Elective Treatments

[jayuk]

Hari

As I said before in one of my posts, you are one of very few whom has a strong case as to why this procedure should be looked at. You have, time and time again, helped and answered many posts on this very procedure. Whilst I would agree that you have never pushed this procedure, I think your sole aim, from how I read you, is to generate awareness for Mini Ark.

However, what doesnt help here, is Prof Lombardi's lack of data that he presents. You did mention that he has had many papers rejected before a commitee/council?...Now one thing I do know, is that within the medical committee there is ALWAYS a reason that is given to the author...regardless of if its an overview paper, or a treatment option......are you aware of what reasons were given for rejection?.......

I think if he could spend some time; and I say this with the utmost respect, preparing a study on his procedure over the past X amount of years...this would prove far more valuable! We now live in different time than say 10 years ago!..Information free flow is now open and I am certain that with an openly available paper/study many would revisit this procedure........but there are still concerns, which are valid, ie cuts in thin cornea, impact of scaring to surface area, impact of KC progression in a Mini-ark'd cornea......these are the kinds of Q's that I have always asked myself...

The fact that this has worked for you and others is extremely promising....and shows that it does need a visit........

Jay

[Andrew MacLean]

Is it not strange that in 20 years we do not have one ... published report spelling out why the Lombardi clinics results are misleading or false?

Perhaps the strange thing is that the results are not published in a form that is easily accessed by the scientific community and the patients who may want to compare one procedure against another.

As I did imply above, if there is a choice between a regulated environment and one that is unregulated, I should always prefer the former.

Andrew

[GarethB]

As jay says, attitudes have changed in the past 10 years.

Due to Thalidamide causing birth defects it was withdrawn from use and many drug regulations put in place.

Now as scientific awarness has changed, information exchange is better and we better understand thalidamide and its action on the body, it is now finding its way back into mainstream medicine and has improved many patients quality of life beyond measure. OK it is no longer used for morning sickness, but in areas it was not considerd beneficial originally.

Perceptionas have changed, perhaps Prof Lombardi collating all his data and presenting it in an accessable manner (no idea how it was originally presented) it might promt new discussions in the proffesional environment and possibly judged favourably?

[Andrew MacLean]

Gareth wrote

Perceptionas have changed, perhaps Prof Lombardi collating all his data and presenting it in an accessable manner ... it might promt new discussions in the proffesional environment and possibly judged favourably?

...

Or not as the case may be.

It would be a shame if we predicated this discussion on the assumption that the whole medical and scientific establishment had ganged up on someone without reason. It is the duty of the researcher to publish his or her findings, not the community to go hunting for them.

As things now stand, I just do not know what the results of this procedure are, not because I have failed to understand the published data but because the data have not been published.

Neither do I think that this is the fault of peer review panels refusing to accept learned papers from researchers in the field. In the modern environment anyone can publish the data they want to put into the public domain on the www. The public can then draw conclusions from the way in which the data is made public.

Andrew

[Hari Navarro]

Hi,
The thing is that I have nothing to do with the how or whys of the way the Lombardi clinic does business. I can only speak from the persective of regaining my sight via prof. Lombardi's method and thats all.
From speaking with him I know he avoids paperwork whenever possible... much prefering the practical application of his craft. Again this is not acceptable to many... I know he is at present collating updated data. Some of which he has already presented online. At this point it is far from detailed but then as I have said his door is always open to any medical professional that wishes to review his files further.
Remember these files go back 20 years almost and to collate it completely would be a huge task. Personally I think its a task that is entirely nessesary. I would love for it to presented in some form or another - Not to give the Lombardi clinic any further publicity but more for those of us that have had ARK so we can show people the validation behind our decision.

Prof Lombardi has also spoken about not wanting to ram mini ARK down the throats of those who do not wish to learn about it.
I fully agree that the enviroment of today (with the growth of information technology) is vastly different from that of 20 years ago. But for many the ways of the past are hard to shake off.

It would be a shame if we predicated this discussion on the assumption that the whole medical and scientific establishment had ganged up on someone without reason. It is the duty of the researcher to publish his or her findings, not the community to go hunting for them.

I outright stated that this was NOT a case of a percecution complex mentality. It is, in my opinion, a case of the medical establishment neglecting to cover all the options available to us.
I strongly disagree with the contention that it is not the responsibility of this medical community to hunt out all possible avenues for us. If we are to rely on published reports then we are to eliminate a whole section of non sanctioned study. Study that may not have been presented via the 'accepted' route for any number of reasons. Personalities and politics do play a role in many of the decisions we have made for us.

Prof. Lombardi has published his work on his personal webpage and goes into detail regarding the process by which mini ark works, but it is still attacked.

All the medical concerns that have been noted below are valid but wouldn't it be more appropriate that a qualified doctor was asking them and delving for the answers. We can talk ourselves in circles... all I say is dont dismiss ARK untill you have researched it. Even if there is very little in the way of mainstream medical papers on the subject, there is ARK information available from which we can all begin to draw our own conclusions.
Regards,
Hari

[jayuk]

Hari

Completely appreciate what you are saying....but do bear in mind the world we live in?....Legal ramifications of treatment failure, unsubstantiated claims, lack of data, research etc. If what you say is true, and Prof Lombardi see's no reason do make this available than I say its more his fault than not, in making this available to patients. A Consultant/Doctor does have a responsibility and to simply say "my door is open" is erroneous. Lets say for example, Joe Blogs walks in off the street...and asks him for legacy data on the procedure going back?..what would his come back be?...."Thats not necessary?" or "wel its worked for soo many" ?.....I am in no way saying this would be his response and speaking ill of anyone here...........but this is an extremely valid point.........afterall...to be as flippant and say my door is open...its simply, in my opinion, not helping KC or this Procedure......and arouses more doubt on this treatment.....

also, I just find it really hard to beleive that majority of Opthams have rejected this treatment without a valid reason?....as there are some really bright new generation of opthams out there who are willing to look at all options.....

Its almost like theres a massive piece of the jigsaw missing (and no its not a New World Optham order that meet every year to push Transplants and reject any other treatment! (Not implying that thats what you beleive BTW))...

J

[GarethB]

One point to remember is that todays litigation culture is mainly seen in the US and the UK.

Such a culture is less prevelent in my experience within Mainland Europe.

[Hari Navarro]

The thing is that this was not a concious spir of the moment decision by the Lombardi clinic to regulate the flow of its research data. This was a slow drawn out process that evolved over many years of not being accepted by the medical community at large.
From what I can gather this all started when Prof. Lombardi returned from studying under Prof. Fyodorov in Moscow. The refractive techniques that prof. Lombardi subsequently introduced into Italy and Europe where initially sidelined because of the unjustified stigma that medical procedures had that originated in the former Soviet Union.
This progressed to a situation where doctors did indeed introduce mini ark into their practices, abeit without the proper training that would have come about if they had actually consulted prof. Lombardi in person. The negative results that resulted drew further fire toward the technique and it was largely discredited.
The introduction of the eximer laser labeled ARK and any of its variations as 'old school' (Leading refractive surgeon Leo Bores has a very intersting insight into this subject:
http://www.e-sunbear.com/
navigate to the section concerning lasers in refractive surgury)...

As far as having to walk in off the street to gain data this is not entirely true. I for example had more than enough information to make my decision before ever even talking to prof. Lombardi. We all like to think of ourselves as armchair doctors but the truth is that even if we had pages and pages of numbers to pour over would we actually be able to correctly deciper them.
The open door policy that prof. Lombardi speaks of is a last ditch attempt at getting those that are interested to be able to review the work (from a medical stand point, this is an invitation to doctors)... again, this was no kneejerk option it is one that has come at the end of many years of trying to get his point across.
What do you think is the reason that no one has made an official statement discrediting ARK? We know that its been around for years and we know that it has many ex patients... we have seen it debated on various forums... what possible reason is there for the deafing silence regarding the technique. I think the reason is that many have not even heard of it. That the new school mentality is that this is a bygone failed experiment... I truelly hope that someone of these new Opthams does dig a little deeper than face value.
All this talk of legal protocol and litigation to my mind is even more reason for someone to protect our interests by reviewing ARK and its development.
Hari

[Andrew MacLean]

The straightforward answer to Hari's question is "yes", I would be able to understand the information if it was ever presented. So would Matthew, so would Gareth, so would many others. You do not need to be clinically trained to understand statistical data, just educated.

The fact that the information has been withheld seems deeply suspicious to me, and offering spurious justifications for this silence does nothing to allay my fears about the probity of the treatment offered.

I am delighted that Hari has a successful outcome, and I hope that his KC remains under control for many years.

Nonetheless, Hari's anecdote (however sincere and even heartwarming) is woefully inadequate as a substitute for properly presented and verified data. I guess that until such data is presented for peer review, there is little or no chance of a treatment being offered in the UK as a standard therapy.

This is either a pity of the advocate's making, or it is a happy deliverance for potential victims in the UK of a speculative procedure that has the potential to cause harm.

Hari says that this procedure's pioneer in the west has presented papers for publication, but they have been rejected by peer panels. Well, that is what peer panes are for! They separate the chaff from the wheat so that the information published in professional journals is of a high and dependable standard.

Andrew

[Hari Navarro]

Just a quick thought for poor old Dan Lindley, sorry Dan I know you started this topic and now its kinda taken a tangent
If you can try and look into all of the procedures you see here. There really is a variation from doctor to doctor knowledge wise... but if you can walk into your next examintion armed with even a little advance knowledge you will be all the better for it.
My doctor for example told me not only didnt that I have KC but also that I required no correction I even half believed him before I walked into the telephone pole outside his office
There are some fantastic researchers and doctors out there its your job to search them out. Good luck.
Hari