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Post Info TOPIC: My crosslinking experience so far
jr


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Posts: 33
Date: Sat Sep 8 11:48 PM, 2007
My crosslinking experience so far
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Hello everyone!

My name is Julia. I have post-lasik extasia on both eyes. Diagnosed three months ago, all this time I've been considering crosslinking and going through regular check-ups to look for progression. Though my doctor said that by topography I had no significant worsening, I've been noticing that the halos and the blurring increased. So, I went to Germany (I'm from Russia) to ask advice from Prof. Kohlhaas and, if needed, have crosslinking done.

Prof. Kohlhaas said that most of his patients come without previous topographies and just tell that they have an impression their kc is progressing. So, it's the subjective impression that's important, that shows there is some "activity" inside the cornea. I followed his advice and had crosslinking done on my right eye.
The only unpleasant moment during the procedure is epithelial abrasion, other than that, there's no pain. About 2 hours after treatment, I felt the first pain. It was a surprise for me that there isn't so much pain, it's absolutely tolerable and can be reduced to an irritation-like feeling with painkillers. Actually, I fell asleep in minutes after taking the stronger painkiller and slept normally during the first night. I had the curtains in the room closed all the time, but nevertheless they let through some light. I was scared of severe photosensivity, but it wasn't such. Going to the clinic in the sun, even with sunglasses, was very unpleasant, but the dimly lit room was ok. On the second day after treatment, I decided to go for a walk in the evening, which I definitely shouldn't have done. The night after was quite painful. On the third day, I left Dortmund. I had my epithelium healed after four days, but there was quite much haze and vision was very blurry. Managing with one eye was very weird at first, on the first day I tried to pour myself a glass of water in Dr. Kohlhaas's waiting room full of patients, and all the water was on the floor at once! Yes, it's true something happens to the depth perception.

Now, it's 2 weeks and a half after it. There's still some redness and irritation in the eye. I have been using the steroid and the vitamin ointment. The haze has cleared up a bit, but the vision is still very poor. I had 60% vision in that eye before crosslinking, now it's at least 10%. The sim K's went up by about 7 D and the max K went up by about 12 D. These numbers frighten me a little. I know that K values increase in the first month, but, from what I've read, such a drastic increase isn't usual. It seems I had a decentralized cone, on the topography now it looks much more central but... will I get back a vision at least near to what I had before? I do not know. Has anyone here had something similar after crosslinking? weirdface

I was back at work in a week (I am a computer programmer). It wasn't much of a problem, as I have 60% vision in my other eye. I quickly got used to the computer screen, as my crosslinked eye had worse quality of vision even before it. That's the strange thing with kc - I had the same vision acuity, but 3 D difference in max K and noticeably different vision quality.

That's it so far, I'll try to document my progress from now on. smile

Julia




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Phase Two

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Posts: 484
Date: Sun Sep 9 1:47 AM, 2007
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Let us look at the worst case hypothetical we can talk about:


Cornea is Irregular> Contact lens needed for best corrected vision> Crosslinking treatment done to strengthen the weakened cornea> Cornea gets more regular> Which is the best case scenario for contact lens wear> Contact Lens fit better> Best case hypothetical


KC Vision has these qualities:

1) Brightness (due to thin cornea)

2) Contrast

3) Distortion

4) Blurring

5) Multiple images

6) Night-time: glare, halos, star-bursts, ghosting

7) A combination of all the above with others, where the list is not exhaustive or complete in the descriptive words that can be used.


Therefore the quality of vision is important to note I feel when KC Vision is mentioned so that to quantize it.

The fight-back of KC has starting on all fronts for your KC, by how much is not known now, it’s easier at lower grades of KC, but that does mean nothing, because, even before getting to the hypothetical above, there is less in proportion to worry about.

I will contact a friend of mine for you who will give some personal experiance on this.

 

Heaven and earth shall be moved for you because your a member and a friend, don't forget that (!)


-- Edited by QuintriX at 02:21, 2007-09-09

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jr


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Posts: 33
Date: Sun Sep 9 1:24 PM, 2007
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I have to add some detail here: I had enough vision in my crosslinked eye to do without any correction. The only real inconvenience of 60% vision was that I couldn't drive. I had RGPs fitted for me, but I couldn't tolerate them. Not only they felt awful in my eyes, but they added much to halos and ghosting which shifted with every blinking, and the peripheral vision was very blurred. So I decided to keep away from them for as long as possible. If my vision stays around what I have left now, I will have no other way but to use RGPs.



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Phase Two

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Posts: 484
Date: Sun Sep 9 3:17 PM, 2007
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Julia,

The fit of the lenses does make a difference in tolerating them, hopefully the new regularity will be enough for better glasses correction or no correction worn if desired as before. I do understand what you mean, it is a worry if the cone is off centre and noticable what regularity it will bring, it is ture that crosslinking done in the early stages is better... but in saying that it does not mean you will not benefit in some way from treatment.

The toughest thing to find is a real good contact lens fitter, it's tough from the west to the east, that is top priority for best corrected vision.

I hope we can all join hands together sending best wishes as patients for Julia

You are not alone in this journey

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Executive

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Posts: 437
Date: Sun Sep 9 7:45 PM, 2007
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hello Julia!
I wonder how far in Russia do you live? it is such a big country...
My best advice would be - "wait and see". In my experience haze (subjectively) vanishes not in 1 month but in 4-6 months. Objectively it goes away in, I beleive, 3 months. Anyway this process, of post-xross-linking corneal wound healing, is not, in my opinion, well studied. The haze is the indicator of this process: many chemical products are synthesised at this time and they create these optical inhomogeneties that disperse the light. I think the exact cartography of outcomes- a study of which corneal morphology gives which outcome - is to be done in our case. I do not know if it is done or not. It must be done. The key beneficial element for us is the increase of corneal stiffness. In my opinion, corneal shape does not change much. So the vision should not change much, on the up or down side. So wait some more. And then see. One more thing. Do all your measurements on one and the same machine. Since machines are different even if they are alike...

Stay in touch,
yarsky



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yarsky
jr


Veteran Member

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Posts: 33
Date: Sun Sep 9 9:22 PM, 2007
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Hello Yarsky,

I live in St. Petersburg. Btw, Sajeev wrote me that you are originally from Ukraine. From which place in Ukraine? I've got lots of relatives there.
You know, most of what I perceived as haze vanished in the first days. Now, it's more like blurriness, multiple images and reduced contrast - all the effects of increased K values. Yes, you're right, there should be a study about corneal morphology and x-linking. It's evident that symmetry increases, but.. in time I believe there will be more info about how different patterns of corneal morphology are most likely to change after crosslinking.
Yes, I do the measurements on the same machine, and I guess now I will have to do them quite often, because doctors are very curious as crosslinking is something new here :)
Yes, I'll wait and hope in time my K's will go down, I know it's likely to happen. However, I'm trying to get myself accept the thought that I may not get back near to what I had before, only time will show.
What about you, was your vision in your first month obscured by what you saw as haze or it was just blurrier?

Julia


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jr


Veteran Member

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Posts: 33
Date: Sun Sep 9 9:28 PM, 2007
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Hello Sajeev,

I just want to stay away from RGPs for as long as possible. Maybe I'll learn to rely on my good eye, if my vision on the other one gets a little better, or I'll be able to get some correction with glasses. I know I'm prejudiced after a negative experience, but something in me is very much against putting this piece of plastic in my eye.

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Executive

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Posts: 437
Date: Mon Sep 10 9:13 PM, 2007
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Hello Julia,
I do not totaly agree with your use of the "negative" wrt to your experience. First, it is too early to judge. Second, the aim of x_linking so far has been to stiffen the cornea, not to improve the vision. Of course, not to worsen it - is its another goal. Why does the cone become steeper in some cases, that must be understood by the docs' community and explained to us, the patients. I think, that if the cone is not centered, one has beter chances to have more normal vision. Once the cone becomes centered, as a consequence of cross-linking, the vision may get, in my opinion, worse (because it starts to interfere more with the rays that come through the pupil, refract them more)....As an advise I can suggest insisting on work with an optician in the following way: try glasses; BUT, do not try to make your vision pefect with them; try to find a combination that improves your vision a bit; than a bit more...do yo see what i mean? But not make it perfect...The opticians try to get you the exact correction with lenses. So do not opt for the ideal solution, try to optimise it differently...I dislike lenses as much as you do.
Courage,
Y.
PS. Yes I'm from Ukraine, Kyiv. St. Petersburg is gorgeous...

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yarsky
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