All of us Vs Keratoconus


Members Login
Chatbox
Please log in to join the chat!
Post Info TOPIC: Question for Prof. Lombardi


Executive

Status: Offline
Posts: 397
Date: Sun Mar 27 12:13 AM, 2005
Question for Prof. Lombardi
Permalink   
 


Hello Prof. Lombardi,
I recently posted a question on the Center for Keratoconus's 'Ask the doctor' forum, its a question I'd asked many times... Finally it has been answered (Of a fashion).
I was just wondering if you would like to comment on the Doctors brief answer:
My question was...


'Could someone in the medical field please answer this question:
The mini ark procedure created by Prof. Massimo Lombardi in Rome is said to violate an already thin Kc cornea, but even if this contention is true then why is it not at the very least considered as a pre corneal graft technique?. Being as it ALWAYS falls withen the area removed during PK... If mini ark fails then the affected tissue is removed and replaced by a donor cornea, as would have been the case if mini ark did not exist.
I speak from the perspective of having had mini ark and for me at least KC is a thing of the past... I just wonder why this procedure is not a hot topic among Corneal specialists?.
If Prof. Lombardi is wrong and is misleading the KC public with his lies... then why hasn't anybody stepped forward and denounced it publically (After of course studying the procedure to see if it has any worth). This is not RK, this is a refined varient... but the truth is that I had KC and now I see. And this is something that you will not find no matter how far you search on the net... KC has no cure.
But I use the term cure loosely, because this is not one... it is a treatment, and one that we as Kcer's have been denied access to. My only question is why?'
I thank you in advance.



This was the Doctors answer:


'The ideal indication for corneal transplantation occurs when the cornea is scarred to the point where even ideal gas permeable contacts do not provide adequate vision. In such instances, the clear donor corneal tissue provides a medium for light to once again transmit through unimpeded. As you might imagine, incisional keratotomy in a significantly scarred corneal tissue will not reduce opacification of the scar. Even with keratoconus patients with minimal corneal scaring, incisional keratotomy fall outside standard and prudent treatment here in the U.S.'


Dr. BC,      O.D., F.A.A.O.


To me the last sentance says it all... Mini A.R.K is not even considered, and why? Because the powers that be in the United States dont think its prudent. Well I think its extremly prudent that the medical establishment starts treating people with the intelegence they deserve... I for one are going to decide what is or isn't a prudent treatment for my disease, I want to be informed of every option. But I'm not a doctor, what do I know? Very little actually and if this kind of exclusion of information continues I'll know even less!


Regards,
Hari Navarro



__________________


Member

Status: Offline
Posts: 11
Date: Wed Apr 6 11:32 PM, 2005
Permalink   
 

Hi Hari wellcame back in the forum and with us,if you would follow all my suggestions of therapy you would not get such severe flu!
Any how please forgive me for such long mine silence ,but I had all my computers infested by virus send by "good friends" as you can immagine.
I will answer back to your question plus to the American Dr.comments.
First I still do not understand why a theorically "dangerous presidia" as my ARK'mini'ARK performed by 2 mm paracentral corneal incisions can worsen the Kc.corneal conditions as reported by the most of "official eye'specialists" and the same use to make a 360 full thickness 8 to 9 mm diameter circular incision to perform a corneal graft,and after such invasive and demolitive surgery they need to perform (similar to ARK'mini'ARK) radial,tangential,semicircular incisions to correct high astigmatisms that regularly follow the "corneal transplant"as a rule(only 10%are free from this complication) and that no spectacles or even hard contact'lenses can correct.
So who can explain to us the difference between my incisions and their ones!?
Why my are bad, for the cornea, and their are, on the contrary, good and helpfull,
the fact of the "efficacy" of such "their" incisions to correct post transplant high astigmatism is indeed a confirmation of the efficacy and prooved "by peers"utility of my incisions as well!!
I want now to contraddict the American Colleague assertion of impossibility that "radial properly done incisions "cannot help corneas where a central or paracentral "Leucoma " is located as a consequence of continous mechanical "frictions" of hard contact lenses as many as the "number" of "eyelids blinkings" that occur every day of Kc. hardcontacts wearing patient.
It is not true!!!
I can witness that every leucoma will profit and benefit from the "Staminal Cells" activation induced by the biomechanical stimulation provided by the corneal radial incisions of ARKminiARK this has been prooved 20 years ago valid for RK for myopia correction with "Electronic biomicroscopy photos" taken in Fyodorov Institute in Moscow where staminal indifferentiated cells were found as a consequence of RK incisions.
I have several dozens of patients that have progressivly improved in corneal transparency after a RK or ARKminiARK were performed where "leucomas" were reached by the corneal incisions done with a "micrometric diamond knife".
This has been proved scientifically with "photos".


__________________
Prof.Massimo lombardi


Member

Status: Offline
Posts: 4
Date: Thu Jun 23 8:43 PM, 2005
Permalink   
 

Hello Hari,


I read your posts regarding Mini Ark....now my KC is not quite so advanced as to require this drastic (unconventional and unapproved treatment) but the answer to your questions is very obvious. Why are we denied this treatment say in the USA and many parts of the world whose medical treatment follows US Standards....the magic answer is MONEY.....


If this treatment worked for many many KC patients...all the RICH docs performing corneal transplants would become less RICH, less contacts would be sold, less contact lens care solutions, less visits to the CLF etc etc etc....


I come from the old school of business where we use common sense more than college degrees and I try ooking at the bigger picture...


We all know that a alternative to petrol exists but our cars still run on petrol....think about it...


Larry



__________________


Executive

Status: Offline
Posts: 397
Date: Fri Jun 24 12:33 AM, 2005
Permalink   
 

Hi Larry,


I'm in complete agreement with your statement... that the vast amounts of money generated by the contact lens wearing, corneal graft recieving KC community is the main stumbling block to alternate treatments being considered. I have always thought this... my question was asked so as others could add credence to my beliefs.


But I do have to take issue with your first statement that Mini ark is a drastic (unconventional and unapproved treatment)... how is it any more drastic than having your entire cornea removed and replaced with donor tissue? Unconventional? yes, if you mean it flys in the face of what we are told as patients and what young eye surgeons are taught in med school... but is this bad? And unapproved... approved by who? Who is it that sets the acceptable standard by which we can all sigh with relief in the knowledge that our chosen treatment has been given the all clear?


This is not an attack on your point of view, as I believe we are both on the same track... it is just that I think that the time has come for the mis-information that is associated with Mini Ark to be cleared up.


My only hope is that more Kcer's will read past the generic negative statements that circulate the web and see that this is a real, viable option... and one that has had to fight against an unreceptive medical establishment for many years.


Regards,


Hari



__________________


Member

Status: Offline
Posts: 4
Date: Sun Jun 26 8:10 AM, 2005
Permalink   
 

Dear Hari,


Please do not misunderstand, when I said drastic, what I meant to say that it sounds drastically successful and unconventional and unapproved, what I mean is unapproved and unconventional by the standards of those who reject anything that actually works.


My problems started when I was 40 and I noticed my eyesight changing every couple months I never saw an Opthal and was never told of KC etc. I went to India to get Lasik, it was only then I found out I had KC. I got Lasik in my right eye in which I now have hawk eye vision and left on Lens. My RGP experience from day one was miserable even though every CLF told me it is a perfect fit etc. I just could not get used to it.


When I found this Soft K lens I mentioned it to my Opthal in India and he told me to stick to the RGP and eventually I would be used to it and told me this is not the time to experiment with my eyes. I am glad I did not take that advice.


My brother has KC in both eyes since his early 20s and grafted in the left as well has been struggling with RGPs for years and now I have managed to get another trial set from Isreal and he is going to be visiting my Opthal in India to get fitted as well. If it works for him, it will be the first time in years he will be able to see with some level of comfort.


Infact I was reading about the mini ark and please try to give me some info, is Italy the only place it is being done at the moment and what are the approximate costs of this procedure ??


Regards / Larry



__________________


Executive

Status: Offline
Posts: 397
Date: Sun Jun 26 10:05 AM, 2005
Permalink   
 

Hi Larry,


Sorry that I misunderstood your words... Although I have heard of it before you are the first person I have spoken to that has a family member with KC... please let us know more of your experiences.


The mini ark operation is a variation on the RK procedure that has been used and developed for many years. A lot of negative press is associated with the original technique as it was imported to the US from the former Soviet Union and, to my mind was used on a large scale basis by surgeons with limited training in this specific area. With the advent of Lasik the need for surgical skill decreased and RK became classed as an 'old' superseeded technique.


So yes, Mini Ark is at present only available in Italy... This is a link to Prof. Lombardi's site (It has sections in English): www.lombardieyeclinic.com. Recently other doctors have begun using very similar procedures in the fight against KC. To read more about them and to read of the experiences of those who have had ark see the mini ark threads on our homepage.


Just one further thing... I have been accused in the past and now very recently of promoting Prof. Lombardi for my own gain (Not by you). This is NOT in any way true... it seems that human nature is suspicious and that with any good result people automatically think the worst. Its a bad thing to say but I'm starting to think that some people would have been much more relaxed had my results been bad.


All I can say Larry is that with Mini Ark I have personally had very good results... but my only intention, and that of this site is to present to you as many options as possible. There are many alternatives for you to explore... We have a new member who has had cross-linking for example... I hope you find what you are looking for ,


All the best,


Hari


 



__________________
Fil


Veteran Member

Status: Offline
Posts: 31
Date: Mon Jun 27 4:25 PM, 2005
Permalink   
 

Hi Hari,

I hope that there will be a real treatment for keratoconus in the near future. Cross-linking and mini-Ark are interesting, but, for my opinion, they are not a treatment. They are alternative to the classical medicine.Phil

__________________


Executive

Status: Offline
Posts: 397
Date: Mon Jun 27 7:16 PM, 2005
Permalink   
 

Hi Fil,


Its been a while since I've heard from you... Hope your studies and job searching are going well. I'm interested in what you class as a 'real' treatment... I know there are a lot of interesting things being researched... but I just was wondering where you saw the most potential?


Regards,


Hari



__________________
1 2  >  Last»  | Page of 2  sorted by
 
Quick Reply

Please log in to post quick replies.

Post to Digg Post to Del.icio.us

www.kcfreedom.org

Knowledge Works