sections of your forum open and let people have their say.
Best Regards,
Hari Navarro