Mini A.R.K Database

[Andrew MacLean]

There is of course another question that comes into play prior to an informed consent: that is the consequence of failure.

There may be a small chance of my being killed in an aeroplane crash, but I also need to know, what are the chances of my surviving a crash.

If the failure of any procedure is 100% loss of sight, then even if the chances of this catastrophy are only 4 per thousand, then I'd be more wary than a failure rate of 50 per cent where this meant no more than a mild irritation or a day or two off work.

Don't know how helpful this is to Hari, but I hope things are becoming a little clearer

Andrew

[Hari Navarro]

I think we are getting ourselve tangled up in definitions here.
The point still remains that we are marketed a 96% success rate across the board. It dosn't matter if the number is a factual reflexion of the true amount, the issue is that it is not contested. We all here seem to agree that it isn't factual so why are we not asking for a review of the practice? It worrys me that our community for the most part is nonchalant toward the issue.
I have always placed public education at the forefront of my personal KC research.
We need to have a playing field that gives us the facts as close as they can be found to the truth. The truth, is of course, a subjective opinion - but in this case statistics are being used as billboards.
Most here know enough about KC to be able to make comparissions. But there are those out there that do not have access to the same pools of information that we do. They will come into KC and following the initial shock of diagnosis diligently follow whatever course they are prescribed.
I denigrate nobody by saying this as I classed myself in the same situation when I first discovered I had this disease.
I do not know if in every instance there is bad intent behind its use - All I know is it is there and it shouldn't be. We deserve better.

Hari

[GarethB]

Hari,

Making comparisons is very hard as the procedures for managing/correcting KC are so very different.

The same goes for any medical condition.

An example where a comparison can be made is asthema, which inhaler is the best, the treatment is the same.

If however you compared inhalers, acupuncture, homeopethy, then all are distinctly different and hard to compare.

Your site is very informative and allows anyone considering PK to make an informed choice.

Jays post about C3R again help people make an informed choice.

This site helps make an informed choice regarding lenses and grafts.

I think this board and links to helpful information goes along way to giving that level playing field.

Facts and figures are hard to dispute when not enough information is available to fully appreciate how they were determined.

Yes we have got tangled in definiions, but still a useful discussion.

As with all KC treatments I will be following with ineterest and I look forward to hearing the feedback from those who have taken part in new procedures as I do those who have had the more recognised treatments.

Patients sharing experiences are to some extent less biased than those froma professional.

[jayuk]

Hari

I think you are missing the point to some extent...."we" have limited power to ask for a review of this practice!..The whole PK and KC Cure has developed over the years and I would suspect some wise guy decided to do some obscure study From then on I would suspect that this figure was quoted and spread like a wild fire.......

All we can do, as mentioned few times before, is to make information and experience available and do our best to help others that come to such boards......

There are also a number of other issues in this "review" approach which essentially will involve questioning peoples ability and practice; and to some extents integrity. That, to me, is not the best way to approach this..........I am a firm beleive in Knowledge is Power......and in areas of Medicine and Surgery...patients can use Information and Experience as tactical ammunition to question there medical team/personnel

J

[Andrew MacLean]

Jay is right, so is Gareth

We can put pressure on politicians, we can challenge the scientific community and we can read the journals.

We can be in touch with Ethics committees. We do all these things, but no practitioner has ever offered me anything so crass as a claim of a 96% success for any procedure. If he did, I'd immediately challenge the claim, ask what were his indicators of success and what are his indicators for the procedure.

Part of the basis on which I'd be confident to make the challenge is the information I derive from this site, and the signposts that people like you put up to new procedures.

The whole point about this forum is that it empowers us all to ask the challenging questions and once we are satisfied to make informed choices and give informed consent to any procedure that clinicians may suggest.

But in this we need to remember that the clinician is also, often, trying to sell his idea over against the ideas of other people. That then becomes part of the infomation environment in which our decisions are being made.

I do not think that the little diversion was inappropriate; it all helps with this process of empowerment. Meantime it has to be our hope that the inner dynamics of the scientific community will force any sham claims into the open. Actually I think that one of the things about which we can be confident is that the scientific community will always strive to expose bogus science.

Yours aye

Andrew

[Hari Navarro]

Hi everyone,
It seems we will have to agree to disagree--
If it was a 96% successful cancer cure that was being promoted as wide spread as this people would be all over the ethics committees. Why is the Keratoconus community so different?
But this % issue is only a part of the problem of restricted information flow.
I commend you for your sites open policy and I totally agree that it is just places like this that patients will gain their fullest understanding of the disease.
My contention is that it shouldn't have to be this way.
I shouldn't have to scratch through the internet finding bits and pieces of data. Medical establishments, media sources and practitoners have to be made accountable for the line of information they afford us.
This is not an anti doctor statement its an anti policy statement.
The American model is a perfect example of how finance and in some cases product placement are burying the best available treatments.
I am not American but my inbox is full of US Keratoconus patients that are left out in the cold by healthcare restrictions.
My point is it is not as simple as nice people in white coats doing good things. The dynamic is intricate and it seems that even in our part of the world the patients needs are on a sliding scale.
Doctor skill has to also be brought into question in the modern world-- are we being pushed toward a certain procedure partially because it is realitively simple to administer (they dont call it the cookie cutter technique for nothing). Dont get me wrong a good RK surgeon is a godsend and there is an art to the procedure. But are more complex surgurys falling by the way due to the skill required to perform them?
We see this happening in mainstream medicine already where laparoscopic surgery is passed over for the more tradional. Whats the best for the patient? Why arn't they getting it?
I know a great many Kcer's have fantastic dedecated surgeons but my concern is that as a whole the message is not getting out.
When I was first diagnosed about 6 years ago I was told that I was on the three step method to graft. Glasses - Rgp's - PK.
I asked about alternatives and was told that there wernt any-- end of story.
I know of people today that are told exactly the same thing-- whats changed?
How many specialists would today send me off for Mini ark or suggest Crosslinking? How many know as much about it as you guys? This is their job it isnt ours.
Sorry to ramble off the point, but it frustrates me when for instance I hear of a distant friend of my family that has just had her second unsuccesful graft.
She had been to a leading corneal specialist in her city and he'd told her that NO other treatments existed. She wasn't given the option of choice.
This is professional arrogance at the expense of our sight-- just makes me angry that all.
Regards,
Hari
ps. Ok I've stopped rambling now, I think this thread has taken about as much as it can
By the way I liked the David Hassellhoff analogy

[Andrew MacLean]

Agreeing to disagree is not a bad place to be.

By the way, Mini Ark is not uncontroversial as a treatment for KC. I am grateful to you for the information you have put in the public arena and made available to us through your site, but having reviewd much of the literature I am not as sanguine as you about the prospects for successful long term outcomes.

Anecdotes and testimonials play an important part in the development of patient confidence, but they need also to be backed up by hard science, accumulated data and rigorous statistical analysis.

Andrew

[jayuk]

Hari

I think its excellent that you did ramble and make your points; and aired your concerns.....as its the replies and the information that is entered thereafter that aids in getting this very message out there!....So you have just been an extremely useful tool in sending out the message

I do agree with you; and cringe when others are basically told that a PK is required! Hell even a search on this site over the past 4 weeks will show at least 2 sufferers whom have barely tried contact lenses being pushed for Grafts. This is totally wrong!!!..... But its something we have to tackle in a number of ways!........It just seems that many dont adhere to "PK is the FINAL option" and I beleive thats where these issues are arising.....what is FINAL......how do we know we have reached the end of the road with KC?......

J

[GarethB]

I think one of the issues is 'long term success'

It is now becom ing apparant that there are a good many grafts that although medically succesful are causing patients problems post 10 - 20 years. If you have the graft in your 50 - 60's is this an issue? If like me the graft was in your late teens, then certainly it is.

C3R from the available data is showing good post op successe, but the longest term data is 4 years post op.

Mini Ark does not have this data yet, but I could be wrong.

Hari, I am very grateful for what you have posted and it has helped to put some things into perspective.

For me, being a research chemist for a drug company I will always challenge results even my own. The more the data of any research is challenged and the better it stands up to such scrutiny the better the research that was done.

[John Smith]

By the way, Mini Ark is not uncontroversial as a treatment for KC.

Absolutely. I'm a fence-sitter on this one, and I thank Hari very much for his postings. Andrew's comment reminded me of the anti-ARK point of view put up by Ken Pullum a couple of years ago.

Read Ken's post here.