All of us Vs Keratoconus


Members Login
Chatbox
Please log in to join the chat!
Post Info TOPIC: My crosslinking experience so far


Senior Member

Status: Offline
Posts: 124
Date: Fri Sep 14 2:40 AM, 2007
RE: My crosslinking experience so far
Permalink   
 


Hello julia.You are a kc fighter and i hope all will turn out well.You know it is really sad that you cant have a communication with your doctor.The best seller book Emotional Intelligence explains that when you go to a doctors office,clinic you have in mind to ask at least three questions.In the end you have only asked 1 and half and thats maybe.So,when you have questions that are not answered you are full of anxiety,stress and i r know what because of the doctor that he doesnt treat like one of a kind.

When i go to the institute i literately bombardized with questions Dr Kanellopoulos.So when i was seeing the pentacam values and the image of the topography i asked him and he told me that in the first two months of the treatment you cant jump to conclusions.He also told me that sometimes the data might be misleading.That is why i say the cornea fools pentacam.All in all,you certainly must wait.Time will reveal things and the better corneal map.I am sure better days will come but you must visit your doctor or call him.I am saying it again that here in Greece, Dr Kanellopoulos institute has a 24 hour line so if anything happens you can call no time what.Its all day and night someone to hear you out.When i have performed the treatment i called a million times.lol!you know i am young and its the first time in my life i worry so much..Now i think i have matured like i r know how many years.The people i know are taking for granted their eyesight and we are the ones to think it everyday and hoping for the best.

Also,i would like to pointed out that i think pentacam is much better than the orbscan because i can read better the elevation map and the K readings.It is very simple.This topography is before the treatment i suppose.I can say it to you that i am positive from your topography that you were able to do the same treatment with me.X-linking and Prk.With 6/10 ucva and bscva you would have great results.I need more data like 420 microns is minimal corneal thickness or at the pupil center?Thats why i choose pentacam,because it gives you so much data.Also,the amazing thing is that it diagnosed keratoconus and it says the progression level you are.Like moderate-severe KK 2-3 stage.It really helps the doctor and in the topography guided PRK treatment collaborates significantly with the laser so the laser knows exaclty(like a footprint) how to reshape the asperic cornea causing you because of the irregular astigmatism the bad vision.You have the best result because of that unique and revolutionary collaboration(Pentacam-Allegretto Wavelight 400 Hz Eye Q trakcer flying spot laser-With a prize for the best laser by the FDA).Especially for aspherical like keratoconic corneas.

I hope for the best and with time cross-linking will do its work...dont you worry.

Best Wishes

P.S With keratoconus we had a paradigm shift..plz learn more about it..

-- Edited by QuintriX at 15:27, 2007-09-15

__________________
nothing else matters
jr


Veteran Member

Status: Offline
Posts: 33
Date: Mon Sep 17 9:58 PM, 2007
Permalink   
 

Here's a little update.

Today I've received an email from the doctor who treated me, Prof. Kohlhaas. He says the topographies done 2-3 weeks after the treatment are not valuable because of the irritation of corneal surface, so I shouldn't worry about the change in K values and just wait.

Zeus, I would be very very happy to have stable 6/10 vision and use glasses correction when needed. As I already mentioned, x-linking and PRK are surely a huge step forward in KC treatment, but for myself I wouldn't have chosen another surgery without unavoidable necessity. Yes, I've read about pentacam and no doubt it's also one of the best nowadays... but time will pass until they appear where I live and can be regularly examined.

__________________


Senior Member

Status: Offline
Posts: 124
Date: Thu Sep 20 2:32 PM, 2007
Permalink   
 

Hello julia.Excuse me, in the topic united we stand, but when you have all this time facing this difficult situation and trying desperately to find the truth about kc and you can save your eye sight and your life you cant put up with a lot of things.Our vision is the best sense we got in my opinion and i dont compare it with price tabs.

Anyway lets forget about that,i was using glasses before the treatment and i havent realized back then what contrast sensitivity means.Now i am realizing it because i can see at the day time mostly,because there is more  light i suppose,the big difference in my sight.

Its difficult to understand when you dont have it.You only can imagine it.Its like a tv with no adjustment of the colour,of contrast,of brightness.From my research with kc ,we are losing this important things.Its another story to see something from distance and its a whole another story to see  sth in distance with the contrast you should have.Its obvious that Kc causes low contrast sensitivity and this thing we cant understand it pretty well.Now i see,and before the treatment i could see and done things ok but now i am seeing a whole different.I go to places that i have been before and i am seeing them more live,more powerful in my eyes,with more colour..I cant express my self quite enough because these things you cant tell them with words..its the feeling..and because you cant tell them with words its difficult to understand what low contrast means.In vision you have quantity and quality.I had before 7/10 vision with glasses but not quality.I was able to drive at night and before the treatment i was doing all my activities but it didnt cross ever in mind about the quality,about the contrast.

To make myself more clear,its like a white t-shirt that you have washed many times and its colour has been fade away.You know its white but it will never be as a whole new brand t-shirt..thats our vision like with no quality.Anyway,this matter needs a better research and of course if its able to gain back our vision sharpeness and liveness with something.

I have gained it certainly from my left eye which the cone was a lot smaller than my right and i gained it from Wavelight allegretto eye-q laser.I think it has reshape my cornea the best way it could and also because i was very stable when the laser beam was coming to my eyes.I remember the doctor telling me ^Bravo Harrys^.Its important to stay stable and not to move your eye during the procedure.I know its once life time experience and you can watch the video at the site i have mentioned but you must experienced it to know what i mean. 

I think that with quality vision you see a whole different world and in my opinion this thing makes you happy.Also,i have heard and read stories about persons who had undergone laser procedures and they have lost their quality.They are20/20 but they are complaining about they dont have the vision before and they dont have the knoweldge to understand about quality.Or others which they dont know anything about quality and they believe that thats everybody they see.Quintrix one time has mentioned a special thing about examining contrast sensitivity but i dont remember the  web site.Maybe he can help us telling it and reading more.

Some people claim that reading more about kc than you should makes you more distressed and more nervous and anxious.I cant give a clear answer to that.Its just if you want to compromise or make peace with your kc.I r know.These, i believe are difficult questions.

__________________
nothing else matters


Phase Two

Status: Offline
Posts: 484
Date: Mon Sep 24 4:30 AM, 2007
Permalink   
 

Here is the link Zeus you mentioned...

http://www.vectorvision.com/

Every good wish

__________________


Executive

Status: Offline
Posts: 437
Date: Thu Oct 4 10:48 PM, 2007
Permalink   
 

Julia, how is it going?

The best way to check the state of your corneas is to go back there to Dortmund and show it to Kohlhaas, do the measure on the same machine, etc. But not now, for it is to early. in 5-6 months....Then you should compare with the orbscan before the op....That was what I did both times...


As for "cornea fooling the orbscan" i think it concerns mainly the pachimetry. it is a refraction-reflection phenomenon, in my opinion. Orbscan sends a ray of light. This ray is refracted and rflected twice: first on the anterior surface than...one would say on the posterior surface of the cornea, but in case of hazy and keratoconique corneas it is not. In these cases the ray is reflected second time on and from the optical heterogeneties, like Vogt striae or haze particles, effectively reducing thus the pachimetry data. I posted somewhere here a research article about this, long time ago...The conclusion is that it is a good method in case of regular corneas but in case of sick ones, as ours, one should prefer ultrasonic methods...

Regards,
Y.

-- Edited by Yarsky at 22:50, 2007-10-04

__________________
yarsky
jr


Veteran Member

Status: Offline
Posts: 33
Date: Fri Oct 5 8:09 AM, 2007
Permalink   
 

Hello, Yarsky!
Unfortunately, no good news for now. It's 1,5 months since crosslinking. There were some fluctuations for the better at the 1 month point, vision varied from morning to evening and got to about 0.4. Now it's back to where it was, about 0.1-0.2 and stable during the day and from day to day. (I had 0.6-0.7 before crosslinking). There's very little haze, this is due to the rise of K-values.

Maybe I'll be go to Germany again in December. If I get there, I'll surely try to get to Prof. Kohlhaas.

I see your point about the orbscan. I only can add to this that Prof. Kohlhaas said that early topographies are invaluable because of surface irritation. I think he means that the surface of the stroma isn't "smooth" after crosslinking and the wrong angles can distort the light on its way out of the cornea.

__________________


Executive

Status: Offline
Posts: 437
Date: Fri Oct 5 11:25 AM, 2007
Permalink   
 

That's not good news , Julia...

I realy do not know how to explain such a fall in your vision...

It would be an extremly valuable piece of information for all of us if you could post here your orbscan pre-op and your orbscan post op, done on the same machine. This will be the only way to give an objective measure to your experience...

As for the smoothness - it is smooth, but hazy, this creates huge biaises in orbscan results.

best,
Y.

__________________
yarsky
jr


Veteran Member

Status: Offline
Posts: 33
Date: Fri Oct 5 1:00 PM, 2007
Permalink   
 

Unfortunately, the clinic to which I regularly go only has an older placido-disk based machine. When I go there next time, I'll take with me a copy of topography to post it here. I have the older ones from this machine, too.

The only clinic with Orbscan here is an expensive private one. I've been there once before crosslinking and done the Orbscan topography which is posted in this topic. I plan to go there when it will be at least three months since treatment, to have a more "realistic" Orbscan done.

I still hope for changes in the next 5 months. I have post-lasik ectasia and Prof. Kohlhaas said that in these cases, the symptoms in the process of healing can be more expressed.

__________________
«First  <  1 2 3 4 58  >  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