All of us Vs Keratoconus

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TOPIC: United we Stand


Senior Member

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Posts: 124
Date: Sun Jul 29 5:11 AM, 2007
United we Stand
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Hello my friends.From the minute i enter this site i consider you all my friends.I am writing and i want to cry...From all over the world we have been together here and this problem has united us like a fist to the heads of those who claims penetrating keratoplasty is the answer and the industry of ^bad doctors^ and companies of lenses.No thats not the answer ,and Theo Seiler has clearly shown us the truth.I come from Greece and i had the chance to meet in my KC eyes Doctor Kanellopoulos.I am 22 years old wright now and i have diagnosed with kc at 20 to 21.When you are so young and you have been healthy from little one you dont think that someone like this rare will heat your door.You cant describe your emotions only your face must be taken a picture when they announce that you have this corneal disease.Only that you think about it like crazy and you cant sleep at nights and you dont know what the hell is wrong.What did you do wrong?And especially when someone doesnt clearly says to you there is a treatment.Garbidge doctors exists everywhere.I have delayed a year to do x-linking.I thank god found the only institute here in Greece that performs collagen cross linking and when i found there is hope an another picure should be taken to see my face.Now,an another institute in Crete is performing x-linking and more doctors are bringing the device.I have perfomed collagen cross linking with a limited topography guided PRK with the  400hz allegretto wavelight flying spot laser.The pentacam in my topographies showed that in my right eye i am KK2-3 stage and my left KK2.My vision acquity at that time were 7/10 with my right with correction and 3/10 in my left and even if i corrected again 3/10 i would see.This is the doctors opinion.I took my desicion and i have done both of them at the same visit because my doctor evaluates that you will have better results with this approach.My minimum corneal thickness were 448microns at right eye and in my left 478.I have so many data that i cant think whats other important to write.I had an oblique cone i dont how the word is written and it was at a direction down the central and wright to the hear.My worst keratoconic eye was my right one but i have better vision than my left eye.The thing here is that with both eyes open i have never in the past tested my self in order to find out my weaker eye and to be suspicious.Sorry for this thought,When i was 18-19 because i have a good memory i remember that when i woke up a day and when i was at the bath i saw my eyes really red and they were itching me like hell.I put some water but again for a few hours i had my hands on my eyes and not knowing the damage i am doing on them i was putting my hands to rub them because i was feeling good.I didnt know the word cornea back then....All my life i dont remember this feeling in my eyes.I was 18 that time.Anyway,i made up my mind and took the desicion to have PRK and C3R at the same visit.You have an option to do prk 6 months after the collagen took place but i performed at the same visit in order not to remove epithelium twice.First,we performed PRK(40 microns only with a treatment zone of 5.0mm) with the laser ideal for asperic corneas and irregular astigmatism like ours.I havent asked any other guys about the simple laser procedure but a little tiny spots of laser were on my eye and the beam later.But not only the beam..The important here is to look at the ^green light^ your doctor says to you but also the cutting edge techonology of his tracking system.Afterwards, the doctor put on my head it was like a helmet the device of x-linking with riboflabin and stayed there for thirty minutes.i dont remember much from the stress i had from the laser to look exactly to the green light.Then the nurse applied a bandage lens to my both eyes and advise me to have them closed.I was given special glasses to protect my eyes from putting my hands,Vitamin C 1000mg for 60 days, sunglasses and exocin and maxidex drops.Five days later i have put out the contact lenses and had 8/10 vision from my right eye and 7/10 vision from my left.The doctor goal to everyones is more than 6/10 or 6/10 just.I was worried through all of this time about my corneal thickness and when i was maken out a topography i was sitting up my patient chair and went straight to the screen to see my thickness...But the first two months doesnt say a lot about thickness.The cornea fools pentacam.You need ultrasound pachymetry to know but its too early.Now 4 months and a few days i have 9/10 and 10/10 i can read with my right eye and 7/10 with my left.Although i have better quality with my left.When i have both eye opened i have this sharpness this clearness of colour that makes me happy but when i compare it each other the right one it hasnt so many quality but sees better than the left.There is a point here that the cone in my right eye was moderate to severe2-3 stage pentacam evaluation as i mentioned before.Topography shows an axis of 25.5 and astigmatism 4.3 in my right and in my left 1.8 astigmatism 124 i dont remember the exact number.Currenlty i have the last topography down in my car.Lol.I dont wear anything in my eyes and i drive at night.When i see the light of the cars i dont have a problem i suppose because i feel comfortable but when i see streetlight i see a little halo but i dont think is something so much annoying.The only problem i had and i was scared i might say were the double vision at the subtitles of the tv screen or in my car speed etc.But now four months it has almost completely gone.The doctor says that i dont need to wear lenses or glasses and i with others are a success story.Sajeev my english friend encourage me to write down my story and i think that he is a wonderful guy.Dont you think??He didnt know me at all,i live miles away from England and he gave me so much attention and listen my thoughts like he was a father to me.I think he is a great like all of you in this site.I found a place that i can express myself and my feelings and learn some critical information.Anyway,i should have written more but i dont know what else is important to write.I am going to post my topos.From the first time i went to the institute and to four months later.There is a video also showing the treatment i have perfomed.  



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Senior Member

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Posts: 124
Date: Mon Jul 30 5:36 PM, 2007
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Maybe my story is a little big and its difficult to read it.If you like you can visit http://www.laservision.gr/US/videos.htm or www.brilliantvision.com and click where it says VIDEOS new in order to see the treatment.The doctor explains it better than me.Three days ago i learnt that collagen cross linking and PRK laser is also now perfoming at Zurich too by the doctors.The place where x-linking is borned.If anybody has a good minimal corneal thickness above 400microns i consider it the best treatment ever.i would be happy to reply to any of your questions that i am familiar with.

-- Edited by QuintriX at 03:17, 2007-08-02

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Executive

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Posts: 397
Date: Mon Jul 30 6:04 PM, 2007
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Hi Zeus,
welcome to the forum... thank you very much for posting your experiences here (yes there was a lot of information you presented so it took a while to absorb everything you wrote :))

It really does seem that cross-linking is finding more and more support across the globe... everyday we read of another clinic that is using it in the fight against keratoconus.

This is all very good news because not so long ago we had very little at all in the way of treatment option.

I personally opted to have mini ARK to treat my KC, actually its interesting because this week I've been talking with a patient who had ARK a few months ago and he is also from Greece.

I have always believed that there is alot of data that is missed out on because we come from countrys that have to deal with the language barrier... that is why its so great to have people like you with very good english who can share their stories.

I was like you when i was younger and used to rub my eyes (If only I knew the damage I was doing...) Also its fantastic that you have found not only a doctor that treats you but also one that listens,

All the best and please keep posting your continued experiences.
Regards,
Hari

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Executive

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Date: Mon Jul 30 10:10 PM, 2007
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Hi Zeus!
I understand your happiness! Me too, I used to keep a lot of data: all topographies, prescriptions, pachimetries, orbscans....All in chronological order. It was and is ivery and very important. The last measurment I did dates back to the beginning of this year. I understand your emotions! Especially if you got that improvement! I personally just stabilised. Now with PRK I may probably have some hope to even better that. PRK is an interesting technique.  But I am well for a while with what I've already got. This is a link that tells more about how PRK and CCL work together.
http://www.ophthalmologytimes.com/ophthalmologytimes/article/articleDetail.jsp?id=418308
Interesting, promising,....
Anyway, glad to hear your cheerful news!
Regards,
Y.

Hari,
friend, nice to see you around! How are you doing? I am still amazed by your courage. As we all know any surgery is a bet on a set of more or less unknown outcomes. I opted for what seemed to me a more sure bet.
Best regards,
Y.

-- Edited by Yarsky at 22:37, 2007-07-30

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yarsky


Phase Two

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Posts: 479
Date: Mon Jul 30 10:39 PM, 2007
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Zeus glad to see you here, my long lost friend ! handshake.gif

Thank you for sharing your story with us. You are young and you are the future, there is no separating that. Your Dr treated you by personalizing the treatment, and not treating you like, just another number/patient.

When its correct to do the treatment, like your reaping the rewards now for, then it was the right thing to do. I respect your Dr very much for looking for a new way for you, (please send him my regards)... and still not limiting your options. Its always... the least invasive treatment which should be tried the first to get you back to your old self and this mission has been acheived.

One time, not too far back it was bleak if you could not wear contacts, things are looking up.

It is a pleasure to meet you Harrys (AKA Zeus) your a great global ambassador.

You have now great, always on vision, please help others in their struggle...

We are pretty much like "Robin Hood"smile (please look him up)smile ...just letting you know about our English mythology (yes we do have some) if you could let me know more about Greek mythology, which I have always had a facination withsmile Thats a fair trade don't you thinksmile

...and your success is a great reason to partyw00t.gifw00t.gifw00t.gif

You have the freedom of the board !!!


-- Edited by QuintriX at 22:43, 2007-07-30

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Executive

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Date: Mon Jul 30 10:48 PM, 2007
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Hi Yarsky,
Thanks for your message.... I'm doing great at the moment. The only thing I'm using for my eyesight at the moment is sun-glasses :) The sun is crazy here at the moment!!!!!biggrinbiggrinbiggrinbiggrinbiggrinbiggrinbiggrin

I have to tell you that I have very much appreciated your attitude toward my mini ARK treatment. I know you looked into it and some aspects didnt convince you maybe but you still have shown nothing but total support for my personal choice. I think thats what keratoconus 'support' is all about... that we all learn from and respect each others decisions.

Thanks again smile
Hari

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Senior Member

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Posts: 124
Date: Mon Jul 30 11:00 PM, 2007
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Hello Yarsky.Great to hear from you.i have read some of your posts and you are quite a guy i might say.So,when i first went to the institute i had in mind to perform collagen cross linking.The thing here is mate that if you have an oblique cone propably small, off the central zone which is very important,the x-linking doesnt make you see better.The doctor explained that you need to have a larger cone in order to see a significant impovement of your vision.Also pentacam,device which makes out the corneal topography advise the doctor what stage the kc is in both eyes.For example i was KK2-3 in my right eye(moderate) and KK2 in my left.When this were explained to me that with the x-linking you only stop the progression of kc.Hey,you might say thats the important thing here and i will agree with you 1000%!!!But,in order to normalize the cornea and to function at your everyday activities i choose to perform his limited topography guided prk laser.He has enough experience as you have read,he has been performing it since 2003.I wouldnt have chosen to do prk in other institute.Sorry,but when you have the chance to meet him you will know what i am talking about.Its difficult to write it down here.He is the first who has started this and it is a scientific innovation.You know Prk is a contradiction for kc.I believe that if it was easy ,others doctors should perform it,but aguess isnt.Also he has a cutting edge laser 400hz Wavelight Allegretto Eye Q flying spot laser and this collaborates with the pentacam device.Nothing is left to luck.Anyway,check out the video i mentioned above.Again i am saying that no else in the world i would perform prk because only he is the leader in that and knows what he is doing.



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Senior Member

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Posts: 124
Date: Wed Aug 1 9:25 PM, 2007
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This is my topographies taken out by the pentacam device.The first is at 15/02/2007.This is before the treatment.i perform the treatment at 21/3/2007.The second topography is at 25/07/2007.i made others since the treatment but this is more close to the ^truth^ because the cornea is now stabilizing.



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