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Post Info TOPIC: Life after Mini-ARK


Executive

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Date: Mon Jun 19 6:50 PM, 2006
RE: Life after Mini-ARK
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Hi Ulrike,
Thanks very much for updating us.
I also believe that Mini ARK takes time to reach its full potential... as the scar tissue forms and goes to work strenthening the cornea. It can be frustrating but it will be worth the wait :)
I too have a good eye and a not so good one... I think this is a common trait for Keratoconus.
I always think back to how my life was pre ARK and for me at least there is no comparrison. It comes down to personal expectation I guess when we try and quantify our success.
We are all diffrent and heal in diffrent ways, but the human body is a fantastic machine... we just need to give it time to work.
Regards,
Hari


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Date: Mon Jun 19 7:08 PM, 2006
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Hi Sajeev


Thank you for your answer. Probably you are right, the nearly 100 % sight on the left eye (with slight shadows due to the high astigmatism) are sufficient to live a normal life again and I thank God and Dottore Lombardi for that. Contact lens wearing on the right one (which has still triple vision and other problems) is out of question for me. They have already caused enough damage to my eyes ... the problem at the moment is that I feel a bit depressed, I mean who would be not after 4 operations and no really visible improvement ? - objectivly it indeed improved a lot, Claus has seen the eye under Microskop, it looks perfect, I just cannot see ...


Hi Hari


Thank you also for your answer and your attempt to encourage me. It really helps to hear you saying that you think it still can improve if just enough time has passed. ... so I will wait and hope and pray to God. How much do you see at the moment ? Do you wear glasses ? Do you need a further operation ? Questions, questions By the way Dottore Lombardi told me that you have opened a new forum I am just starting to ask myself if he means the kc-freedom or even a new one ???


 


Best wishes for you both


Ulrike


 



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Executive

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Date: Tue Jul 11 3:54 AM, 2006
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Hi Ulrike,
In answer to your question... My eyesight is fine at the moment. I dont wear glasses at all to read/ drive etc. My right eye is still not as sharp as my left (the right has always been my worst eye) and I'm not sure if it will need an additional touch up or not. As far as I'm concerned life is fine as it is...
I was supposed to visit Prof. Lombardi at the beginning of the year but because of work it has been impossible. But I will hopefully be there in the near future.
You will have to send us another post about your progress? I hope all is well. Over the course of my recovery my eyesight has altered... as the natural healing process takes its course. To be honest it did worry me in the early stages but with time and patience I began to see very good results.
It is true that I'm attempting to put together a forum and website... (Actually my intitial intention was to concentrate on creating some sort of third world eyecare awareness site... but the more I investigated the more I saw that many existing eye aid programs are doing fanatastic work already).
Keratoconus has affected me and my life in terrible and amazing ways... the new site will hopefully allow others to access the various treatments without having to search the internet for hours like I had to. The information exchanged on forums has helped me personally enormously in the past... its the people that make a site not the homepage.
But in saying this the new site is designed around a definite standpoint but will encourage debate and discussion regarding all views (Well thats the plan anyway :)). These sorts of projects take a very long time to become anything viable... so this one is a work in progress.

It became evident that language was a major problem when searching for KC related data. So the intention is to create a sister site to KCGlobal that trys to encourage interaction between the various languages. The extensive database of KC related data collected by KCGlobals forum members will be an invaluable tool... one that will hopefully be added to by exchanging data between the two sites. But as is usual with these sorts of things... lots of ideas and no time to do them :)
I'll keep you posted :) and remember to keep us up to date with whats happening with you.
Regards,
Hari


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Date: Wed Jul 25 6:07 PM, 2007
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Pella wrote:

Hi All,


At last I have found a site where I can learn from patients about their experiences with the KC disease and post operation experiences.

My son was diagnosed with Keratoconus during 2004. He is now at stage I to II (both eyes). After exhaustively searching the web for a cure, I came across the Lombardi web site in which good post operation results are claimed. I proceeded to make an appointment for my son to see Prof Lombardi on 10 September 2007.

Several local Eye Specialists have however since advised against the Mini ARK treatment, citing it as an outdated procedure, superseded by Laser and currently the latest trend is Crosslinking with Ribioflavin. Although they confess that Prof Lombardi may have an initeal 95% success rate, they state that any grafting procedure on KC will have a very small success rate if evaluated after 10 years post operation and challenged me to prove the contrary. I am sure that, given the Prof's excellent record of success, these statements are incorrect. We would very much like to continue with our visit to Prof Lombardi. Can 10 persons with 10 years post operation please post their experience with Mini ARK after 10 years? 



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Kind regards,

Pella

Tell me your criticism and I will tell you your sins


Executive

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Posts: 397
Date: Thu Jul 26 11:46 AM, 2007
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Hi Pella,
Welcome to the forum...

Although they confess that Prof Lombardi may have an initeal 95% success rate, they state that any grafting procedure on KC will have a very small success rate if evaluated after 10 years post operation and challenged me to prove the contrary.

My answer to this is that none of the doctors you have spoken to have researched mini ARK (they may have data that concerns RK but this is not entirely valid as mini ARK is a specialized varient that deviates from RK in many respects).

For example with mini ARK the incisions are ONLY performed within a central radius that is totally removed should graft be required. So how can it be that mini ARK in any way contridicts graft? RK on the other hand had much longer incisions and these may therefore have affected the outcome of a subsequent graft.

By saying that mini ARK is an outdated procedure these doctors are saying that laser treatment is the solution in all cases previously corrected by RK. Cross-linking is a very interesting technique but it may not be the answer in all cases, laser treatment is not really an option for keratoconus treatment... the thing with mini ARK is that it is a surgeon based procedure... it is not a skill that can picked up overnight and it is one that requires great surgical precision. Laser treatment on the other hand is far less relient on tactile skill.

I know for a fact that prof. Lombardi has been doing this treatment for well over ten years now... but I also know that its near on impossible to get people to present their data. Many in the past have said that this is probably because mini Ark patients have had bad experiences and are scared to come forward... I totally disagree with this (If mini ARK had damaged my sight I'd be telling my story to every one I could find to listen).

I can honestly say that in the more than two years after my ARK operation I have found no disaster cases... I have come across some who have not been totally satisfied but then each of us has a diffrent expectation of success.

I am trying to solve this by collecting together as much mini ARK data as possible... like I said its no easy task (The majority of ARK patients that I speak to simply say that they want to forget about keratoconus and move on with their new lives)...

We know that mini ARK was developed by prof. Lombardi and is only used in his original exact form in two clinics in Rome. My challenge to your doctors would be for them to fully describe this techique... I may be wrong but I would wager that not a single one has requested data from prof. Lombardi or steeped foot in his clinic. If this is true then I dont think it is correct to dismiss mini ARK without due course and solely because it is similar to RK. Also I would challenge them to present you with the data they quote when suggesting that the success rate for graft is reduced ten years post mini ARK... like I said how can they make these claims if they have not researched prof. Lombardi's technique??

It is very pleasing to see someone like yourself digging deeper to find a solution for your son. I wish you all the best. Mini ARK data is very hard to come by... as you know the technique does not enjoy peer review. But I have had, and witnessed, very good results from it none the less... I feel its deserves better attention from the medical world. We do not have enough in the way of treatments for keratoconus to dismiss it as being outdated.
smilesmilesmilesmilesmile

Regards,
Hari


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Executive

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Posts: 397
Date: Thu Jul 26 5:49 PM, 2007
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Hi Pela,
I have just replied to your message at: http://www.keratoconusinternational.com/forum/index.php

Be sure to read nkary's latest message at:
http://www.keratoconusinternational.com/forum/viewtopic.php?t=1121

All the best,
Hari



-- Edited by Hari at 17:57, 2007-07-26

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