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Post Info TOPIC: Athens Protocol - My experiences


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Date: Mon Aug 26 12:52 PM, 2013
Athens Protocol - My experiences
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Hi,

I found a lot of posts helpful prior to deciding on surgery, and am still finding people's stories now whilst I'm in recovery, so I think it's only correct that I should share my ongoing experiences.

I decided on Athens Protocol following heavy research on the topic. I had been monitoring my own scans, and had read that min thickness upwards of 500 microns with a max K of < 56 should givean improvement post surgery. SO, when my kmax hit 54 (my thickness had always stayed around 500) I realised I had to jump ship. I decided to go with Dr Kanellopoulos, as he seemed to have the most experience in the area, having pioneered the method. I had also heard that Dr Cummings in Ireland was good.

Unfortunately, by the time I made i to Athens it seemed that my kMax had reached 58 diopters. I'm not sure if my hospital, which was using an old machine, was just inaccurate, or whether the curvature had really jumped in a month and a half. No matter, I was thrown off balance, and had to make a spot decision due to the fact that I only found out when speaking to the doctor 3 hours prior to surgery. I decided to go ahead with the procedure, as Dr Kanellopoulos seemed very confident, and to be honest, what else was I going to do at this stage? The keratoconus was on the move, and normal crosslinking had never appealed to me. I just wish I had gone for surgery sooner (ie. with a kmax of less than 53). Alas, advice from my hospital in Scotland was limited at very best, and the ophthalmologists there just won't see you unless you specifically request it. Kind of crazy when you consider how borderline I was even for normal crosslinking.

Anyway, rant over. Laservision in Athens is a nice place, although I won't lie, it is terrifying being in another country when you know nothing of the language and you are looking to having eye surgery performed. The standard of English is quite high in Laservison, particularly among the doctors/opticians, but there is definitely still the fear that you will miss something in translation. Just make sure you have read up on the expected after treatments (cortico steroids, antibiotic drops, vitamen c, sunglasses, hygene, no water in eye, ETC).
I say this, because it is a VERY busy surgery (although I don't exactly have many to compare to!). Dr Kanellopoulos is very confident, but does seem under intense pressure of time, certainly when I was over there. It's best to have your questions ready.

Now, although my right eye was bad prior to surgery, the doctor said there was a chance that i would get 20/20 following surgery. I don't know exactly what my glasses prescription was before surgery to be honest, but I might try and dig it out tomorrow. It wasn't great I think, but it wasn't awful either - certainly with a new glasses prescription I could have functioned for a while until the prescription changed again.

I didn't go for surgery in the left eye, as vision has remained quite stable over the years, and Dr Kanellopoulos says it is almost a case of monocular keratoconus that I have.

So, onto surgery, etc, itself. 

Surgery was fine, and almost all as expected. There was excimer, wavelight, and finally high pulse fluence (not sure if I have named this correctly) crosslinking. However, at one point during surgery, something that reminded me of collagen shrinkage techniques was used. I saw three white concentric lines (I think) and experienced something akin to a gun blank being fired into my eye. The doctor said this was part of the crosslinking process. I didn't want to press - I know some have been trialing minor collagen shrinkage to improve crosslinking shape. Of course, I could also be completely wrong here.

Post surgery was without much pain, although I had been given a shot. First night I woke up with a very minor burning sensation in the eye, but this could could also be the bandage lens drying out a bit. 
Sight was not great. very, VERY, misty.

It was only after about a week that I noticed that I could begin to letters on the TV (CNN (I think) label in the top left). This was a pretty amazing moment for me, as there is no way I could have seen from that distance before (about 1 metre away) without eye wear.
However, I certainly felt that this vision was sporadic, and would only work on certain things.
My eye healed quick - under 5 days really for 95%, so bandage came off after 6.
VIsion definitely seemed worse after the bandage lens came off.
After about 1 week, I could now make out letters on the chart maybe down to the third line or so. However, I was experiencing strong ghosting, with two strong further images below and to the side. Having read about ghosting post PRK, and wasn't was worried about this, as I thought it was a temporary post surgery issue.

My final topographies looked good (to my eyes). kMAx was down to 49 from 58, and average kvalues were also down. The eye topography looked excellent, with only slightly purplish areas dotted about (I'll upload topographies later). What I didn't realise at the time though, was that these patches would give the eye an uneven/non symmetrical surface.
So, about two weeks or three weeks after surgery, I was seeing great differences. Strangely, when wearing my eye patch, vision was a lot sharper through the eye, enabling me to read lettering etc quite well. The blurriness and glare was almost all gone.

However, since then vision has been deteriorating a lot. I didn't realise what the issue was at first, but eventually I clicked. I was experiencing double vision in the right eye, and my focus distance was reducing day by day. 

This is now the stage I'm at 34 days post surgery. At first the double vision was only affecting text, by now I'm noticing it affecting general objects two, basically giving a blur to everything. Depending on how separate the text is from anything else, I can still read it reasonably clearly, but where text is close together it's impossible to read anything but the top line. 

So it seems I have vertical monocular diplopia. The hope initially was that it was a product of dry eye or hazing, but the doctor I have seen at my own eye hospital (I needed pressure taken) has said that my cornea seems very clear, so she imagines it'll be an irregular astigmatism. These were my suspected thoughts too, and the double vision (or ghost image) is almost always in the same place, below and slightly to the right, with the distance increasing as I pull my head away, and reducing when I lead it forward.

I'm really concerned about this, as my previous vision was correctable to a point and, importantly, with glasses. I am a software developer, and find wearing contact lenses very difficult at work. I was hoping that this surgery would halt the condition, and allow soft lenses and glasses to worn successfully (I never, ever, had hopes of 20/20 anyway).

I know people will say it's early days, but the vision has been deteriorating in this way for two weeks, so I can only assume that astigmatism is worsening (or becoming more irregular) in some way. I have topography scans on Wednesday, and will try and get a soft lens fitted on the Thursday.
Astigmatism was only 1.5 post surgery – if this is still the case, should this be correctable with a soft lens? What should my hopes be with glasses?



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Date: Tue Aug 27 3:02 PM, 2013
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Just wanted to add a few comments - it' easy to get down when in recovery, as your sight is not consistent.  I don't think I would normally have been as negative in my posting as I was above.

 

SO

 

When I called the surgery busy, I just meant that the consultations are quite short.  The  waiting room itself was very relaxed.  I just don't want to give the impression that it is anything like the A&E in an NHS hospital - it is nothing like it.

 

Also, I probably didn't quite underline that if glasses and a soft contact lens DO work, then I'll be elated, and consider the surgery a massive, MASSIVE, success.  The problem with this sort of surgery is you can have brilliant sight one day, and then it is lost, and so it becomes hard to keep in mind what your sight was actually like pre-surgery. 



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Deb


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Date: Tue Aug 27 7:57 PM, 2013
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Talanath,

Thank you for telling your story thus far and there is still very much a story to still be told, as if you read the other topics on doing this type of treatment, patients do report things get better further down the line after some weeks and months.

This is the case with most surgeries and with CXL alone the recovery is said to be at around the six months mark.

You may not have prefect vision but your prescription reduced enough to more normal levels.

Hang on in there!

Debby

 



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Date: Wed Aug 28 2:02 AM, 2013
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Thanks, Debby.

I agree that I still have a way to go yet.  It's strange - I read a lot prior to surgery, but it was still clearly not enough to ward off the depressed days where you believe your eye is regressing, etc.  I feel a lot more positive today, and I think that if anyone can get a good result for my eye, then it will be Dr Kanellopoulos. 

I think the other difficult thing when your sight seems to be in a deteriorating patch, is that you start questioning whether you yourself have done something wrong.  Eg.  "I took eye drops at 6pm instead of 2pm",  "Should I have taken food with vitamen C", etc.  It kind of begins to consume your thoughts, which is when you tend to come online and post. 



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Date: Wed Aug 28 5:28 PM, 2013
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Hiay there Talanath,

You have done great to take your health care in to your own hands and its very understandable that it can be worrying right the way through it all...you got it done for the right reasons as you was comfortable about this method out of the others...but things do dip before they come right round again...be sure that the healing is going on and its ok to post away until that it is over.

Remo



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Date: Tue Sep 3 1:17 PM, 2013
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Than's Remo.

 

Well, I've had a topsy turvy week.

Firstly I had some scans.  From here, it looks like the kmax has jumped up a couple of diopters and the thinness has gone down.  The frontal astigmatism also seemed to go up a bit from the previous scans.  I'm hoping that this is just fluctuations as the cornea settles rather than some sort of regression.

Anyhow,  I also had an appointment with my optician.  And here I had much better than expected results.  In terms of lines read, I  can now read three lines more than I could just prior to surgery.  And she managed to almost eradicate the double vision.  There was still a very small amount of ghosting, but it was almost appearing faintly and then disappearing.  Perhaps my brain was cancelling that image out or something.   So that was fantastic news.  But she also informed me that my astigmatism was only 0.50 which is much better than I expected.  I think the astigmatism given from scans doesn't really correlate with the astigmatism that the optician cares about, or at least the optician said something along these lines, saying the scans may also have been looking at stromal astigmatism. Anyway, the important thing is that this should ok to wear normal soft lenses from the opticians, so this is an absolutely FANTASTIC result if it stays the same or improves.

The only downside so far (and it's one that I don't mind too much about) is that the myopia has increased and is now sitting at 10.  But as long as my vision is correctable then I really don't mind about this.



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Date: Tue Sep 3 1:30 PM, 2013
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Oh, and I should probably add that the astigmatism was measured by the optician as being at 6 prior to surgery, so coming down to 0.5 is amazing!  Just fingers crossed that there is no regression.



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Date: Wed Sep 4 2:26 PM, 2013
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Can anyone tell me why the myopia had increased?  Is this a result of the cornea bulging post surgery?

 

 Is this what the cortico steroid drops are supposed to deal with?



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