All of us Vs Keratoconus


Members Login
Chatbox
Please log in to join the chat!
Post Info TOPIC: The TRUTH about Keratoconus


Veteran Member

Status: Offline
Posts: 40
Date: Wed Feb 2 12:58 AM, 2005
RE: The TRUTH about Keratoconus
Permalink   
 


Hi Mike....

If you want to you can....I except what i know and have found out through my own hard work....i can understand how the two can interfere with each other (by going out and finding out and understanding the mechanics and bringing it to peoples attention, as by doing so it may help them)....there is no need to say that they do interfere with each-other when they don't...there is more benifit to say that they don't than they do....as your implying

I think you should first try to understand in detail how the two works before you question something about how the two may interact....if i explain to you...you don't beleive me....if Prof. Lombardi explains it you don't beleive him....

Patients can't compare there out-comes like for like...or what the out come may be...only a doctor can do that....you like me can go out and put that information here but you did not...and your free to do so.....Now if you don't beleive a doctor about this...is there any need to to find out what there answers is?....but your free to carry on you detective work on the net which is not a precise science by any means,


catch you soon....

__________________


Veteran Member

Status: Offline
Posts: 40
Date: Wed Feb 2 4:32 PM, 2005
Permalink   
 

I just wanted to talk about X-linking....

X-linking with Intacs

I have been following this....but there is talk of cell death.....

here is the link...

Eye on Research

I friend of mine told me that a doctor on the nkcf...
KC -link...who was calling them-self DR "S" was talking about Cateracts caused with the use of the UV light with this proceedure....We could not re-trace this posting....or if this was true...or any other referance to this....so i don't know if what this Doctor is saying is accurate or not.....but i just wanted to share this info....as it may help!!!

Apparently on the german forum someone has gone to get this done...and we are waiting for there report on X-Linking...

Also it seems that it is being used in Mexico as well in the US...

From what i have been reading about X-Linking it is more suitable for mild KC...unless combined with Intacs or FR...which further flattens the cone....but it is all experimental at the moment...but things are going in the right direction....so its good news...I suppose!!!

Catch you all soon...Take Care:)

__________________


Member

Status: Offline
Posts: 14
Date: Wed Feb 2 8:37 PM, 2005
Permalink   
 

Hi Sajeev,


I do believe Dr Lombardi. I also understand how the cornea can actually increase in thickness as Dr Lombardi gives an explanation of this phenomenon post mini ark on his web site. In asking about the people you were referring to who had mini ark and ferrara rings, I was just trying to get new experiences as I feel this improves and enriches the discussion on Mini Ark.


Best regards,


Michael Coughlan.


 



-- Edited by QuintriX at 00:25, 2005-05-23

__________________
Anonymous

Date: Wed Feb 2 9:21 PM, 2005
Permalink   
 

Hi Mike....do you like my new name:)


...anyway......I would like many mini-arker to come here....the only Five english writting patients i know are Hari, Lucio, Norbert James and Yuri (who you have not met).....Fluent english speaking patients from the west are very few and far between...thats why I am trying to give people in the west some insight here....some like James (who you know)...don't like the net or forums....or even need it....most want to forget about the kc hell they were in....to track them down is hard due to these reasons....Plus they would feel like a "guinea pig"....so it is a sensitive matter...I know i would not like to be asked if i was in there position....


Now, there is studies you can find....which show that there are removals of rings due to various reasons which do happen to a degree and in some studies it is quite a good percentage.....now people with problems and know about mini-ark are the ones the mini-ark doctors come in to contact with....others could have got better results with mini-ark....as the thinkness of the ring still remains in the eye....also no pupil smallering drops are needed for driving at night for mini-arkers...so in that respect its better too..... No one person who had rings....and then had mini-ark would know what the out-come would have been if they did not have rings...but only had mini-ark for there kc from the start....only a Doctor would know that....


i will try to explain the mechanics by text......if you imagine a hair comb.....the teeth of the comb being the incision of mini-ark....and were the teeth of the comb meets the main part of the comb (which if you imagine is the scar left over from the ring)....you can imagine the force going down the teeth of the comb (as mini-ark pulls down the cone)...is hindered by the stem or main part of the comb (which would work better if there was no obstuction put on it by the ring scar getting in the way....or the stem/main part of the comb where the teeth go back to) Basically....mini-ark is like the spokes of a push bike wheel (its radial)....the force of it working going out-wards...the horizontal scar to these mini-ark incision stops some what the force in which you want the mini-ark incision to go....


Mini-ark Doctors...please correct me....but i truly understand the difficulty found on text....when it is quite a simple thing to explain face to face...even pictures are no substitue really.... but i hope this explaination helps some what...



-- Edited by QuintriX at 20:44, 2005-10-06

__________________


Executive

Status: Offline
Posts: 397
Date: Thu Feb 3 12:22 AM, 2005
Permalink   
 

The truth about Keratoconus is this... Keratoconus is a disease that hides, it hides from everyone but those that are affected by it, It is a disease that cannot be understood by those that do not have it... This is not arrogance. It is a condition of seeing but not, of knowing that someone is there but not acknowledging their shape, of losing contact because you missed that smile , or wave. As we have seen on the limited forum that the internet allows us tactile contact is very limited. I see the truth about Keratoconus as a learning curve, an attempt to create something from the very poor resources that Kc sufferers are offered, my choice, that of mini ark... is a personal one. The truth for me is that I can see where as once I could not. It is not a perfect sight, but it is one that improves with time. But there are others that have had mini ark that are not as happy... We all work toward a solution. The extent of that solution is set by us... I am happy that my vision is not blurred, that I can read, that I can sit in a cinema and watch a film... at this point it is not perfect, but for me this inperfection is a miracle. My objective is only to offer, as always, the option of mini ark... You may review it and hesitate, but at least you had the option,


Regards,


Hari



-- Edited by Hari at 00:26, 2005-02-03

__________________


Executive

Status: Offline
Posts: 397
Date: Thu Feb 3 1:26 AM, 2005
Permalink   
 

Construction and not destruction is the key... If we look to build on a tecnique instead of condeeming it at birth, then so much can be acheived. At the end of the day mini ark may be wrong... but at least you will have tested the waters.


Hari



__________________


Member

Status: Offline
Posts: 14
Date: Thu Feb 3 8:39 AM, 2005
Permalink   
 

Hi Hari,


 


Thanks for your insight.


Best regards,


 


Michael Coughlan.



__________________
Anonymous

Date: Thu Feb 3 2:22 PM, 2005
Permalink   
 

You know Hari you keep "hitting the nail on the head"....I think your so right...once again!!!

-- Edited by QuintriX at 14:34, 2005-02-03

__________________
«First  <  1 2 3  >  Last»  | Page of 3  sorted by
 
Quick Reply

Please log in to post quick replies.

Post to Digg Post to Del.icio.us

www.kcfreedom.org

Knowledge Works