UK Keratoconus Self-Help and Support Association

I have been a member of this forum for some time but have waited until now to actually post.
The reason for this is because I underwent the Mini A.R.K procedure to correct my keratoconus - this was not a popular decision with many and as such I felt no need to distrupt this site. Also I wanted to wait and evaluate my results before suggesting it as a possible alternative treatment.
There will be some members here who will know of the heated debate that this has caused in the past, and it this that has prevented me from posting until now.
It has been over a year now since my initial operation and my results have been very pleasing. For years the procedure has been used solely withen Italy, where it was first developed and subsequently refined. Recent years has seen it expand to Germany and now english speaking countrys.
As with any other operation the results have been various, each patient bringing his own brand of KC to the treatment.
There is still an obstanent opposition from withen the medical establishment to the very mention of its name. But as it is becoming more prevalent some of the myths and misconceptions are being more closely examined (Not just brushed aside).
It is now to be used in conjunction with developing cross-linking technologies and with this hopefully a new era of understanding will evolve.
I have set up a database into which I am collecting Mini A.R.K related data, its purpose is to inform those who are interested. Those whom are purhaps not happy with the standard modalities with which they are presented.
It has already been mis-understood to be a platform for the treatments founder to promote his surgery. This is not the case, I have funded, built and maintained the site completely independantly (In many cases this shows!! I'm no professional) The information contained withen in it is in some cases dated but this is, as I said, a database. And as such is is intended to be added to as relevant information comes to hand.
This is difficult at times as the doctors that perform the operation have little chance of getting their work published. There has been some publication, but many are still wary of the base principles involved, priciples that are deemed a contridiction to the weakened Keratoconic cornea.
It is also no easy task to get people to post their details, but this is only a very young site and I hope it will grow in time.
I see that Mr. Ken Pullum's Mini A.R.K disclaimer is still present on your homepage. I have read his words and also other things he's said on the net. He gives a very balanced approuch, even though his business is based withen contact lens wear. My only thought is that this may taint members perceptions of ARK and disuade them from seeking out more information. Actually the reverse is true in my case as it was this disclaimer that added to my interest and lead me to Rome, and Mini A.r.k in the first place.
It is offered as an option to be considered, nothing more.
Regards,
Hari Navarro
http://www.miniarkdatabase.com

Hari

Thank you for your post. I have been intrigued by the ocasional mentions of ARK (Asymmetrical Radial Keratotomy), Mini A.R.K. and the today up-graded A.M.K. (Asymmetric Microsurgery for Keratoconus).

Some sites suggest that after a 10 year follow up results like 85% of Keratoconus regression, 10% Keratoconus stabilization.

I have nothing but respect and admiration for KC sufferers who go into experimental procedures, with the potential they hold for either wonderful success or disheartening failure.

At their most optimistic, supporters of A.R.K. seem to bubble over with enthusiasm, quoting 85% regression, while others strike a more cautious note.

In truth the way in which we will know for sure is for people to put their sight into the hands of the experimental technique and report on the outcome.

You may have followed also the posts on C3R.

All the best. Please do keep us posted on your progress, sharing the highs and the lows. It may be that A.R.K. will be offered to more and more of us.

Well done, and thank you for going boldly!

Andrew

PS Is your database on line? do you have the URL? andrew

Very briefly, what is this ? The treatment.

Andrew, the url is at the end of his post. Nice site, lots of work put into that one!

As I understand this treatment leaves the corna with its diseased material and tries to correct this. How does the disease disappear then? Imagine you get this treatment at 30, with an ok vision until 50-60. And then beeing forced into a graft. Well, I know to little about this.

It seems to have been developed first for mild myopia and then for astigmatism. Professor Lombardi developed the technique as a treatment for KC.

Encyclopedia Britannica describes the procedure in these terms:

"... A series of 4 to 8 equally spaced deep cuts are made in the peripheral cornea, leaving the central cornea above the pupil clear. Intraocular pressure then pushes the weakened central cornea outward, flattening it and modifying its refractive power. Wound contraction during healing also affects corneal curvature by exerting radial tension on the uncut area.

Radial keratotomy improves visual acuity to a modest extent, enabling some people with low-level myopia to see well without the aid of spectacles or contact lenses. The procedure has been somewhat controversial, however, because the degree of improvement is unpredictable, depending in part on individual healing rate. Some people who have undergone surgery still require corrective lenses. The procedure is irreversible and may leave extensive scars on the cornea, causing glare in bright light and possibly interfering with the wearing of contact lenses (in cases of continued myopia).

Because repeated operations to correct residual defects may be effective in some cases and do not seem to increase the complications of the initial procedure, some surgeons have suggested that the operation be performed in stages until optimal visual correction can be achieved, but this view is not widely accepted. The improvement in vision that may occur with additional operations must be weighed against increased corneal scarring." Quote ends

Andrew

Hari

Its really good to see you post here! I lost alot of your experience with the Mini Ark as you seemed to only post on a board whose owner I can only describe as an oddity !

Anyway, I am suspecting that your post was further to a mentioning of the cornea wedge resection?..If not, its good to get your experience on this procedure! I agree with Andrew; that any KC sufferer that does use there initiative and explore other treatments with dilligence does command an element of respect!; and I think you are on top of that list!

I think there are a number of issues with Mini Ark and I would summarise as follows

a) the impact of creating strategic incisions on an already thin cornea

b) the "suck em and see" approach on HOW this will affect the corneal surface

c) the lack of evidence presented to the relevant "bodies" of the Eye world

I am sure that many of teh above can be answered; but from speaking to people over the past few years on this; a common criticism is that outlined in a) above.

I would doubt that you would get any criticism from the KC sufferers on this board, whether its a PK, DALK, DLEK, C3R, Mini Arc, etc....its all a step further in the right direction of exploring treatments!

Have you any info on your KC Before the treatment (stage, VA, etc) and after?

Jay

Thank you all for your interest-- I'm afraid I'm a bit pressed for time at the moment. We have a wedding in the family and things are a little hectic!!
It's very pleasing to see that people here have such an open approuch to new options. In my experience this has not always been the case.
Most of your queries can be answered by reading the diffrent sections of my site. Remember though that it is still very new--
I'm to visit Prof. Lombardi in the near future for a check up, at this time I hope to be able to add new, updated information.
I will try and answer your questions more fully after the weekend-- But what I'd say in advance is that I'm in no way a scientific man, certainly not a doctor, my approuch has always been based on the results that I've seen from other patients. My wife is italian so this has been a godsend when contacting and speaking with other mini-arkers. I think the language devide has played a big part in mystifying Mini ARK.
This is one of the main reasons I have created the database-- So as to put the information out there in its translated form.
My stance has always been that information is key to us finding our own personal way out from underneath Keratoconus. And that in many cases the flow of information is impeeded.
Best regards,
Hari

Hari

All I can say to your second post is "You've posted at the right place then!"

I dont think anyone can push any treatment for KC as the Norm! We are all different and KC is never the same! Bit like DNA!!

Some may be suited for C3R, some maybe suited for Sclerals, etc etc!....but what one cant do is just discredit treatments for ludicrus unintelligent reasons as is done on across various sources!

Look forward to your posts!

Jay

Hari

I hope all went well with your family event!

I agree entirely with Jay. This is a good place to post, and it is by sharing your esperience that you help us all improve our awareness of potential treatments and their potential costs and benefits.

All the best.

I look forward to reading more.

Andrew

Thanks for the Welcome-- I'm in the process of getting more details together but I've been in contact with what I believe is the first American mini ark patient (maybe some here have already heard of his experiences).
His name is Mike and he underwent the procedure at prof. Lombardi's clinic approx. a month ago-- I think this will be a very interesting test case as the technique is given added exposure.
As of now he is very happy with the outcome-- speaking from experience I would expect him to go through a period of ajustment as the scar tissue forms and the cornea strengthens. The process is one that requires patience to reach a final result.
I'll keep you informed,
Regards,
Hari
ps: thank you, yes the family wedding went of without a hitch-- apart from a nasty headache the following day