UK Keratoconus Self-Help and Support Association

Hi all,
Some six months ago Mike became the first patient from the United States to undergo mini ARK to treat his Keratoconus. He has posted his experiences from the beginning and his latest report can be read here:

http://www.keratoconusinternational.com/phpBB2/viewtopic.php?t=179

Hari Navarro

Hari

Good link! Very interesting read!

What were his "stats" before and after? Any topo's?

Jay

Mike has his topos and pics linked from the Keratoconics yahoo support group.

Not sure what the direct link is...

Hari

Is it just me or is it just plain weird that this kind of 'non mainstream' treatment is so neglected? I mean we have people waiting for grafts... being fitted for countless lenses but when a possible alternative comes along it's not like theres a stampeed to find out more. Arent we all watching the clock waiting for the day when relief from KC will arrive?
Mike posts his experiences on another forum and his words are buried under subsequent posts with little more than a passing 'good luck' gesture. I respect that each of us makes a personal decision regarding treatment but isn't the widest treatment base in everyones best interest?
Mini Ark deserves more than the 'shrill' stamp of approval of those who have had it... I believe it warrants closer attention by those who dismiss it out of hand. We all deserve to have the best treatment available not just the most fashionable.

Hari

Hi Hari,

I see you run two websites largely devoted to mini ARK so it's obviously something to which you're very committed. Apart from your sites I haven't been able to find much about it elsewhere. The majority of articles quoted on both your websites seem to be from the same source of Prof. Lombardi who offers the technique in Italy. I notice some of the articles on the website for Prof. Lombardi's clinic are written by you.

I noticed that the Italian Professional Medical Association of Ophthalmologists acknowledge Mini A.R.K. as a valid method of treatment in the early stages of keratoconus. So it would appear to be more a possible alternative to contact lenses rather than in circumstances that would warrant a corneal graft.

I'd certainly meet you halfway: it's important to be open-minded about new techniques but equally important that surgeons are questioning and conservative when dealing with something as precious as sight. I wouldn't wish my consultant to undertake any procedure on my eyes in which he had less than total confidence.

If this technique is a promising as Prof Lombardi believes I'm sure it will be used. As they say, "Build a better mousetrap and the world will beat a path to your door" (Ralph Waldo Emerson).

By the way, where are you? I see you use the Italian flag here but on your website gives your nationality as New Zealander. The whois database gives your address as both Motril in Spain and Salobrena in Spain.

Hi Barney,
Its a good thing that in this day and age I am not in the witness protection program... as it seems that now we can all be tracked by the internet

To answer your last question first I am now living in Sanremo, Italy... I was born and raised in New Zealand but have spent many years in Europe. For the previous three I have been living in Motril (Salobrena), Spain but now as I said I have settled in Italy.

I set up http://www.miniarkdatabase.com shortly after I had the operation. It was a very amateur attempt at both web design and presenting information. I did it solely to gather the limited resource material related to mini ARK into one place and also as a reminder of the data I considered prior to visiting Rome.

The second site you speak of... http://www.keratoconusinternational.com is not at all exclusive to mini ark. It seeks to develop an in depth discussion forum on ALL of the treatments we have at hand. Its main goal is to create a space where KC sufferers who do not speak english can attempt to commicate and pass information between languages.
It also is intended to not shy away from discussing if the traditional treatments that we all use to combat KC are indeed in our best interests or if they too possibly contribute to the condition.
It is not about denegrating any treatment but rather seeing each one for what it is... not perhaps as they are sometimes portrayed in the popular media. This is not to say that all grafts or all lenses are bad but rather that we all need to shake the tree sometimes to reach for the best possible treatment available.

It is very true as you said that the majority of the articles available on ARK are authored by Prof. Lombardi... this is an unfortunate consequence of him being one of very few doctors that use the technique. It has been discussed before here that the 'peer review' sector has shown little interest in examining a procedure that is widely seen as outdated.
I do have one article on the Lombardi website but it has merely been copied from my miniarkdatabase site. It is nothing more than the opinion of an ex mini ark patient... there are other patients who also have written their views.

I noticed that the Italian Professional Medical Association of Ophthalmologists acknowledge Mini A.R.K. as a valid method of treatment in the early stages of keratoconus. So it would appear to be more a possible alternative to contact lenses rather than in circumstances that would warrant a corneal graft.

This is true, but again, why are we not offered ARK in place of years of cleaning, losing and fitting rigid hard lenses against our already weakened keratoconic cornea? This has always been my point... As far as I'm concerned I do not have KC anymore... I do not in anyway recieve any financial aid to discuss mini ark... All I'm interested in is that KC patients find access to as much data as possible before making a personal informed choice. I do not care which treatment is chosen so long as it is chosen with all the options on the table.

If as you say there is a possibility that ARK can become a possible alternative to RGP's then where are the doctors falling over themselves to see if it is indeed a valid procedure?

If this technique is a promising as Prof Lombardi believes I'm sure it will be used.

I sadly do not believe this is true... mini ark has been around for nearly 20 years and it is still no closer to general acceptance. It will take a major change in the way that incisional corneal surgury is viewed for anyone to step forward and endorse ARK.

The upshot is that it angers me that treatments are dismissed without even cursory investigation. I'm not talking about a state sponsored full technical study (Although that would be nice) I'm talking about doctors getting together, like we do here, and saying 'This looks to good to be true... maybe I'll dig a little deeper'.

Regards,
Hari

Hi Hari, this is obviously a technique that worked well for you.

Hari Navarro wrote:It also is intended to not shy away from discussing if the traditional treatments that we all use to combat KC are indeed in our best interests or if they too possibly contribute to the condition.

The other day there was a discussion here about the possibility that extended use of contact lenses could trigger KC. This possibility seems to be widely accepted elsewhere but for some reason not in the UK. One explanation might be that consultants here are overly anxious about offending the contact lens industry but there could equally well be others.

Similarly we should look for explanations of why the technique that Prof Lombardi advocates doesn’t have widespread acceptance. I understand it is a very quick technique taking only a few minutes and doesn’t require donor material. Do you know of any explanation other than that it isn’t seen as appropriate by the majority of eye surgeons? It could certainly be financially rewarding to surgeons who offered the technique if it is as reliable as suggested. There hasn't been any similar reluctance to accept the newer technique of DALK.

In Prof. Lombardi’s native Italy, the IPMAO regard it as a valid treatment but only in the early stages of KC. Could that be seen as the problem? Presumably there’s no point in surgically correcting the shape of a cornea unless the cornea shape has reached a point where it is stable. The technique would seem to have limited if any affect on the thickness of the cornea which is the underlying problem of KC and may even increase instability.

The entrepreneur, Alan Sugar, has famously said that when he is brought a money-spinning scheme his first question is “OK, but tell me about the downsideâ€Â

These is a very interesting discussion. My questions are as follows:

1.I understand that in keratoconus the cornea also suffers from scratches in addition to the the the cone. How are these cured by this treatment?

2.What is regarded as the early stages of keratoconus?


3. Do any other surgeons use this technique? e.g in East European countries?

Thanks and regards

Mike

Hi guys,
Sorry I've been away and havn't been following the postings here as intently as I have in the past.

I personally feel that the reluctence toward even considering mini ARk as a possible alternative treatment has a number of reasons.

Firstly there is the 'set in concrete' mentality that ANY incision into already compromissed corneal tissue is a contridiction to KC (This has the tendency to shut down any further discussion on the topic before it even starts)...

secondly mini ARK is seen as a 'been there done that didnt like the results' treatment even though it differs from the original RK treatment from which it was derived... (often RK negative results are quoted as evidence that mini ARK is not effective).

Finally it is not a 'standardized' treatment, it is one that requires the surgeon to spend the time and effort to apply the technique specifically to a given patient... ie: it is not a production line technique.

It is the main contention of mini ARK that it actually increases corneal thickness (through the influx of fibrin associated with scar tissue formation)...

Personally all I would ask is that someone steps up and takes the time to review ARK (ie: travel to Rome or correspond with ARK's creator with the intention of telling us all one way or the other exactly what ARK has to offer)...

How can it possibly be good enough that within the restricted treatment option base we have that ANY possible treatment is dismissed without full review?
Even in an unofficial capacity surely there is some 'professional' out there that has had his or her interest spiked? It cannot be that it is only the patients that have the burning desire to find out more.
Surely if this kind of review was to come about then the upsides and downsides would be discussed and we would all be the better for it.

I also totally missed the discussion regarding contact lens effect on KC... a very interesting read.

There is only one other surgeon who uses the exact mini ARk technique but there are others that use mini RK in various forms to treat Keratoconus. These doctors are almost exclusively to be found in italy.

Also mini ark is not a cure and has never been stated as such by its creator... but it has been said that it is best used when the patient is in early stage KC ie: pre stage III.
But again each patient is different and has to be considered by the surgeon via a number of different contributing factors.

Regards,
Hari