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Post Info TOPIC: Your opinion about my Keratoconus


Member

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Posts: 9
Date: Sun Jan 26 7:02 PM, 2014
Your opinion about my Keratoconus
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Hello everyone and congratulations for your unbelievable forum. I live in Athens, in Greece and from my 17 - 18 years, I have had the known problem of Keratoconus. From the begin the contact lenses helped me to see with visual acuity 9/10 or sometimes 10/10 (20/20). Now I am 26 years old and I have the same visual acuity. The last 5 years I use the same contact lenses, without any change and my visual acuity remains to 9/10 - 10/10 (20/20). Now I will go to change my contact lenses for having better visual acuity. I want to have 100 % 10/10 - 20/20 during night. It can become with better accuracy of contact lenses.

But I worry about Keratoconus progress. From November 2013 and for 1 year, every three months I will follow how my problem is going, with the Elevation Map (BFS), Sagittal Curvalure Map and Corneal Thickness.

My doctor told me, that cross linking is not good because I have very very very good vision for my problem (with contact lenses), and it will decrease it. He told me that after cross-linking it can be 5/10 (10/20). It is true? It will be lower than now for ever or for a period (for example 1 year)?

I want you to tell me your opinion if you have your personal experience or if you are doctor.

Here is my right eye (OD) in November 2008 (21 years old):

PGh10iZ.jpg

Here is my right eye (OD) in November 2013 (26 years old):

WVMi4hT.jpg

Here is my left eye (OS) in November 2008 (21 years old):

iVeak63.jpg

Here is my left eye (OS) in November 2013 (26 years old):

6Is3nee.jpg

Thank you in advance.



-- Edited by Konstantinos on Monday 27th of January 2014 10:38:25 AM

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Veteran Member

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Posts: 53
Date: Mon Jan 27 11:13 PM, 2014
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If things are ok in contact lenses then just stay with them. If you become intolerant to contact lenses or there is progression then you could look in to your options then.

And

The debate on Epi off Vs Epi on...still continues

Megan



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Member

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Posts: 9
Date: Tue Jan 28 10:46 PM, 2014
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The things are 100% ok with contact lenses. Do you know what does 20 / 20 visual acuity mean with contact lenses? I have 20 / 70 or 20 / 100 or 20 /200 without contact lenses. With contact lenses I can live as a usual man and I thank God for this.


I worry only about the progression. Do we know the usual form of the progression of keratoconus in respect of time? It is a linear function? A decreasing or increasing function? Exponential? Or everything is possible?


If it is linear one, my rate of change of the os minimum corneal thickness is - 2.8 / year. In 2008 (21 years old) it was 458 and in 2013 (26 years old) it was 444 (26 years old). 400 will be in 2028 (41 years old). But I know that from 25 years old to 35 years old, an end of progression is expected. So, I think, I will not have problem if the rhythm is linear.

Also, I think I will not have problem if it is a decreasing function. My numerical calculations say that it will reach at the down limit of 435 in my life.

But if it is an exponential or
uncertain function, I will have problems in the near future.

About cross-linking: Why do I think that epi-on is better?

I have not understood if the
worsening of vision after cross-linking is temporary or permanent.



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Do you have keratoconus? Add me on facebook to discuss about our problem and about ... the development of technology - medicine - science. Konstantinos Kantoutsis. I am waiting for you.



Veteran Member

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Posts: 59
Date: Wed Jan 29 1:49 PM, 2014
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I've been told by multiple doctors that keratoconus progression ends in your 40s, not 20s or 30s. I'm in my mid 30s and my keratoconus up until my CXL was still progressiong.

Here is a recent study done on CXL and how vision changed afterwards:

www.youtube.com/watch

Most people's vision stays pretty similar, and a large portion get better. Only a small portion of patients' vision gets worse, and the video talks about what kind of patients those usually are.
For nearly everyone who gets CXL done, their vision is worse a month after the treatment but gets better afterwards.

You need to think not just how well your vision will be after CXL now, but if you do CXL, how will your vision be compared to what it will be in 10 years after more progression?

I would suggest, if you're not sure of your doctor's advice, to get a second opinion from a different doctor.

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