Mini A.R.K.

[jboustany]

Hey I'm new to this board and just thought I'de join up because I might have something to offer. I'm 20 years old and was diagnosed with KC at 14. Its been a huge strain but of course you all are familiar with that. I live in America right now, and have been speaking with the Lombardi Clinic, http://www.lombardieyeclinic.com, for about a month. I am scheduled to go in for Mini A.R.K. surgery in both eyes in mid January. My hope is that both eyes will be rid of KC and return to 20/20 vision.
I'm not sure if this is a common procedure for KC but I cannot stand living with these contacts for my entire life, or waiting for corneal scarring to get the transplant. I just thought I'de post here now and once again when I'm out of surgery, even though it's a few months off. Any comments will also be appreciated.

[GarethB]

Welcome to the forum.

Please let us know about how you get on with this treatment.

It has stirred up a great deal of discussion on this board before and the only results shared have been more anecdotal rather than fact. So any fact based information and your own experience would be most welcome.

[jayuk]

jboustany

Welcome to the board.

This procedure has been performed on a numebr of individuals...with overall limited success from what I can gather......it has been controversial......and generally many of the leading opthamologists dont recommend this particular approach....primarily because your are cutting into an already thinning cornea..wth the hope of scarring aiding in the recovery.......which to me...just doesnt sound a good idea!.........however as always......we keep an open mind....and whilst the above is my own personal opinion.......I am sure there are a select few who would have a different opinion from experience.........but I would tend of errr on the side of caution on this particular treatment......until you can see the clinics pass success rate, and speak with people whom have had it done......

Jay

[GarethB]

I think the precurser to mini ARK stems back to when hydrops were induced into KC patients aftre some reported an improvement in vision after hydrops episodes.

The theory was the scarring would be smaller, clearer and so better for the patient if the hydrops were controled rather than the membrane rupturing at a later date when it was much weaker.

This technique fell out of favour because fo the hit and miss results along with improved lens technology and ways of improving lens comfort and of course improved technology making grafts more succesful.

[Hari Navarro]

Hi jboustany,
I am one of those select few that have had mini Ark and 'lived' to tell the tale.
My treatment was preformed at the Lombardi eye clinic over a year ago now... my eyesight is very good but I'm still noticing improvement. I dont use glasses or contact lenses and I live my life very close to the way I did pre-keratoconus.
The most common criticism of mini Ark raised by physicians is that there is little if any published scientific data to back up the claims made by its practitioner. The data is there. I've seen it... I sat in Prof Lombardi's office and had him go through it with me. I havn't seen it published in nicely bound medical journals or seen it presented with state of the art CGI but then I personally didn't need to.
In my opinion anecdotal benefits are often to easily dismissed... these are the testimonys of those who have stepped up to the plate and had ARK. Why is it that we hold so much faith in medical paperwork... if the FDA or some grand old hospital publishes a report are we all to breath easier knowing that the path ahead is that much clearer?
We have a multitude of peer reviewed reports that tell us that graft success rates for KC are as high as 96%... personally I would prefer to interview graft recipiants and ask for their 'anecdotal' responces than lay my faith at the feet of somebodys lab report.
Mini Ark research is a non-mainstream technique, this in itself can be intrinsically problematic because of a lack of research capital and also because of special problems inherent in developing the technique. It is difficult to do research in an area when you are working outside of the predominant hard core modalities. In this enviroment proof is not considered proof, seeing is not believing... words mean nothing, graphs and ten year retrospective studies do.
My arguement has always been that Ark is nothing more than an option, a surgical approuch that is shunned by many through ignorance of its true function.
Opticans reject the idea of ARK as it cuts into an already thin cornea yet they have little hesitation when instructing you to place a contact lens against this same compromised tissue on a daily basis. They sing the praises of corneal graft untill Intacs come along and then suddenly PK is shown in a slightly less than favorable light. You dont have to be a conspiracy theorist to see that politics are very much at play here.
It has been said that the sexiest word in eye surgury today is 'Laser'... traditional blade lead surgury is considered redundant.
I believe that surgical skill, especially in the case of mini Ark, cannot be standardized... this is not a cure all magic remedy. It is a procedure that has to contend with the variation presented by each individual case... some gain results quickly, others have to give it more time. Some are not happy with the result and some completely forget they even had KC in the first place.
This is a procedure that most doctors would prefer seen swept under the rug... its complexities worry them, the questions it presents are hard to answer... who amongst them would be prepared to devote their lives to learning a surgical skill that has to overcome these said variations? Much easier to dismiss it outright, much easier to spend a week at 'laser-camp'.
My truth is that I was not prepared to wait and see what if anything was slowly inching its way along the treatment pipeline... and even if I was why should I have faith in it when it arrived?
The accepted standard is 'peer review'... those who ride into town with a nontraditional idea are more often than not sidelined, and these peers we hear so much about become a group invested in supporting the status quo. Personally... that wasn't good enough for me.
Good luck and all the best,
Hari Navarro

[jboustany]

Thanks for all the concern guys, but my mind is set and I will be going in for surgery following winter break this upcoming January. The only problem is convincing my mom to pay for half of it.

[jayuk]

In that case good luck and let us know how it goes......

[Hari Navarro]

All the best for you decision... you have a few months up your sleeve to talk with other Mini Arker's and do your research. Educating yourself is key to deciding on any of the treatments on offer...
Good luck with convincing your mother, if she's anything like mine it will be no easy task

Regards,
Hari

[harrison]

Hello My Name is Brigitte I have a 15 year old son with Keratoconus and am researching all my options for treatment. He is quite advanced in his Left eye to the point of concern and they are looking at doing Cross linking with Epithelial off here in Canada. That really concerns me and I am investigating into the Mini ARC at the Lombari clinic. If you can provide any information and experience with this I would greatly appreciate it.

Kind regards,
Brigitte

[Andrew MacLean]

Briggite

As you can see from the sparse contributions to this string ARK and mini-ARK are not too common as treatments for keratoconus.

All the best with your enquiries.

Andrew