Elective Treatments

[Sajeev]

Its been passed in varoius ethics committes around Europe and in the uk for the use in the uk.

The crosslinking equipment has been given the CE mark.

The non-epithelium method is not recommened by the developers of the original crosslinking, they don't beleive in it at all. And the method talked about here was talked about as if it was the one to do.

The long term results has passed in germany thats why other countries are now doing trails for themselfs and also opting to treat patients from the start.

As with intacs, miniark... crosslinking is best done at the early stages of KC... but with crosslinking studies prove that it stablise's the cornea keeping it from progressing. The earler the better, and its up to each patient in what treatment they would like to do from what's on offer. And they are all "let loose" on to the public!

There will be nay-sayers and scaremonger's from those who will not benifit from these treatments... but such is life!

[Hari Navarro]

What all of us have neglected to say is that these treatments pretty much require our vision to be corrected with glasses or more often contacts. The aim of the treatment is to provide a corneal surface that is easier to correct the vision.

This is not exactly true Gareth -- as in my case I havn't used any form of vision correction since my mini ARK operation almost two years ago. I know this to also be true of many of the other ARK patients that I have met or spoken with.
The aim of ARK at least is not to prepare the corneal surface for further trauma via contact lenses but rather to do away with lenses altogether.

And although I know very little about the subject of Crosslinking I do agree with what Sajeev has said. I have read that the version currently being promoted in the US does differ from the original.
I have also heard that the doctors using this technique are quoting German and European research data which can be misleading to prospective patients.

Again we see the need to get ALL the information out there. It is of no use to dismiss or neglect any of these treatments before fully researching them (I refer here to corneal and keratoconus specialists, our first port of call when looking for answers).
They must be fully informed and in turn have enough respect for our intellect to pass on this data.

Hari

[Sajeev]

Well said Hari, and also I wanted to wish you a good house warming party!!

[GarethB]

Thanks for your comments Hari.

I was just going on an e-mail that I received regarding the mini Ark.

Due to the way people try to take legal action against medical professionals if the pateint feels the outcome is unsatisfactory all treatmenst I have enquired about involving surgery have a get out clause stating 'The aim of the surgery is to provide a suitable surface whereby vision is easier to correct.'

It is excellent news to know that you now have excellent uncorrected vision 2 years on. 18 months or so post graft I went 5 years with 6/6 uncorrected vision.

Just for everyone who has been following my investigations as to weather C3R could be done on an eye post graft that has redeveloped KC which could also happen with mini-ark ahve now decided that it wuold be too risky.

A few months ago I did asjk about mini-ark based on your experience Hari and they too feel it would be too risky. Although they would not touch the graft itself, they do feel that with the stress induced to the eye there is an extremely small risk of causing a perfectly healthy graft to miss behave.

Just as well the eye has been stable for the past two years, so there is still hope that by the time I need further intervention, medicine has caught up and has a suitable treatment.

[Sajeev]

I think thats a great view to have Gareth... just wait and see... technology is catching up!

[Hari Navarro]

Thanks Gareth,
Its true Mini Ark has been very good to me, My worry at this stage is based in the lack of interest doctors are taking in the procedure. Its alright 5 or 10 years down the road for them to pop up and say 'I told you so'... but what about now? What about fully researching one of the few options that we have at our disposal? What about finding out if this is the contridiction they all say it is?
Your quote interested me:

A few months ago I did ask about mini-ark based on your experience Hari and they too feel it would be too risky. Although they would not touch the graft itself, they do feel that with the stress induced to the eye there is an extremely small risk of causing a perfectly healthy graft to miss behave.

I respect you taking the time to find out more but what data did they refer to to even say that there was a small risk to affecting a possible future graft?
The ENTIRE region containing the ARK incisions is removed pre PK, so how is it possible that they will affect the graft?
I think that the risk involved relates to surgical experience... very few are willing to step up to the plate and creatively control the formation of scar tissue. This is not a production line technique and no two patients are the same.
How is it possible that the Lombardi clinic has almost twenty years of experience in this technique yet so few have taken the time to even debunk it?
Not everyone who has had ARK is happy but then how could we expect this when the healing process is so complex... it is just another surgery. But it is one that has shown some very good results.
How can we say that we are fully armed in the fight against KC when we do not have access to all the weapons?
I appreciate your standpoint it just makes me mad sometimes when some people a so quick to dismiss... perhaps if they saw through our eyes for a week they would no be so quick to do so.
Regards,
Hari

[danlindley]

Wow!

There is so much to read and a lot of discussion.

I'm going to research some of these and discuss what i can go ahead with now to slow down and hopefully prevent the KC from worsening.

I was looking to obtaining my pilots license, and did wonder if KC could be correct sifficently to allow this. I have been told that some CAA medics would allow stigmatism, but because of the nature of KC, would have difficulty passig someone with KC.

Thanks all for the advice. I'm definately going to read more into this.

Dan

[Sajeev]

Another satisfied customer!

...And just wanted to add that out of over 1000 patients doing the orginal crosslinking since 1998, when it has been available from, no-none has needed a transplant!

[jayuk]

Hari

A question for you

Out of all the people over 20 years, how many have had Mini Ark and how many have had success / Failures?....Success Id measure as in obtaining satisfactory VA for a period of Id say 12 months?

When reading your well informed and intelligent posts; Ive always found that this is one treatment thats come to light that really has been ignored. I think in another post which you made, I had said that my only issue with this treatment was the fact that we were making incisions to an already thin cornea....however this was addressed by the scarring that was induced post treatment? Is that right?

I think that over the 20 year period; this treatment must have quality data available to present?....Unlike Grafts, etc.... barring C3R and DALKs, we pretty much are limited as to what we have available once we overstep the Medium range KC.....and in advanced KC we only really have Grafts and potentially the one your reffering to...as C3R does not work as effectively in advanced KC corneas for the very obvious reasons of high structure deform, etc

J

[Hari Navarro]

Hello Jay,
Your initial question is one that really is the thorn in the side of those of us that speak about Mini ARK. You see, the long term data that you ask about has not been published. The reasons for this are many and usually incur a separate debate of their own
As I see it Prof Lombardi and his mini ARK technique have been around for a great many years... up untill the late 90's he was a regular attendee and speaker at refractive surgery conferences the world over. Oppossition to ARK by the medical establishment had always been evident... if you have ever met the Professor you will see that he is not a man to be brushed off. This did not sit well with many and as time went on it became more of a clash of personalities than a debate on the scientific merit of the procedure.
So the up shot is that the long term results are for the most part anecdotal. I have seen case reports and met various patients over time on my visits to Rome but the stuggle has always been to get indepedent medical recognition.
Prof. Lombardi is many things but has self proclaimed that he intensely dislikes wading in paperwork, much prefering to attend to his patients and preform surgery. But he also acknowledges that this is his weakness, that public perception is based in flashy reports and colorful graphs.
He has released data over time but form many it is not enough. But he has stated that his clinic door is always open to anyone in the medical field that wishes to learn about ARK... like I said, the worry is that they are not exactly lining up to do so.
The success rate you speak of in my mind should reflect the patients ideal not the doctors.
Everyone has a diffrent expectation and there have been those whose expectations have not been met.
Its true that Mini ark as with cross-linking shows best results in its earlier stages... ARK is very much accessed on a patient by patient basis.
The VA of ex ARK patients is one that I too would like to know Fact is that post ARK many of the patients are not vocal so its difficult to gauge.
There are the cynic's that say this is because ARK patients are to ashamed to come forward... a more unlikely or ridiculus comment I have never heard.

To my mind even if ONE ark patient showed long term results then this should be enough for medicine to take a close look.
The following are the latest patient statistics supplied by the Lombardi clinic:

http://www.keratoconusinternational.com/arkoverview.htm

Regards,
Hari