Well Andrew I now know who to come to next time I read:
Proteins from the corneal epithelium were isolated from 6 keratoconus and 6 myopia patients (controls) and separated by 2D-gel electrophoresis. Six % and 12% SDS-PAGE gels were used to separate low and high molecular weight proteins. Gels were silver stained and protein spots were defined by Melanie II software. The proteins that were most altered in expression comparing keratoconus and controls were extracted, trypsin-digested, and identified by mass spectroscopy.
What was it they just said?
Ok I'm just messing with you... I know you were talking about straight out patient optical data. But I wasn't... the data I'm more interested in concerns the mechanics of ARK, the hows and whys of its fuction. Statistics can be skewed to present any point of view. If that is all that you are after then visit the german KC site. They have a growing resource of ARK statistics... its not complete but its a start.
No data is being withheld by the Lombardi clinic... unless to equate the fact that it is not being published with a concerted effort to withhold information. If anything prof. Lombardi gave me to much data to absorb when I approuched him. Unlike yourself I am not a man of science who can understand the intimate workings of such a defined subject.
If this 20 year old 'speculative procedure' does hold the potential of causing harm then why are we not actively protected from it?
I am in no way trying to substitute my personal experience for scientific data. I offer it in the hope that it may entice someone to publish prof. Lombardi's work.
Once its out there then those in the know can offer an informed opinion that we can all access. This can never happen if ARK is continually swept under the carpet.
Also I never said that Prof. Lombardi's work had been rejected by peer panels... to my knowledge no attempt was ever made to actually form one. I said that they had been put forward... for the most part thats as far as they got.
So it seems that the chaff and wheat are left for us to separate.
Hari
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Hari Navarro
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jayuk
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I could probably decipher that Hari!...But i wont as that would be panikity!!
Although I must agree with Andrew that many of the studies I read and do read I can understand by merely applying some logic and looking up what the reference is. However I also see where you are coming from in that we could argue that Patients wouldnt be able to do this....so Id be inclined to say that its understanding is down the the individual!
I think we all just have to agree to disagree and each is right in there own way......and maybe the one person who can really push this back into the limelight is Prof Lombardi......aside from that we can debate till the ants move the sand.......
J
Although I must agree with Andrew that many of the studies I read and do read I can understand by merely applying some logic and looking up what the reference is. However I also see where you are coming from in that we could argue that Patients wouldnt be able to do this....so Id be inclined to say that its understanding is down the the individual!
I think we all just have to agree to disagree and each is right in there own way......and maybe the one person who can really push this back into the limelight is Prof Lombardi......aside from that we can debate till the ants move the sand.......
J
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Hari Navarro
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You are the only other person along with James Blunt that I have ever heard use the word 'pernikity' 
I would wager that the outstanding majority of KCer's would require a little more than just a keen intelligence to fully understand what medical specialists take years to learn.
Sad thing is that I think that prof. Lombardi has little interest in the limelight... if so he would be flooding the internet with Lasik style banners and adverts.
But I have found him to be a man of principle and mini ARK is very much his baby. He wants to see it take its place alongside any other valid procedure. I personally fear this will never happen... so even ,thinking sceptically , on the off chance that what he proports is true then it will only be the KC community that loses out.
Hari
I would wager that the outstanding majority of KCer's would require a little more than just a keen intelligence to fully understand what medical specialists take years to learn.
Sad thing is that I think that prof. Lombardi has little interest in the limelight... if so he would be flooding the internet with Lasik style banners and adverts.
But I have found him to be a man of principle and mini ARK is very much his baby. He wants to see it take its place alongside any other valid procedure. I personally fear this will never happen... so even ,thinking sceptically , on the off chance that what he proports is true then it will only be the KC community that loses out.
Hari
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Andrew MacLean
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Actually I think all you need is a working knowledge of classical languages. I have a better than good idea what that paragraph means, as indeed do you!
Hari, you are in danger of becoming increasingly shrill in support of a procedure that has never been particularly under attack. The more you defend the ground the more people are going to think it needs closer examination.
Andrew
Hari, you are in danger of becoming increasingly shrill in support of a procedure that has never been particularly under attack. The more you defend the ground the more people are going to think it needs closer examination.
Andrew
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Hari Navarro
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Well ok... as has been already said we will have to agree to disagree.
Personally I think that much (very much) more than a 'working knowledge of classical languages' is required to FULLY understand the sciences at play here - To understand them to a level where we can competently report to our fellow Kcer's. This is like saying you can fly a jumbo jet after merely reading the owners manual. Piecing together sentences to reach a conclusion is not good practice as far as I can see. What classical language would I have had to study to know what 'SDS-PAGE gel' is for instance?
Not to sure about the shrill thing.
Surely you jest when you suggest that prof. Lombardi and ARK have 'never really been under attack'. Forgetting the medical climate that has been in Italy over the last 20 years I draw your attention to the numerous internet forums from which Ark has been discussed. The alligations have been many and at the end of the day, as is only right in a democratic society, prof. Lombardi was banned from speaking further. Did you by chance catch the defamatory images and even satirical music aimed at Prof Lombardi and his work that appeared on the french forum? It is designed to discredit and ridicule... Prof. Lombardi is big enough to worry about that for himself, my concern is with the patients that have had to endure this superficial responce.
And it is not isolated... it is also not an all encompassing concerted effort to attack that which little is known about - as within this heated debate there has also been those that genuenely want to learn more.
Your last statement echoes my sentiment exactly... I hope my shrillness (is that a word?) does make people think this thing needs closer examination. Bring it on.
Plus I do not defend ARK (at the same time i do not denegrate the procedure that gave me back my sight, there are still questions that I too are looking for) what I do say is that it is high time that someone with more than just a cursory knowledge of medicine stepped up and showed wheter or not mine and the many other successful ARK patients are just freak results of a technique that desrves to be overlooked.
I think we have all but exausted each of our respective points, maybe its best to let things lay as they do and have people decide for themselves.
This is not a question of wether to have ARK or not. Its a question of being given the option to decide.
Hari
Personally I think that much (very much) more than a 'working knowledge of classical languages' is required to FULLY understand the sciences at play here - To understand them to a level where we can competently report to our fellow Kcer's. This is like saying you can fly a jumbo jet after merely reading the owners manual. Piecing together sentences to reach a conclusion is not good practice as far as I can see. What classical language would I have had to study to know what 'SDS-PAGE gel' is for instance?
Hari, you are in danger of becoming increasingly shrill in support of a procedure that has never been particularly under attack.
Not to sure about the shrill thing.
Surely you jest when you suggest that prof. Lombardi and ARK have 'never really been under attack'. Forgetting the medical climate that has been in Italy over the last 20 years I draw your attention to the numerous internet forums from which Ark has been discussed. The alligations have been many and at the end of the day, as is only right in a democratic society, prof. Lombardi was banned from speaking further. Did you by chance catch the defamatory images and even satirical music aimed at Prof Lombardi and his work that appeared on the french forum? It is designed to discredit and ridicule... Prof. Lombardi is big enough to worry about that for himself, my concern is with the patients that have had to endure this superficial responce.
And it is not isolated... it is also not an all encompassing concerted effort to attack that which little is known about - as within this heated debate there has also been those that genuenely want to learn more.
Your last statement echoes my sentiment exactly... I hope my shrillness (is that a word?) does make people think this thing needs closer examination. Bring it on.
Plus I do not defend ARK (at the same time i do not denegrate the procedure that gave me back my sight, there are still questions that I too are looking for) what I do say is that it is high time that someone with more than just a cursory knowledge of medicine stepped up and showed wheter or not mine and the many other successful ARK patients are just freak results of a technique that desrves to be overlooked.
I think we have all but exausted each of our respective points, maybe its best to let things lay as they do and have people decide for themselves.
This is not a question of wether to have ARK or not. Its a question of being given the option to decide.
Hari
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Hari Navarro
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rosemary johnson
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Sajeev asked who used to do the induced-hydrops procedures, and whether I could supply names?
Goodness! This was decades and decades ago! - if not quite in the era of "the ark", or even the days of bloodletting and leeches, it was well before my time. I don't suppose there's anyone still alive who used to do that. But I gather it was commonly done at one time.
As to why it was given up: am tempted to say that anyone who's had 4 hydros wouldn't need to ask that question..... but more seriously: I presume because of its hit-and-miss nature. You never know with a "natural" hydrops how well it is going to clear up until it has - some people may well have scar tissue that strengthens or stiffens the cornea, but others will end up with lots of "opaque" scr tissue right across the field of vision and considerably worse vision than before, even if the cornea is much stiffer. And some will have no observable difference, other than having long periods of pain, worry, uncertainty, sensitive eyes, etc. And what happens when the KC does progress? - do you have to do it all over again every 10 years or so?
Personally - I've had 4 naturally. I'd rather not have any more, thanks....
I don't suppose lasers had anything to do with it..... I forget the date of invention of the laser, but I'm sure that inducing hydrops went out long before laser eye surgery came in (the latter well within my lifetime).
As regards medical attitudes: I think it is harsh on the medical profession to cast them all into a hostile or "anti" mould.
I certainly remember hearing Prof Buckley (then head of department at Moorfields Eye Hospital in London - he's now retired - answering questions at previous KC group conferences about , well, various elective techniques, including such thiings as "conventional" laser eye surgery and ARK/mini-ARK and others. He struck me as being well-read on the subjects - as well-read as anyone can be, in view of lack of published papers, as aforementioned on this thread, and he sounded very careful to be keeping an open mind. IIRR he said there were various obvious concerns (cutting into already thinned and damaged tissue, etc etc) and said this was..... counterintuitive, sall we say, though that's my word in precising his comments - but commented some people beleived they could get results and he was open to hearing more. Which doesn't sound like dismissing things out of hand.
Incidentally, as regards medics and research - it is not only a "moral" duty for our health professionals to keep up with developments in their field, it is now a legal requirement to do so, in the form of Continuing Professional Development (or Continuing Medical Education). But there is a balance to draw - all medics in this country at least are deluged with journals, brochures, papers, etc etc and invitations to conferences/seminars, symposia etc. Most if not all of them could easily do three full-time jobs of keeping up with everything. ANd most of them, even the specialists we see, will have more diseases than KC to keep up with. If they spent all their time reading and researching everything that is, may one day be, might possibly be, etc, relevant, they'd never have the time to see ay patients!!
There is a further factor here in that they have to be concerned also with the long-term. Hypothetically-speaking (no names, purely hypothetical at the moment) there might be a treatment that achieves truly wonderful results in the short term.... and might work for 10 years. ut in 20 years time, the person who had the treatment might be worse off than if they'd never had it done. NOw, some people might think that a good trade-off - perfect vision in their youth, at the expense of future years; others might not. The medics have to consider the longer-term (it is they or their successors who will be picking up the pieces in that 20 years time - and possibly getting sued by the 20-year older person regretting the course of action they underwent.
As regards Hari's piece of research paper: it makes quite a lot of sense to me! But it does (like, I suspect, much of such stuff) make for difficult reading in that it uses what are fairly common English words in unusual ways or less common senses. I suspect there is also a lot of spurious detail, put in for the sake of the more demanding of the scientific experts among the readership, which are not really necessary for our understanding. For example, does it really matter what 6% and 12% SPS-PAGE gels are? - I suspect not, unless we want to challenge whether the author(s) really did get their proteins separated correctly.
More to the point, for us, might be pointing out that a smaple size of 6 people with KC is not very many from which to draw any firm conclusions - particularly in view of the individual nature of KC (as experienced by the people who have it, at least!), the progressive nature of the condition, and the fact that the article (in the extract we see, at least) doesn't state how anvanced their KC was.
For example.
Linkned to what I wrote above about long-term outlooks, there's also a queston of differenes in perception or viewpoint - but I'll write another posting about that later.
Rosemary
Goodness! This was decades and decades ago! - if not quite in the era of "the ark", or even the days of bloodletting and leeches, it was well before my time. I don't suppose there's anyone still alive who used to do that. But I gather it was commonly done at one time.
As to why it was given up: am tempted to say that anyone who's had 4 hydros wouldn't need to ask that question..... but more seriously: I presume because of its hit-and-miss nature. You never know with a "natural" hydrops how well it is going to clear up until it has - some people may well have scar tissue that strengthens or stiffens the cornea, but others will end up with lots of "opaque" scr tissue right across the field of vision and considerably worse vision than before, even if the cornea is much stiffer. And some will have no observable difference, other than having long periods of pain, worry, uncertainty, sensitive eyes, etc. And what happens when the KC does progress? - do you have to do it all over again every 10 years or so?
Personally - I've had 4 naturally. I'd rather not have any more, thanks....
I don't suppose lasers had anything to do with it..... I forget the date of invention of the laser, but I'm sure that inducing hydrops went out long before laser eye surgery came in (the latter well within my lifetime).
As regards medical attitudes: I think it is harsh on the medical profession to cast them all into a hostile or "anti" mould.
I certainly remember hearing Prof Buckley (then head of department at Moorfields Eye Hospital in London - he's now retired - answering questions at previous KC group conferences about , well, various elective techniques, including such thiings as "conventional" laser eye surgery and ARK/mini-ARK and others. He struck me as being well-read on the subjects - as well-read as anyone can be, in view of lack of published papers, as aforementioned on this thread, and he sounded very careful to be keeping an open mind. IIRR he said there were various obvious concerns (cutting into already thinned and damaged tissue, etc etc) and said this was..... counterintuitive, sall we say, though that's my word in precising his comments - but commented some people beleived they could get results and he was open to hearing more. Which doesn't sound like dismissing things out of hand.
Incidentally, as regards medics and research - it is not only a "moral" duty for our health professionals to keep up with developments in their field, it is now a legal requirement to do so, in the form of Continuing Professional Development (or Continuing Medical Education). But there is a balance to draw - all medics in this country at least are deluged with journals, brochures, papers, etc etc and invitations to conferences/seminars, symposia etc. Most if not all of them could easily do three full-time jobs of keeping up with everything. ANd most of them, even the specialists we see, will have more diseases than KC to keep up with. If they spent all their time reading and researching everything that is, may one day be, might possibly be, etc, relevant, they'd never have the time to see ay patients!!
There is a further factor here in that they have to be concerned also with the long-term. Hypothetically-speaking (no names, purely hypothetical at the moment) there might be a treatment that achieves truly wonderful results in the short term.... and might work for 10 years. ut in 20 years time, the person who had the treatment might be worse off than if they'd never had it done. NOw, some people might think that a good trade-off - perfect vision in their youth, at the expense of future years; others might not. The medics have to consider the longer-term (it is they or their successors who will be picking up the pieces in that 20 years time - and possibly getting sued by the 20-year older person regretting the course of action they underwent.
As regards Hari's piece of research paper: it makes quite a lot of sense to me! But it does (like, I suspect, much of such stuff) make for difficult reading in that it uses what are fairly common English words in unusual ways or less common senses. I suspect there is also a lot of spurious detail, put in for the sake of the more demanding of the scientific experts among the readership, which are not really necessary for our understanding. For example, does it really matter what 6% and 12% SPS-PAGE gels are? - I suspect not, unless we want to challenge whether the author(s) really did get their proteins separated correctly.
More to the point, for us, might be pointing out that a smaple size of 6 people with KC is not very many from which to draw any firm conclusions - particularly in view of the individual nature of KC (as experienced by the people who have it, at least!), the progressive nature of the condition, and the fact that the article (in the extract we see, at least) doesn't state how anvanced their KC was.
For example.
Linkned to what I wrote above about long-term outlooks, there's also a queston of differenes in perception or viewpoint - but I'll write another posting about that later.
Rosemary
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Hari Navarro
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Thank you very much Rosemary your posting was very informative and hit many of the topics that its sometimes difficult to gain an opinion on.
The 'induced' hydrops procedure is one that I had never heard so ,again , all this is very interesting. My only comment would be that in the case of induced hydrops and also RK that was accidentally used on un-diagnosed Keratoconus sufferers ... that the incisions are for the most part random.
I know that in ARK's case a detailed 'map' is drawn up pre surgury that shows exactly where each incision is to be placed. This is derived from numerous topographic corneal maps and other patient specific details. The 'controlled' creation of scar tissue is I believe where experience and surgical skill distinguish between an acceptable or unacceptable result.
Personally I do not cast all medical professionals in an anti role. As you pointed out Rosemary there is a mountain of research and opinion out there on virtually every concieveable aspect of eye surgury... my point is that with our disease there is relatively little in the way of treatment option. So of every doctor that has ever been deemed 'expert' in the field of KC I only ask why it is that not one in 20 years has had their imagination sparked to the point of finding out more? Surely there has been those over the years that have in some fashion looked into this (I know of a surgeon who in recent months has contacted the Lombardi clinic) ... but what of their observations? If they indeed conclude that ARK is as it is portrayed, a contridiction to KC , then why not come out and publish a report that we can all draw from (even if said report was in the form of a posting on this forum). This Prof Buckley you speak of seems to embody the exact kind of open, enquireing mind that is required here... a shame he has retired.
To me long term results only sooth those who want to be soothed... the truth is that no one really knows how each individual case will turn out (long term PK results are also questioned in some quarters)... If I were to wait for a peer reviewed 20 year retrospective cast iron paper on ARK then I'd be an old man and (as you again pointed out) my years of being able to see my children grow etc would have long since passed.
The sample of research paper that I supplied was to point out that we (for the most part) are not qualified to FULLY understand the research papers that we are forced to decipher for ourselves online. As with the random report paragraph that I supplied it may indeed not be required to know what 'SPS-PAGE gels' are... but how are we the public to know either way?
We are forced into this situation regarding treatments and topics that are not covered in laymans terms by our respective doctors (as is the case with ARK). I personally dont want to have a self created half explaination of the topic... I want informed, experienced opinion.
If we look at Keratoconus as a finite, specialized section of medicine then this does not seem to much to ask. This is not a new procedure, it is not the new kid on the block... and unlike other newer procedures it already has a large community of ex patients.
The stand out problem here is again lack of data from the clinic itself. Reasons for this have already been covered... as we reach 20 years of ARK (the majority of which the procedures creator actively pushed to have his treatment accepted) we are now in a situation where he openly states if you want to learn then come to me (He may just have better things to do than shout into the ears of the deaf).
This is not the X-files with dark forces conspiring to bury new and innovative work and Prof. Lombardi is certainly no lily white beacon of hope tarnished by his uncaring peers.
He is a doctor and a man with a defined approuch that rubs the established up the wrong way. He does not slip easily into the pages of our textbooks... as with anything I think we need this kind of shakeup.
ARK is not for everyone but it does deserve far more than exclusion on the basis of unrelated reports and the set in stone contention that ALL surgury on an already thin cornea is a contridiction. ARK could very well be the innovative exception to the rule.
Thanks again Rosemary.
Regards,
Hari
The 'induced' hydrops procedure is one that I had never heard so ,again , all this is very interesting. My only comment would be that in the case of induced hydrops and also RK that was accidentally used on un-diagnosed Keratoconus sufferers ... that the incisions are for the most part random.
I know that in ARK's case a detailed 'map' is drawn up pre surgury that shows exactly where each incision is to be placed. This is derived from numerous topographic corneal maps and other patient specific details. The 'controlled' creation of scar tissue is I believe where experience and surgical skill distinguish between an acceptable or unacceptable result.
Personally I do not cast all medical professionals in an anti role. As you pointed out Rosemary there is a mountain of research and opinion out there on virtually every concieveable aspect of eye surgury... my point is that with our disease there is relatively little in the way of treatment option. So of every doctor that has ever been deemed 'expert' in the field of KC I only ask why it is that not one in 20 years has had their imagination sparked to the point of finding out more? Surely there has been those over the years that have in some fashion looked into this (I know of a surgeon who in recent months has contacted the Lombardi clinic) ... but what of their observations? If they indeed conclude that ARK is as it is portrayed, a contridiction to KC , then why not come out and publish a report that we can all draw from (even if said report was in the form of a posting on this forum). This Prof Buckley you speak of seems to embody the exact kind of open, enquireing mind that is required here... a shame he has retired.
To me long term results only sooth those who want to be soothed... the truth is that no one really knows how each individual case will turn out (long term PK results are also questioned in some quarters)... If I were to wait for a peer reviewed 20 year retrospective cast iron paper on ARK then I'd be an old man and (as you again pointed out) my years of being able to see my children grow etc would have long since passed.
The sample of research paper that I supplied was to point out that we (for the most part) are not qualified to FULLY understand the research papers that we are forced to decipher for ourselves online. As with the random report paragraph that I supplied it may indeed not be required to know what 'SPS-PAGE gels' are... but how are we the public to know either way?
We are forced into this situation regarding treatments and topics that are not covered in laymans terms by our respective doctors (as is the case with ARK). I personally dont want to have a self created half explaination of the topic... I want informed, experienced opinion.
If we look at Keratoconus as a finite, specialized section of medicine then this does not seem to much to ask. This is not a new procedure, it is not the new kid on the block... and unlike other newer procedures it already has a large community of ex patients.
The stand out problem here is again lack of data from the clinic itself. Reasons for this have already been covered... as we reach 20 years of ARK (the majority of which the procedures creator actively pushed to have his treatment accepted) we are now in a situation where he openly states if you want to learn then come to me (He may just have better things to do than shout into the ears of the deaf).
This is not the X-files with dark forces conspiring to bury new and innovative work and Prof. Lombardi is certainly no lily white beacon of hope tarnished by his uncaring peers.
He is a doctor and a man with a defined approuch that rubs the established up the wrong way. He does not slip easily into the pages of our textbooks... as with anything I think we need this kind of shakeup.
ARK is not for everyone but it does deserve far more than exclusion on the basis of unrelated reports and the set in stone contention that ALL surgury on an already thin cornea is a contridiction. ARK could very well be the innovative exception to the rule.
Thanks again Rosemary.
Regards,
Hari
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