Mini A.R.K Database

[Hari Navarro]

Mike has been kind enough to allow us to read his experience with mini ark on my database.
Its an interesting and balanced read...
See the testimonials section.

http://www.miniarkdatabase.com

Hari

[Andrew MacLean]

Thanks for posting this Hari

Andrew

[Hari Navarro]

Hi Andrew,
Its actually very exciting for me to see the emergence of english speaking Mini Arker's-- Up untill now much of the information and patient feedback has either been in Italian or German. It has been a hard grind to make sence of how this treatment is evolving and more importantly what exactly the patient outcomes are.
I'm very impressed with the American patient, Mike's, attitude to his latest experiences.
It seems he's not setting out to denigrate any of the other accepted treatments - only to find his own way out of the KC jungle.
In saying that he has said, and I echo this sentiment, that he is convinced that contact lens wearage contributed to a worsening of his KC. He balances this by stateing that to his mind this is the trade-off that comes with improved contact corrected vision.
I have long been strongly against the notion of putting these slithers of plastic (no matter how gas permiable, against our diseased keratoconic cornea's)-- I feel that this trade-off that Mike talks of needs to be addressed and avoided at all costs.
It comes down to education-- How many KC patients that are fitted for RGP's are fully informed of the trade-off discision they are making?.
Sure they give us the chance to function within society- but at what cost?
I'm fully aware that this is a debated point- that many sing the praises of contact lenses and point to research articles that state that little actual damage is caused to the corneal surface.
But there is also a wealth of articles that suggest the opposite--
We are the meat in the sandwich, we are the ones that have to live with the outcome of RGP wear whatever that might be. And as such it is vital that new focus is placed on determining lens wear effects and also a determination to avoid their usage and develop other modalities.
Regards,
Hari

[jayuk]

Hari

I think the contact lens issue that you mentioned COULD be flawed....as in India and Trinidad there are literally 1000's of KC patients whom are living in remote parts whom do NOT wear lenses...however still have scarring and have had KC progress at alarming rate, of that of a similar westerner whom has been exposed to Contact Lens wear

Speaking with Contultants who do actually go to Africa out the goodness of there heart to treat and educate....you will get a clearer picture.....

But as you quite rightly say; what is the trade off?...What is the effec of the scarring induced by the Mini-Ark when compared against contact lens wear.......soooo many question sooo many unknowns!.....

Its a funni old game, this KC!

J

[Andrew MacLean]

Jay

I have heard that, too. Some ophthalmologists from Glasgow go to India and operate on KC patients on the sub continent who have never worn contact lenses, but whose corneas are in worse shape than mine!

Andrew

[Hari Navarro]

And this is where the true power of the internet is truelly realized-- Not so many years ago I would be totally alone in my search for information.
Please forward me the data that you refer to of the 1000's of keratoconus sufferers that have extensive corneal scarring (without contact lens wear) -- The fact that their corneal damage is worse than ours is truelly cause for alarm.
What is it that is provoking this scarring? Why is it that a population that does nothing to correct its KC is worse off than us?
Scarring is scarring it is not a spontanious event-- We have statements that clearly state that contact lens wear is detrimental to corneal health-- but that it is necessary in some instances to provide a level of quality of life.
Why is it that people shy away from the notion--

Hari

[John Smith]

This is pure conjecture on my part, but think of an aluminumum saucepan and a quantity of salty water.

Now, you'd think that the saucepan would survive for longer without the water. After all, the water will start to corrode the pan, forming rust. You can imagine the pan to be a cornea and the water is a "nasty" contact lens which causes scarring.

Now take an identical pan, and put it on the gas ring. Result: one melted saucepan . Add the water though first, and the water is protecting the pan by preventing it from exceeding 100 degrees C. A nice, safe temperature for a saucepan.

The moral here: just because something sounds intuitive, doesn't mean it's true. Sometimes the exact opposite is.

Could it be that the RGP lens is actually acting as a mould, preventing some of the cone formation, and thus scarring?

As I say, just a wild guess, but...

[jayuk]

Hari

As part of your research I would suggest that you speak with those Opthamologist who dedicate times from their lives and actually, from the goodness of there heart, go to places like Africa, Ehtiopia, India, Pakistan, Trinidad, Somalia etc

These very people will say the same. The mass amounts of KC they see there, and the fact that none have been exposed to Lenses, seems to defy what alot of the "new age" Optical enthusiast say! Sadly. there is no evidence in this aside from first hand Opthamologist feedback. But to me, this is higher quality evidence than to read some obscure research paper from someone who doesnt have a grasp of the issue........More importantly, collating this data requires money, which these people dont have. Research and grants is whats needed to do these kinds of studies; and without a commercial gain you will find that not many entities within the Private sector will be willing to fund such activities.

This is one the reasons why we dont have alot of data on these issues. All we can do is use a little inteliigence, initiative, dilligence and common sense and approach those who offer there skills in the lesser established countries.

John - I liked your example!!.

My thoughts on this issue are that Yes contact lens wear DOES negatively effect the cornea, however I beleive that that trade off between weasring them (and potentially getting your life back) and not wearing them is extremely thin. HOWEVER, Id also add that IF a contact lens is NOT correctly fit on the cornea this can be FAR more worse than not wearing one at all.....now this latter issue is what effects us all.....Incorrect Fitting of contact lenses!......and is the bigger issue

With regards to the scarring, my thoughts on this are that as the structure of the cornea changes and the cone like effect becomes more prominent; the surface area of the cornea is trying to occupy the same amount of space; and thus to do so; cells are being pushed around into tighter spaces whilst the lower layer cells are degenerating.

Jay

[jayuk]

Andrew

Completely agree; I am led to beleive that India has one of the highest rates of KC occurances.....thus its either environmental or its genetic!....I guess MEH's research on KC and Genetics may shed some light on this issue.

J

[Andrew MacLean]

Actually, Jay, I think that the Indian Sub Continent has a high occurrence of all sorts of different eye conditions.

I have not yet been convinced by any of the claims that have been made to discoveries of a genetic link in the development of KC, although I look forward to seeing the emerging epidemeology. I have an open mind.

The problem with genetics is that it is too easy to shrug and say that if it is genetic then there is nothing that can be done! This leads to an abandonment, or reduction, of the effort to discover environmental co-factors.

On the impact of contact lenses on the cornea I was always told that there was a potential risk in wearing them, but with no surgical intervention yet able to guarantee a successful outcome I took the view that it made sense to continue to wear lenses until they became either impossible or useless.

All I can say is that, for the time I was able to wear them, contact lenses were good for me!

Now that I can't, open sky, penetrative surgery has been good for me, also.

Of course I wish folk like Hari well with their involvement or potential involvement in experimental approaches, as indeed I wish everyone who tries Mini ARK or C3R or DALK or any of the other alternatives well with their outcomes.

Andrew