All of us Vs Keratoconus

Members Login
Chatbox
Please log in to join the chat!
Post Info
TOPIC: United we Stand


Member

Status: Offline
Posts: 16
Date: Thu Aug 2 6:27 AM, 2007
United we Stand
Permalink   
 


zeus my friend well done for having found the docters who have the knolage to treat you and i thank you for posting all what you have i'm sure it will help other people who are in similair situations. hope all is well with your eyesight and your cornea's are continuing to stablise
tom

__________________


Senior Member

Status: Offline
Posts: 124
Date: Thu Aug 2 7:45 PM, 2007
Permalink   
 

Hello Tom.Its nice to hear from a new member.Now, i realize that they do exist persons like us who trully cares and want to help each other.i dont want to be too emotional but sometimes it gets me...i wish i could meet you all..Thank you for your reply and believe me i find the specific doctor by searching into the internet and reading medical newspapers.I was diagnosed earlier with keratoconus and no one from the others doctos which i had(i wish i wouldnt met them at all) gave me hope or AT LEAST the mothe***rs to suggest me to the doctor i am now.Everybody here in Greece, who are doctors know him.It was impossible not to know him.What can i person say?just loosy professionals.I was delayed one year to do x-linking because of them and because of me for not searching by myself to find out hope and a treatment.

Sorry for my anger sometimes and expressions but they cant play with a 20 years old heart and soul like that.Anyway,my friends i have found a site that we all must take a look. www.ccl-congress.ch.

All the best

__________________
nothing else matters


Veteran Member

Status: Offline
Posts: 51
Date: Thu Sep 6 12:22 PM, 2007
Permalink   
 

Dear Zeus,

Thank you for sharing your story! smile.gif
 
I can feel the emotional stuff you are going through, and I think we all can, because we are all going through the same unpleasant rollercoaster.

I actually didn't know that PRK combined with CCL was performed in real life, until I read your story. I have been playing with the idea of combining crosslinking with some kind of “etching technique”, but I never thought any doctor or scientist would recommend this to a patient with a fragile cornea. You seem to have proven exactly the opposite.

Cross-linking is hopefully a great step forward. You have taken it one huge step further. I really hope your vision will remain stable as long as possible, so that one day we shall all benefit from this procedure.

Please remember that Keratoconus is mostly aggressive between the ages of 20-30. Hopefully, this means once we grow old the body will take over the fight against this disease by itself when/if the cross links begin to fail.

 

Best wishes, Jan



__________________


Senior Member

Status: Offline
Posts: 124
Date: Sat Sep 8 12:47 AM, 2007
Permalink   
 

Hello jan84.How are you?I suppose being here at this site as a veteran member you have already performed x-linking.Its the only weapon we have for now to fight our disease and yet time will reveal things.Please visit http://www.laservision.gr/US/videos.htm and watch the video about keratoconus.You will hear Dr Anastasios John Kanellopoulos explaining the procedure and the final results.I have 9/10 vision from my right eye and 7/10 vision from my left eye.I dont wear anything like glasses or contact lenses.I see a little halo in the street lamps at night.In day time i have the best vision since i can remember.Everything is so clear,crisp and brighter than ever i can remember in my life.I consider it the best treatment for kc and for that reason many doctors in Switzerland are also performing PRK AND C3R.My doctor is the leader to that and he is the most experienced doctor in the world at this field.Believe it or not Greece and Doctor Kanellopoulos Institute is among the best in Europe and United States.

All the best,


__________________
nothing else matters


Veteran Member

Status: Offline
Posts: 47
Date: Fri Sep 14 7:33 AM, 2007
Permalink   
 

I think I want to go this route. I have contacted Dr. Kanellopoulos for a consultation and that will probably lead to getting it done. I am thinking of getting just one eye done at a time though. I guess I am just scared that I won't be able to see if I get both done at the same time. As well having a hard time balancing everything out best. In the end it is your eyes that are most important but I since crosslinking is nonexistant in Canada I have be using everyone's experience and knowledge along with other websites to educated my self and make this lefe altering decision.

I want to get both eyes done at the same time but I don't want tpo lose my job. I was thinking one eye at a time...

How long was it before you could look through your eyes confortably after the procedure(prk/crosslinking) and do computer work for a few hours at a time? Was your vision still foggy in comparison to only getting crosslinking done which other people have stated?

-- Edited by cloudd at 19:15, 2007-12-22

__________________


Veteran Member

Status: Offline
Posts: 47
Date: Fri Sep 14 9:53 PM, 2007
Permalink   
 

How much did this cost per eye the crosslinking & the prk?

__________________


Senior Member

Status: Offline
Posts: 124
Date: Mon Sep 17 2:45 PM, 2007
Permalink   
 

Hello cloudd.Excuse me for not being able to reply earlier but i was away from athens because this weekend was the campaign elections 2007.So,i went to vote.For the record how old are you and when did you find out that you have keratoconus?

First of all,in my opinion,i think you have chosen a world wide famous doctor.He is the leader in what he is doing and i think you are in the best surgical hands you can be.By perfoming only collagen cross linking you will remove your epithelium.Also by performing prk-collagen cross linking at the same visit you will remove again your epithelium.So epi-will be off no matter what.Thats the treatment process.When the procedure is it done the nursing staff will put you a soft contact lense.Three days later or five you will visit the institute in order to remove the soft contact lense.Your vision acquity will be measured and your eyes will be checked by the doctor.Xmm...I was able to drive at night by the 10th day.I remember i was so anxious about life and the meaning of it,so i took my car and went down glyfada beach.I think the first 5 days is a little difficult and the institute will give you all the necessary equipment as sunglasses,anti biotic drops,glasses for your sleep in order not to touch your eyes by accident.They are very compassion and dedicated in what they are doing.Excuse me for my english but i cant express myself like i speak the greek language.

I think its logically to be a little scared as i was but you should perform the treatment as one.Not just one eye.There is for me no logic to that.And you know what?with keratoconus is there any logic left?Only emotions. you ahve a point to that.But you will see from the doctor that he is the best in what he does.You will understand it.Just remember my words when you will discuss with him about your options and your problem.Anyway,i dont know what else to write.If you like when you ll come in Athens i can see you and talk from close.

All in all,your will have for two weeks some haze and with days this will fade away.During the day you will be doing whatever you like without glasses or contact lenses,no anything.I start using the computer at about 20 days after the treatment because i was afraid not to do anything wrong with my eyes.We are talking about our eyes here,and who gives a **** about the stupid computer but thats my character and mine beliefs.The first global rule is:Do Not Rub your eyes at all.The doctor will tell you that several times.What else can i tell you??xm.....You will be able to do your job,activities whatever you want without glasses or anything.This is a limited topography guided prk treatment and you only reshape the cornea just a little bit,then you froze it with the x-linking and you will have a result at about 7/10 vision and because i havent seen your topographies if you have a small cone and off central you will have perhaps even more best vision.I have said enough i think, go to Dr K and he will explain it all.He has treated over 200 persons with this treatment since 2002-2003 and the results are all stable.

Best wishes,

P.S If you like you can call me and we will discuss further.You know two years ago i didnt know anything about keratoconus and how i can halt/stop it and even see better without glasses but as you wisely said before i search and search and i think i have found the best treatment.Doctor Kanellopoulos was at New York before and he is only i r know like 3-4 years here in Greece.But for me there are no distances,no languages barriers,no anything.I would have gone even to Mars to find a solution to my problem.Thats me!lol!


__________________
nothing else matters


Veteran Member

Status: Offline
Posts: 47
Date: Mon Sep 17 6:44 PM, 2007
Permalink   
 


How much was the cost to you per eye crosslinking & PRK?

Where did you stay for the 5 days and how much did it cost?

No cost can be put on your eyes I don't want to come across as being cheap. I wish there was some sort of funding for this, Keratoconus is not even reconized in Canada.

I don't need a penthouse suite for the 5 day stay a guest house or a small one room hotel?

I need to find out as much information as possible and as fast as possible so I can book everything.  
Thanks for everyones help on here. I don't know what I would do without this forum and everyone on it!

-- Edited by cloudd at 19:03, 2007-12-22

__________________
«First  <  1 2 3 48  >  Last»  | Page of 8  sorted by
 
Quick Reply

Please log in to post quick replies.

Post to Digg Post to Del.icio.us

www.kcfreedom.org

Knowledge Works