Hi Scaistar,
I have been reading the results that have been posted here regarding corneal graft survival rates (Australian corneal graft registry).
The following is an extract from a study published at the end of last year:

Penetrating Keratoplasty for Keratoconus: Long-Term Results.

'Although penetrating keratoplasty appears very successful with an overall 1-year survival rate as high as 90%, the overall success rate progressively diminishes at 5 years and 10 years.
The leading causes of corneal transplant failure are allograft rejection and endothelial decompensation. The endothelial cell density decreases after penetrating keratoplasty, especially in the first postoperative year...

Penetrating keratoplasty is generally considered to be a successful procedure, and the graft clarity rate in keratoconic patients can be as high as 97% at 4 years.
However, although numerous studies have provided information on visual acuity and refraction following penetrating keratoplasty, we are not
aware of any study of endothelial cell count over 10 years after
PK for keratoconus'.

'Analyzing survival curves according to indication revealed that a plateau was reached in nonendothelial diseases but not in endothelial conditions, particularly pseudophakic keratoplasties. Lowdensity grafts probably lose their transparency as a result of age-related physiological degeneration. There is no absolute limit of endothelial cell count for decompensation after
penetrating keratoplasty'.

'Our results are similar to those of Zacks, Kus, and Abbott, who assessed long-term changes in clear grafts up to 33 years after penetrating keratoplasty.
These authors concluded that the rate of change was independent of donor age, preoperative diagnosis, or graft longevity'.

'Our study also reflects the bias inherent in Abbott’s retrospective study, where the participants were selected only for the clarity of their grafts, and Zacks’s study, where patients were lost to follow-up'.

'After penetrating keratoplasty, there is a rapid component of the cell loss,
becoming negligible only after 4 years and reflecting severe surgical trauma and postoperative complications, including cell-mediated immunologic reactions and an underlying slow component of the loss, although substantially higher than in nondiseased eyes.
They assume that if the critical density is taken to be 500 cells/mm2, corneas with initial cell densities lower than 2000 cells/mm2 could reach the critical density in less than 20 years. With initial densities above 2500 cells/mm2, the grafts should remain functioning for at least 30 years.
We would like to emphasize that 7 out of 16 grafts (44%) had cell counts less than 700 cells/mm2, which some corneal specialists consider the critical limit for corneal decompensation'.

'Specular microscopic studies have suggested that little, if any, cell migration occurs across the graft–host junction in humans. Therefore, we have to transplant a sufficient number of viable endothelial cells to guarantee a clear cornea transplant for the rest of the recipient’s life.
What number is sufficient? Presumably cell counts below 300 cells/mm2 are not adequate to keep the cornea clear. It may be concluded
that cell counts between 300 and 500 cells/mm2 are rather tenuous.
Those with cell counts from 500 to 1000 cells/mm2 should be considered at risk for decompensation from any surgical trauma. Cell counts of over 1000 cells/mm2 are less risky but may still be susceptible, and problems may arise in stressful conditions, such as contact lens wear for correction of astigmatism.

'Although this study was a retrospective review, it does provide long-term data (10-year follow-up) about the endothelial cell count, morphology, and corneal topography in keratoconus patients who have undergone PKP'.


Conclusions: Endothelial cell count 10-17 years post-PKP for keratoconus is very low with pleomorphism and viable grafts, indicating continued endothelial instability.
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It would be of interest to see a study on exactly how informed graft recipiants are... How many for instance have been instructed on exactly what an Endothelial cell count is?

Hari

Full article:
[/url]http://www.teuto-classics.de/kc/pklongtermresults.pdf

This sounds like "Hey Scaistar, i can demonstrate that there are most documents that say other oppositing side of ACGR!".

when you "paste" an extract from an other article.. it's dangerous extract only "some rows".

i think it's most important:

We reviewed the charts of 9 patients (12 eyes),

all keratoconus patients who underwent penetrating keratoplasty by one
surgeon, at the same center (is this the best surgeon? or the worse one?)

there is a BIG BIG difference from 9 patients from 1 surgeon, and 14.649 patients performed in each Australian State and 328 surgeons (page 16 of ACGR)

My data are statistics, your data... are only statistics...
but IMHO, australian statistics are most affordable and stable than your...

I remember you that have considered other statistics from italian prof and Dr, eyebank and from Jorg Krumeich.
ACGR book is only widely statistics...

PS: if you think i'm PK supporter you wrong.
If Dr. say me that i must have PK, i'll search other solution, like JMR (see C3R section)

Hello Scaistar,
I didn't only paste 'some rows' from the document... I posted a link to the entire report. I highlighted certain sections to show that there was indeed opposing views to what we are commonly told. I did not say they were fact, only that they were important and deserved attention.
And you are wrong that this is some kind of aggressive counter punch to the data reported by the Australian cornea registry.
I have followed their work for a long time and they have acheived some outstanding work (I am originally from New Zealand).
You again do not see that my only intention is to try and observe both sides of the story... The data that appeared in the study I presented was not the first of its type.
All I'm saying is that, even if this research is limited, how much actual international debate is being centered on the possibility that its conclusions are indeed widespread?
My position has always been that we are 'misled' by mainstream statistics... we are assured of 'fantastic' results and 96% survival rates.
What this article does is question... what it is that we judge success by? Are all the possibilities being investigated or has the medical professional resided to the fact that the graft is the 'best' option (In case of advanced Kc)...
Is the mere fact that the graft tissue has not been rejected evidence of success? Or are there other cellular reactions that are taking place that also effect the outcome?
I do not assume that you are a PK supporter... in fact I find it foolish to put ourselves into such restrictive groups.
If someone tells me that I can improve on my mini ark results then I'll investigate their claims... If I publish alternate graft findings then it is to inform, not to denigrate.
What we have to do is pick out the interesting facts... we do not have to accept or deny the article as a whole. This is where informed questions to our respective eye specialists are born.
Do you personally believe that we are fully informed?
Do you believe that our doctors care that we spend hours on the internet trying to make sence of the scientific data that they themselve should already know?
Does 'acceptable' data have to be gathered from a large % of the population for it to be of interest, can not further research lead on from smaller findings?
I may be very wrong... there is no data to say either way... but I again question just how much graft patients are told, how much it is thought that they should know and how much the operating surgeon has investigated the chances that an alternative treatment may be better employed?

I personally know of a case in Torino, I met a woman who had Keratoconus and had just had PK in her left eye. I asked her if she knew about alternatives to her problem... The surgeon had told her that NO OTHER TREATMENTS EXISTED, Her personal eye data pre graft was withen that acceptable to ARK. The last time I saw her she was far from happy, I told her about mini ark... She went on to have graft in her right eye.
Now this woman may have been very unlucky, maybe she had a bad doctor, maybe this was one case in a million...
Do you know the answer Scaistar? Do you know how many of us are treated with the respect we deserve? I dont... but to at least attempt to make sure that this % is as low as possible I urge KC sufferers to ask difficult questions of their doctors.
It is not a case of they know best... its a case of they must be compelled to cover all the possibilities.

Please do not paint me as a hater of the medical profession, I'll say again quite clearly that I have great admiration for those who seek to push the limits of medicine and provide us with the very best health care available. But in my humble experience, with this thing called keratoconus, I have found the approuch of many lacking.

An example would be statements that are common on the french forum: Again I have nothing against the french forum or its members but here we have the statement that... 'Our board of medical experts have reviewed the option of Mini Ark and say a resounding 'NO!!!!'.
This is an example of medical misinformation at its worst, as of course NONE of these medical experts have ever visited Rome or any of the doctors who promote ARK.
You may say that it is not nessessary to visit the doctors to make this kind of statement... I say it is essential!!! Otherwise the information we are being feed by those we trust is nothing more than opinion.

I think it is very important, if this line of discusion between us is to be of any worth, that you see that I am not the enemy of you or any other KC patient... my sole intention is to expose sections of our treatment that I feel are insufficent.
I have friends that have had crosslinking, corneal grafts, intacs and of course mini ark... I respect all their decisions and welcome their comments on my choice of treatment.
I do not respond well to those who assume and those who are quick to condeem but not to learn (I am only human )... I am not talking about you so again, this is not an attack.
Let us focus on the problem (and I believe with PK there is one) If you do not then I'm sure we will compliment each other very well... opposing views can only offer the public the most extensive information.

Hari

Who say 96%?
I think that Australian datas is extremely real (and near effective results).
There are 10% that are unluckly. There are 30% that have no long results.
There are 60% of PK that have long life.
There are NO "fantastic results". There are NO "bad results".
all doctor i have writed, or spoked, ALWAYS say that PK is the only way for go out AT THE END. It's no CURE, no Treatment, no SUGGEST for PREVENT KC.
In Italy we have long list in hospital. Doctor try to help ONLY PATIENTS that real need PK, due to lost visus and high risk for corneal condition.
No one sponsorize PK like perfect "solution", or "favourite option".



NO. if i was happy for info that had whan discovered KC in me.. now in Italy there no site web, no patient's Association (and this is a serious thing)



I keep on not understanding! Can you post her data pre-graft please?
Is seems to me that condition for transplant are INCOMPATIBLE FOR MINIARK



Yes, i agree. I've asked some information or some documents of doctor equipe that says NO. Have no response..
I don't accept this approach too. In fact in the other post i have no published email from doctor that have writed me "NO" only because this is message from "Mama". I only have published doctor that have Results in hands or speak about "facts", not "word".
I have asked to doctors of Siena University a study on MiniArk patients.
They say "No Problem. Send here this patients", so, i don't see "dangerous establishment" that condamn and judge without "SEEING".
IF this doctors not respect this promises, i simply go on, and search another center that listen me.
On this FORUM we have 3 doctor. Dr. Lombardi, Dr. Abbondanza and Dr. IGOR (name). He don't know about MiniARK. Simply he want to know this procedure, and probably in this months go to Rome for assist to Miniark operation (another example of inexistent "antique esthablisment")

Surely you cannot be serious when you say.... 'Who it is that says 96% Success rate??'... Anyone with access to a computer that searches for corneal graft information is attacked with this data.
You say there are 'No' bad results.... 'No' bad results??? I am not looking for bad results but you are very badly informed to think there are no bad results.
Maybe the result that you quote...60% is more realistic... but 96% is the number quoted on the vast majority of english sites. They are not hard to find just google search for corneal graft for keratoconus and see for yourself.
Also the majority of research data on various med link sites quote... 'very favorable results when PK is associated with Keratoconus'.
You have perfectly stated my point in saying that the surgeons you have contacted have said: 'PK is the only way for go out AT THE END. It's no CURE, no Treatment, no SUGGEST for PREVENT KC. '... You are in effect saying, there is NO other treatment for advanced KC, It is NOT a cure (I do not dispute that doctors feel that it is), and that it does NOT prevent KC from returning. You are argueing my point:)
I am very happy that you feel that you are not fully informed... and I see that this is why you have set up this web site (You should be commended for your efforts)... but who is it that you feel you are not being informed from? The only answer can be the medical establishment... again this is my exact point.
As regards the woman I spoke of... Again my point is that she had PK when in my view her condition did not warrant it. Her information was not that far removed from mine (I am not a doctor) But should she not at least been assessed for possible ARK? The fact is she was told NOTHING existed to combat her Keratoconus... She knew nothing of crosslinking, ferrarra rings, Intacs or Mini ark, again my point is that she was not informed. I do not know her exact data but I will try and find out when I'm in Italy shortly. It was very similar to mine (and as you know I HAD Ark).
I'm happy that we agree that unresearched rejection of ARK is not acceptable.
I am a little confused though that you say that you dont see problems with the medical establishement yet you state ...'If the doctors not respect this promises, I simply go on, and search another center that listen me'.... WHY are the doctors not listening to you, do you not deserve there time? Do they not have the answers? What is it that makes you sight not their main priority?
I have never heard of Dr. Igor... but if he is prepared to at least step through the doors of the Mini ark clinic then he is making a far greater gesture than any other I have heard of. If once inside he chooses to dismiss what he see's then at least we will have an informed alternative to what we are being told by Prof. Lombardi and Dr. Abbondanza. And this is far more than we have been treated to in the past.

Hari

perhaps I 'm badly express me.
I wanted only to say that I not believe that there is a limit, and you are inside of it, or outside. For which can be said to you "the transplantation has worked", or "transplantation has not worked."
The graphs Australian seem very more Royal because they dearly pick up the various " tones " that can be come create.
There are people that have forgotten when they have made operation.
There other people that in few year they are found again in a nightmare...

However, I keep on not seeing any connection between miniark and transplantation, due to different phases in which it is possible to release operation.

I perfectly agree with you if I must look at an alternative between intacs and miniark.
if currently I had to imagine a hierarchy, I would see to the same plain MiniARK, Intacs and C3R. If could not choose among these three I would pass to DALK, and only to the end to the PK.

The difference is... if you go to Dr. Lombardi, he show only defect of other techniques and praise MiniARK.
If you go to Intacs doctor... he say that is the only way to late or exlude PK... and no one word about miniark...

...and about this two, frankly, I would not know how to tell you what's the worse one...



The university in Siena results to the first place in the classification worded by a note Italian magazine. At Siena they treat all illnesses of eye.
When I asked to Dr. Mazzotta (very enthusiastic of the C3R) how come not him start immediately to do it if results were so comforting, he explained me that (apart burocratic problem) for them the C3R is only a technique to add to the others. If before they had 350 things to do, they now have 351 of them. He told that it would be a good result if he succeeded in doing at least 2 crosslinkings to week (but more reality held the average of one to week).
When I made the proposal MiniARK to him and other team doctors he they told me that could be done, but that needed to exploit calmer times, and proposed therefore PRE / POST summer.

An analysis on a patient asks most time, and it would be rather conceited that the university in Siena stopped to satisfy us.

Ciao Scaistar,
I think that, although your english is very good, we are misunderstanding each other.
My point is that anyone new to keratoconus will see '96%' posted everywhere that keratoconus is mentioned in connection with graft. We are taught that this is the number and it is set in stone.
The results from the Australian registry should be widely seen as they call in to question the validity any clinic or surgeon that openly states 96% 'Success'... these clinics must show how they quantify success.

I'm afraid I have to differ when you say that prof. Lombardi will only present Mini Ark as an option and denegrate all others.
In my experience he has been very open to extending his treatment options... He has spoken of various componants of other treatments that he has investigated and also speaks highly of how these various techniques are used in certain curcumstances (And also as highly of the Doctors who perform them).
We see an example now that he has taken the time to fully investigate the merits of cross-linking and has decided to incorporate it into his treatment plans.
Purhaps to fill the void (advanced KC) you mention where Mini Ark is less effective and where most would normally progress to graft?
But he is also very direct in what he see's as wrong with some of our accepted treatments... He speaks his mind without political correctness, a trait that I appreciate. Especially in a system where people hesitate to tell you a direct answer in fear of alienating other sections of the same system.

The connection between Mini Ark and graft as I see it is simple... If your eyes can be treated with Ark BEFORE they advance to graft level then there is no need for PK.
Of course this line of thought has in itself many variables... what if your KC would have never progressed, what if you may have been able to live out the rest of your life with contacts or glasses. Again the answer is choice... we should have access to the information so WE can choose the direction we wish to take.

When I said 'WHY are the doctors not listening to you, do you not deserve there time? Do they not have the answers? What is it that makes you sight not their main priority... I wasn't refering to the staff at the University of Siena.

You said ...'IF this doctors not respect this promises, i simply go on, and search another center that listen me'...

Who is it you are talking about?, who are these people who will not consider your problems? If they are doctors then you too see my frustration at sections of the medical system that do not function for our best interests.

Hari