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Post Info TOPIC: My Mini A.R.K experience


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Date: Fri Jan 14 11:14 AM, 2005
My Mini A.R.K experience
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Hi Everyone,


For those who don't know my name is Hari Navarro and a few months ago I travelled to Rome and underwent the mini ark operation to treat my six year old Keratoconus.


My decision to visit Prof. Massimo Lombardi and to eventually have him operate on me came at the end of a long journey. I had never heard of mini ark or RK (The technique from which it was perfected) untill my wife, an Italian... discovered an article about it through Google, Italia.


And it was that chance discovery that not only lead me back to my sight but also uncovered a tangled web of misinformation and half truths.


At times it seemed like it was the enviroment, the politics and personality clashes that were taking center stage and that my quest for sound medical information was falling behind.


I do not need to go into the differences that I've had with some of the Keratoconus soap operas main players. Our discussions have been very public and serve little purpose... apart from boring people and taking the focus away from the pursuit of a cure.


So, I met Prof. Lombardi... The first thing that struck me about him was that he was personable, very approuchable. I felt at ease and for the first day of tests he sat in and described exactly what was happening and attempted to clear up some of the myths that have surrounded mini ark since its inception.


At no time was he forcefull, nor did he try and push any of his ideals upon me. Thats not to say that he is dosn't have a clear opinion... he does. We spoke about many things both KC related and not... He seems to have mastered the art of having a clear vision and not allowing any outside influences to dilute it. He will speak his mind and is refreshingly politically incorrect. I had the overwhelming feeling that what I saw was what I got... that there was no skeleton in the closet.


The operation itself was quick and painless... and my sight really did return on the operating table. I walked out of the Lombardi clinic and was instantly struck by the huge starbursts around every street and car light. My vision had become cloudy and I must admit I became scared (Had I made the wrong decision?)


That night the irratation of the incisions was driving me crazy... I thought I'd never sleep. But I did fall asleep only to wake up in the early hours of the morning. I walked into the bathroom and switched on the light. The cloudyness was gone, the starbursts where tiny and I could see... I could see detail. The texture of the wall, how dirty the bathroom sink was... I looked at my hands and could see how old they looked!


The initial healing process continued for about a week... my right eye took a little longer. Then the irratation stopped... the eyedrops that they clinic had given me helped whenever I felt the urge to rub.


Prof. Lombardi had told me what to expect... He also said that the healing process was three phase. The scar tissue that was forming to strengthen my weak cornea would work its way through three levels before finishing.


I havent experenced any side effects of the operation... I have been in contact with others that have had mini ark and each has their own story to tell. Because some KC groups have elevated themselves to a level above the petty fighting that we are used to, they have been able to monitor mini arks results. For the most part it seems that people are more than happy... but there are some who aren't. I cant comment on their experience because I dont know them... but as with any medical procedure mini ark has a variation of results. Each must be taken on its individual merit.


I'm not here to push anyone into mini ark... I welcome any and all information concerning it, both good and bad. My intention is only to tell my personal story to anyone whos interested... To put forward some of the alternate research that effects wearers of contact lenses and recipiants of PK. This is not to scare people away from their correction of choice, merely to inform. I see it that whatever our choice there is no such thing as to much information.


But I am not a doctor... the information that we uncover may be out dated or indeed wrong. But whatever the case it will serve as a catalyst for further discussion... toward acceptance or rejection.


Well if anyone has any questions I'll do my best to answer. It really is a shame that mini ark has been once again pushed underground in some quarters. My only hope was that it could sit alongside any of the other options we are presented with and that through constructive debate maybe others could see it as an alternative.


Regards,


Hari Navarro


 


 



-- Edited by Hari at 11:20, 2005-01-14

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Date: Sun Jan 16 1:43 PM, 2005
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Hi Hari,


I was just wondering what level your sight is at now 6/6 or 6/7 etc. Left and right.


Best wishes,


Michael Coughlan.



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Date: Sun Jan 16 2:51 PM, 2005
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At my last check up my left eye was 10/10 and the right 6/10... This was a vast improvement. The Mini ark incisions have had time to settle since then... In a few days I am to see Prof. Lombardi for a check up so I will post my most recent readings.


Hari



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Date: Sun Jan 16 8:26 PM, 2005
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Hello Hari,


Thank you.


Best wishes,


Michael Coughlan.


 



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Date: Sun Jan 16 9:08 PM, 2005
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Don't hesitate to ask any questions you wish Mike,


I'm here for the asking,


Regards,


Hari



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Date: Mon Mar 28 7:33 PM, 2005
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Understanding Mini A.R.K:  (1) Peer Review


Now that I have lived with Mini Ark for a few months I thought it time to set down a few of my views and experiences. To start, the path that I took that finally lead me to Prof. Massimo Lombardi’s Clinic was not a particularly short or easy one. The same,  I am sure is true of each and every other Keratoconus victim… we all start off on the same train but invariably end up at different stations.
Very early on I was convinced that the Spectacles = Rigid hard lenses = Corneal transplant equation was far too readily accepted by the medical profession and even more readily passed on to us. In my own personal experience there was something very cold and patronizing about how my lens specialist fitted my prescription and shrugged away my concerns. As far as he was concerned my Keratoconus would cease. The ever present nightmare that had taken up residence in my life almost six years ago would mentally fade away.
And although I have never had a corneal graft, it too seemed far from how it was portrayed. The advertised percentage success rate that always swings around the mid 90’s was my first warning that the good ship ‘corneal graft’ was not entirely anchored in fact. To me this is false advertising and coercion at its worst… Someone new to Keratoconus would justifiably wander assured into the operating theatre… ‘96%!! What’s to worry about?’ But of course if these statistics were true then Keratoconus would be all but cured.
I can only imagine, but the true face of living with PK must be a much different story… although in saying that the internet is full of the stories of happy recipients of the graft, so maybe I’m wrong. I think the answer is not to talk in absolutes… that the hard truths that accompany any surgery must be discussed.
One strange thing that has turned up time and time again is the notion that Kcer’s need to be treated with kit gloves, that we will shatter if dropped. Of course we deserve due respect toward whatever treatment option we ultimately choose, but to defer comment or paint something as something it may not be helps know one. I myself welcome all reports on Mini ark experiences, both good and bad… how else are we supposed to grow?
So Mini ark, a treatment that is all but totally ignored by what we consider the responsible medical establishment. It is at this point that I have to thank my wife, for it was she that stumbled across it whilst searching the internet for an option, any option to my predicament.  
I intentionally resisted contacting Prof. Lombardi initially for many months so that I could evaluate the treatment and the man without coercion.  At the time he was contributing to the forum of an international KC support site. I listened intently to what he had to say, my interest peaked as he mentioned many of the things that had worried me since well before even hearing his name. He was extremely disparaging of contact lenses and spoke at length about their detrimental effect on the epithelium and what he perceived as the misinformation that was being circulated concerning their gas permeability. Also his comments on the corneal graft flew in the face of popular opinion. He warmed to those who took the time to put personalities aside and try to come to grips with the concepts he was presenting, and equally he made no secret of his contempt for those who nibbled away at his professional credibility or attempted to force him to comply with the rules of conduct that the medical establishment deem prudent. This fiery debate lasted much longer than it should and concluded, for some, with Prof. Lombardi being banned as well a number of others, myself included.
I have to say that I was both shocked and impressed by this action. Shocked that an organization that purports to offer a support network to Keratoconus sufferers could so easily slam the door on so many of its members, but I have since learnt that I was naďve and that this is not a rare occurrence.
It really gave me pause for thought, I attempted to view the situation from the point of view of the forum administrator. Sure you might disagree with what Prof. Lombardi is saying; sure you may think he has ulterior motives for appearing on the forum, you may dislike his directness… Why not then administrate, set up a section that only caters for Mini Ark (The interest was certainly there) much the same as has been done for Ferrara rings? Allow the discussion to continue without offending others.
But in shutting him down the truth was if anything pushed farther from our reach. If he had of been deceiving us we may never had found out, if he was offering a valid alterative then we were having the option of deciding for ourselves removed.
What impressed me was that throughout the entire fiasco Prof. Lombardi never changed tact; he never once gave me the impression that he was back peddling to preserve his public persona so as to entice more recruits to his procedure. He was online as he is in real life… what you see is what you get. The only reason I mention this sour period in my journey is because it was very influential, for me at least in defining what my final decision was to be. Others who experienced these same proceedings I’m sure will have an entirely different view. Ok enough said, time to move on…
One of the lasting and main criticisms of Mini Ark is that it has not been properly peer reviewed. That is, it has not been judged by the medical profession as being worthy of mention.
Let me again state that these views are my personal ones; another Mini Arker may have a completely different take on the situation. Anyway for me it seems that there are two distinct types of people here.
The first is the person who needs verification; they trust in the establishment, they may even acknowledge that it is flawed. But feel that those men and women in white coats that we trust our health too are at all times focused on the pursuit of excellence and what they say goes. Six years at medical school, they have to know something, right? And a great many do, but to my mind ‘blind faith’ in any field is only inviting danger.
The other type of person is one that is probably considered erratic and foolhardy by the first, these are the ones that don’t necessarily take the first answer they hear as gospel. They evaluate the pros and cons on a personal level and are not afraid to step were others sense danger. This too can be a recipe for disaster; I guess at the end of the day its each to their own.
Ok, you are right, that was far to general an evaluation. Even I know of a person that to this day treads the fine line between both worlds. That’s to say sticking to the ‘Accepted’ treatments but also not being afraid to rattle a few cages when the need arises… nothing is clear cut.
So the sticking point…’Peer Review’ it is this that seems to separate the factions. But what is it that we actually require? A review is only as good as the reviewer, even the greatest scientists can make mistakes… how do we gauge the level of their success? We all check and sometimes double check even our own actions, but then we don’t all have someone’s sight in our hands.
So this, it seems dictates that some safety net has to be in place… but what if a doctor such as Prof. Lombardi makes a discovery that falls on deaf ears. What if it’s true that independent assessment has been sought over the years but continually refused?
Just for argument, what if the medical community at large is convinced that it is right and shuns the upstart notions of a Doctor trained in the former Soviet Union, who presents a theory that contradicts all that they believe to be true?
But then what if this Prof. Lombardi was right… what even if he was half right? Wouldn’t even that constitute at least a murmur of interest within the realms of a disease that doctors admit to having few tools to combat?
It seems history is strewn with examples of scientific breakthroughs that are repressed by those who have power to.
Galileo, ridiculed by his colleagues… these same colleagues who refused to even put their eyes to his crazy telescope, they were so sure they already knew all the was to know about the laws of physics. Surgical science has been well served with many courageous pioneers, groundbreakers in the fields of sanitation, nutrition and molecular study. 1848 and Dr. Semmelweis introduces the then revolutionary idea of requiring medical staff to wash their hands in chlorine before entering surgery. An idea that seems so logical today but took until many years after his death to be finally accepted.  See the famous case of Dr. Louis Pasteur for yet another example… What I am trying to illustrate is that medical and scientific innovation can not always fit neatly into a pre- packaged ideal.
It has been written that organized medicine is far too reliant on its overly rigid definition of what constitutes scientific proof. That the Canadian inventor of the double blind study never intended for it to be used in such a ‘set in stone’ manner. It was intended to eliminate the subjective bias of scientific investigators and their research assistants, not to become the ‘be all and end all’ of scientific proof in clinical medicine. And that this dogged adherence to such a narrow definition of proof holds the sword of Damocles over many who attempt to innovate within medicine.
In conclusion, I guess what I’m saying is that in my case I was not going to let the stone wall tactics of the multitude of eye specialists that I attempted to question over Mini Ark deter me from forming my own opinion.  That information, all information is key and that there are times in life when public consensus needs to be intimately dissected.
Regards,
Hari Navarro



-- Edited by Hari at 19:57, 2005-03-28

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Date: Tue Mar 29 5:36 PM, 2005
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Understanding Mini A.R.K: (2) The Path. Agent


I think it was in the Easter of 2004 that I first heard of Prof. Lombardi’s pathogenic agent discovery. He stated that after over 5 years of experimentation and research he had finally been able to define the "biological factor" that caused Keratoconus.
As can be imagined this caused quite a stir within the confines of the message board where it was announced. He initially countered his claim by saying that complete details where not at that time fully available, I gather this was so as to ensure protection of his discovery. I now know that, in Italy at least, this is no easy task. Especially in this particular case as the Italian health authorities are extremely reluctant to indorse any treatment that falls into the bio-naturopathic sphere. 
Understandably Prof. Lombardi was immediately bombarded with questions… ‘What exactly is the Path. Agent?...  Why cant you tell us more? … Why if Mini ark is so successful do you now ask us to accept the Path. Agent treatment?  … You say you have a cure, how dare you hold it back from those who desperately need it?
I think it is the last question that spoke the loudest. Now I may be proven wrong but I have never heard Prof. Lombardi ever claim that the Path. Agent or Mini Ark for that matter were cures (I saw them as treatments, options to consider then accept or reject).
But as it happened this incorrect assumption soon grew a life of its own, people rightly or wrongly became very indignant.
It was then claimed that the only way of finding out the details of the ’Agent’ was to actually travel to Rome and pay for it. Also at this time I began to hear rumours being spread that Prof. Lombardi was enticing those who had undergone the treatment to remain silent so as to draw more customers to his ‘Wild west medicine wagon’.
Many forum members’ tempers overflowed, this mixed with Prof. Lombardi’s painful directness and unwavering European sensibilities, caused the discussion to quickly disintegrate into accusation and name calling.
But from the very beginning it was my feeling that what Prof. Lombardi was trying to do was test the waters. After all, here was yet another of his discoveries that he could assure himself would not be readily embraced by the medical establishment.
He offered snippets of information, for example he immediately told us that what he had discovered was a pathogen, that the treatment was bio-cybernetic, and he asked us about dental amalgams… How many of us took the time to actually find out what these things are?
I remember distinctly the reaction when he asked about our amalgams… something along the lines of …‘who is this guy, we ask about our eyes and he’s looking in our mouths?!… this guys a fraud, a crook, a clown with big floppy shoes and a red nose’.
To be completely honest when I eventually did undergo the Path. treatment I knew most of what was happening in advance. I had researched the basis of bio-cybernetics; I had written to Prof. Lombardi for verification on certain points, I had found out that there is in fact a very real threat from dental mercury, not only to the eyes but also to every other organ in our bodies. This is documented, it is acknowledged by a growing number of public health watchdogs worldwide… accept the FDA of course which has proclaimed that they are totally harmless.
I do not write these things to attack or demean anyone, these are just the observations I personally made at the time. Many are just prime examples of human nature both good and bad… I’m not a psychiatrist so I don’t know why people reacted as they did. In this case it may have been the culture/ language divide, or merely the limits that internet forums impose on fluid conversation… but personally I think it’s more to do with Keratoconus itself.
Not only does KC impair our sight but it is also torments us mentally. It is always there constantly distorting our ability to do the simplest of tasks, even those lucky enough to have excellent RGP corrected sight still have to reside to the nagging fact that their visual life isn’t perfect. And it is this weight that we feel that makes us so passionate about the quest for a cure.
So, back to the subject, at its simplest it is contended that the pathogen directly attacks the structural integrity of the corneal collagen. The affected areas compromised molecular bindings slacken under intraocular pressure, this added too by eye rubbing and/ or contact lens wear leads to thinning. Obviously there is much more to it than that, additional details can be found on Prof. Lombardi’s site.
The objectives that The Lombardi Clinic seek are set out as such:
1) To eliminate the pathogenic agent of Keratoconus;
2) In eyes operated with A.R.K., Mini A.R.K. and epicheratoprotesi, etc to reinforce and to consolidate definitively and irreversibly the effect of surgical modification.
3) In the eyes already having undergone transplant: to prevent the possible reactivation of the Keratoconus in the transplanted cornea, in as much as the pathogenic agent is still present in the donor tissue;
4) In the eyes with Frusts Keratoconus: to prevent the possible progression and the transformation into evolved Keratoconus;
5) to prevent the progressive evolution of Keratoconus in the eyes with preclinical evolutionary Keratoconus but that still have a Visus of 10/10 natural and therefore without exhibiting visual disturbance that evidences a subjective worsening of the sight (only diagnosable with the corneal map, the Keratometer and the pachimetria)
6) To prevent KC forming in the eyes of relatives of patients affected with Keratoconus with preventive medical therapy.
7) In the patients with an eye already operated, for the presence of evolved keratoconus (a transplant, ARK, Mini ARK, epicheratoprotesi, Lamellar keratoplasty, etc) and the eye adelfo (controlaterale) with a full Visus and therefore like in point 5 and for the eye operated like in point 2;
8) In the eyes already operated using ARK, Mini ARK:  to improve the progression to natural vision, reducing therefore the possible additional correction of the residual ametropia
9) To eliminate those 2-3 for 1000 of possible failure of the ARK and Mini ARK.


I have translated this list from Prof. Lombardi’s site so please accept my apologies for any mistakes or omissions.
The treatment itself follows an intensive set of bio-cybernetic tests; these are carried out by Prof. Lombardi’s colleague, Dr. Valerio Tomassini, a Naturopath. The results of the tests are then collated and a treatment plan is formulated.
I have to say that this type of medical approach is far removed from what I was raised to believe effective. But in eastern European regions and of course many Asian countries these principles have been used and perfected over hundreds of years. Our traditionally held medical beliefs are in their infancy by comparison.
Much of this kind of treatment has been regarded with a ‘witch doctor’ connotation or at best considered a placebo driven fringe alternative.
But now we are seeing more and more a renewed interest taken in light of some of modern medicines failings. Acupuncture clinics are appearing in major hospitals and Chinese herbal medicine is becoming more readily available to state but two examples.
The entire Path. Agent procedure lasts less than an hour and is totally painless. You are then presented with a detailed folder containing printouts of all your results and an accompanying course of treatment.
The interesting thing for me was the combination of this naturopathic approuch and the mathmatical surgical percision of the Mini Ark. Two very different modalities that in my opinion complement each other very well.
Regards,
Hari Navarro



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Date: Wed Mar 30 6:16 PM, 2005
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Understanding Mini A.R.K (3): History


 


Many are under the misconception that Mini A.R.K (Asymmetric radial keratomy) is a totally new and radical form of ocular treatment. Although it is true that the asymmetric, shortened incision form of the operation, discovered and employed by Prof. Massimo Lombardi, was an inspired departure from previous forms of the technique, refractive surgery in fact has its roots many years ago.


As far back as 1869 Snellen (whose name was later given to the famous eye chart) contemplated the use of corneal incisions across a steepened meridian to flatten and thus correct astigmatism.


But it was Galezowski some 20 years later that would actually attempt to surgically flatten the corneal contour, although he was to meet with little success.


These were times of innovation and disappointment but historical, ground breaking discoveries in ophthalmology where about to be realized. 


Trainee Dutch physician Leendert Jan Lans was, in about this same period, meticulously studying the base principles that would go on to define what we now consider keratotomy. His work is still regarded by many as a standard by which modern refractive surgery is assessed.


He was a forerunning practitioner of surgical corneal flattening, this he achieved by incisions made on the anterior surface of the cornea. In varying the number, direction, and shape of the incisions, He could manipulate the refractive error and customize the correction.


The modern age of refractive surgery is generally acclaimed to the late Professor Tsutomu Sato of Juntendo University, Tokyo.


In 1936, He observed that spontaneous breaks in the Descemet membrane in keratoconus patients produced a flattening of the cornea when these wounds healed.


This led him to the idea of posterior corneal incisions. He also observed that injury to the Descemet membrane was greater than that induced by injury on the Bowman layer, suggesting that surgery on the posterior cornea would be more effective than surgery on the anterior cornea.


In the late 1940s, anterior incisions were added to enhance the effect of the posterior incisions after experimental studies on radial and tangential incisions in rabbits to correct astigmatism.


His work built upon the principles outlined by Lans nearly half a century earlier and thus he applied his variant RK incisions to the treatment of keratoconus corneas.


After a period of dormancy refractive surgery and radial keratomy was to have its next burst of creativity half way around the world in the former U.S.S.R.


Svyatoslav Nikolayevich Fyodorov , (August 8, 1927-June 2, 2000) was one of those men whose intense intellect was only to be surpassed by his all encompassing lust for life. He was a giant in the field of ophthalmology, with his true achievements only now being fully appreciated.


Born in Proskurov (now Khmelnytskyy, Ukraine), Fyodorov graduated from Rostov Medical Institute, then worked as a practicing ophthalmologist in a small town in Rostov Oblast.


In 1960 he performed the first intraocular lens replacement operation in the Soviet Union.


During the 1970s and 80s, Fyodorov developed a system of anterior radial keratotomy that, by varying the number of incisions and the amount of uncut clear central zones between them, permitted him to carefully control the degree of visual correction.


He opened his work and clinic to the world and began teaching foreign specialists his methods. Many took their new found knowledge that radial keratomy (RK) could indeed reduce or eliminate myopia, back to their respectively sceptical countries.


Fyodorov had started performing surgery in humans in 1974 using a freehand razor blade fragment in a blade holder, checking the depth of the incision with a depth gauge and deepening the incisions as required.


In 1980 he became a head of the Moscow Research Institute of Eye Microsurgery.


Fyodorov also had political aspirations and was a member of Congress of People's Deputies in 1989-1991. He was elected to the lower house of the Russian parliament Duma in 1993. He ran for Russian president in 1996.


Tragically the world was to abruptly lose the mind and influence of this man far ahead of his time, when in June, 2000 he died in a helicopter crash outside of Moscow.


 


Prof. Massimo Lombardi a frequent pupil of Fyodorov had, even by 1984, imported (RK) radial keratomy from Moscow into Italy and Western Europe.


The ophtalmological establishment were far from welcoming, making no secret of their distain for what they regarded a radical procedure.


Remember that at this time even intraocular lens implants were not being preformed or even considered in Italy, Fyodorov had been doing so since the 60’s.


Prof. Lombardi’s diamond blade surgery for myopia it would seem stood little chance of acceptance.


The academic fighting, rejection and recriminations were to continue for many years. That is until the eximer laser, a godsend for those not capable or willing to devote the many years required to perfect surgical skill, descended and created master surgeons at the push of a button.


In was in this early part of the 80’s  Prof. Lombardi pondered that ‘If strategically located incisions on a cornea flatten the points of application correcting miopia diopters, maybe the same could occur in those affected by keratoconus’.


Putting his contention into practice R.K for keratoconus met with early success, he began operating systematically with increasing results.


Patients were happy but not fully because they still experienced some visual distortion. It soon became apparent that by applying the symmetric R.K. as taught by Fyodorov, he was repeating the same irregularities below the previous Keratometric level.


Improved sight and miopia correction was still achieved, but there was the feeling that some sort of adaptation was required.


At the time there was no way to perceive the corneal surface, there wasn’t a method to see what effect asymmetrically placed incisions would make.


This problem was solved when the first corneal map was presented at congress.  Immediately the answer became evident, and A.R.K. (Asymmetric radial kerotomy) was born.


Many years of technical refinement and improvement followed. Then one day whilst in surgery Prof. Lombardi’s then assistant Dr. Marco Abbondanza commented that recently an American ophthalmologist had published a paper on mini-R.K suggesting very good results using shorter incisions.


Prof. Lombardi then decided that same day to try this reduced version of RK in his ARK, considering that he could always prolong the incisions should the experiment fail.


This turning point was witnessed by Prof. Lombardi’s nurse and ophtalmological assistant Silvia Micarelli, the anaesthesiologist, Dr.Franco Bianco, and colleague Dr. Massimo Fratalocchi. Also the secretaries at the Lombardi clinic Giovanna and Angela, whom are still there to this day, knew of the new modification the same day. I only mention this as there is some contention as to mini arks beginnings.


And so mini A.R.K came into existence, but still the road its life and evolution seem to take is a rocky one. The paternity of it's creation is contested, it is classified as an outdated technique by those who know nothing of its function, it is beaten and bruised from all quarters… all quarters that is except for those patients, such as myself that can see again and will be forever indebted to the road it took to get here.


This may seem like a far to rosy assessment of mini ark and I guess that having had it I'm more than a little biased. But all I can say is that although it has exceeded all my expectations it is at the end of the day a medical procedure that suffers the same risk factors as any other... expectations must be weighted against many factors. All I would hope is that it is at least considered.


Please understand that this is only my take on the sequence of events, I invite discussion on any inaccuracies I may have unintentionally made.


Regards,


Hari Navarro



-- Edited by Hari at 16:33, 2005-03-31

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