Elective Treatments

[GarethB]

Hari,

It was the Lombardi clinic that thought I was unsuitable for the mini-Ark because of my grafts and topography.

It was the C3R pioneers at the Dresden eye clinic who were concerned about what may happen to the grafted material if that started to thicken like the KC area that would require thickening to help regress or at least stop the KC.

So in both cases it was the pioneers who cinsiderd at this stage there were too many unknowns to take the risk rather than my local eye surgeon.

[Hari Navarro]

Sorry about that Gareth I misunderstood your previous post. But as it turns out this is actually an interesting point as Mini Ark and its doctor are often portrayed as oppotunist, your personal experience shows otherwise.
Anyway, at the end of the day all that is wanted is that people have access to the option of Mini Ark. It is not for everyone but I think it is unfairly sidelined from becoming a possible answer in certain cases.
If certain medical professionals feel that this decision is unwise then let them come forward and research it to the point of explaining exactly 'why'.
Hari

[Sajeev]

Dude the questions you ask are good ones, I can not see why there is not good answers for them from an independent source.

Going on to other points I think the main thing is you still keep your own cornea's and you don't need contact lenses!! Just imagine you don't need to look for your contact lenses on the floor if you loose them!! or have any other problems associcated with them!! you have full time always on vision!!

Best

[Andrew MacLean]

It is not just a question of medical professionals researching a procedure; they first have to get permission to proceed from their local ethics committees..

Some procedures are pioneered by people who show a marked reluctance to publish outcomes over a period of time. This does not encourage ethics committees to see merit in the procedure.

The research Sajeev highlighted also suggests a possible hazzard in RK: it may tend to produce KC.

Andrew

[Hari Navarro]

It is not just a question of medical professionals researching a procedure; they first have to get permission to proceed from their local ethics committees..

I do not believe that our medical professionals need permission to take an interest in any of these new procedures. Maybe if they intend to publish their point of view... but to merely take the same time and effort that I did and be able to sleep at night knowing that when their patients ask them if there is any other option available they can truthfully say NO.
I have said it before that it worrys me that we, the patients, have to sift through all this technical medical information in the search for an answer. Why is it that there are keratoconus specialists in the world that do not or will not have any solid stance against mini ark (sure they can dismiss it from the common RK comparrision standpoint but I'm talking about actually knowing the detail of this particular operation).

The only 'marked reluctance' that prof. Lombardi has shown over the years is to stop talking about his technique. I have seen that he has submitted papers and these papers have been rejected (not I note from any medical standpoint)... up untill the late 90's he was regularily presenting his method at congress. But to talk to deaf ears for going on twenty years lead to very little in the way of peer support. The obvious answer would be to say that this was because ARK was at fault (ok, so step up and say exactly why) or that Prof. Lombardi has a persecution complex that his supporters seek to promote (Again why? Whast is possibly to gain from painting ark and its doctor as oppressed fringe medicine)?
The highlighted RK result is one that I believe only qualified doctors should comment on (As I have been saying this data is way to deep for the average KC patient)... but at the same time they can compare it to contact lens induced corneal warpage.
We need to know all sides of all techniques... the playing field needs to be flat to address all the methods at our disposal.
Hari

[GarethB]

Not sure about Italy, but we have a regulatory/watch dog called NICE which look into the effectivness of drugs and should they be available on the NHS and this is different to European drug submission regulatory athorities.

NICE also looks in to the effectivness of clinical procedures. Any proffesional in the UK can investigae surgical techniques without going to an ethics commitee provided they confine the research to literature studies and speaking with fellow proffesionals.

Researching a surgical techneque by actually trying a procedure on a patient needs to go before an ethics commitee. There they must lay out what the aim of the study is and how the data is to be collected, analysed and reported.

[Andrew MacLean]

Interesting thast Hari is prepared to consign a negative result to uniquely professional scrutiny but is willing to encourage others into a procedure on the basis of anecdote alone.

For my part I am deeply grateful for the regulatory climate in the UK.

Andrew

[Hari Navarro]

Interesting that Hari is prepared to consign a negative result to uniquely professional scrutiny but is willing to encourage others into a procedure on the basis of anecdote alone.

What is interesting is that you attribute my 'preparedness' to some sort of agenda. Please reread what I wrote... I said that few of us (ie: neither you nor I) are medical experts.
We both have KC (or did have) and we both speak from the sole informed position of being Kcer's... and that is where our input ends - and this is also the point where our medical experts need to take over.
I said that the data contained within the RK result (note again that these results concern RK and not mini ARK) is too complex for a layperson to productively answer.
I say exactly the same thing about the majority of information regarding mini ARK... it really is a subject that interested doctors should be thrashing out with the Lombardi clinic, as you rightly said... my input is purely anecdotal.

You can be grateful of the regulatory climate in the UK but by adding this comment you imply that mini ARK is somehow detremental. It very well may be but your regulatory climate has neglected to research it fully enough to let us know either way.

Finally I have gone to great lengths during my mini ark treatment NOT to 'encourage others into the procedure on the basis of anecdote alone'. I have said time and time again that the key is education and the free flow of information. That we should be given the respect of know ALL options available.

From where exactly do you come up with the premise that I am sheparding people into mini ARK? All I said was that in this particular case anecdotal evidence is far more prevelent that published reports and that it is up to the patient to decide if there is something to this thing or not.
I am not asking that the medical establishment launch a full scale research project of ARK overnight or to proceed with trails on human subjects... but there is absolutely nothing stopping an interested medical expert from doing what I have done - To take enough interest that they research what it is that ARK is all about and then report back to us.

Is it not strange that in 20 years we do not have one (actually there was a brief Swiss statement) published report spelling out why the Lombardi clinics results are misleading or false?

I sing the praises of Ark no more loudly than someone who has had a successful corneal transplant. I do have to cover a little more ground as this technique is not as well known. But I have absolutely nothing to gain by saying what I say... I do it because I have had a treatment that is not suppossed to work, one that is not spoken of in the media, one that has had very good results for myself and others but one that is 'shut out' without even the respect of a general statement from the medical establishment. This angers me, not solely because I personally believe in mini ARK but also because I know how few options we have as patients.

Hari

[Andrew MacLean]

I imputed no such motive. I just noticed that some data are for exclusively professional debate, and others are not. I can tell from the disproportionate response that I have touched a nerve.

Andrew

[Hari Navarro]

As far as I'm concerned everything is open to professional debate (I only said that we, the patients, can only be expected to understand so much).

Where is that you noticed that topics were exempt from a given group?

You say that you implied no motive but Andrew you did say:

...'but is willing to encourage others into a procedure on the basis of anecdote alone'.

Are you not saying that I am encouraging people into mini ARK? Does this not require motive? I have never once suggested to a patient that they have ARK, I have instead tried to steer them toward further information so they can decide for themselves.

I dont want to argue here but I do feel it is important that people see exactly what the issue is.
Touching nerves is a good thing... it gets people talking and that is what these forums are all about.

Hari