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Post Info TOPIC: Let me introduce myself: Menno from Holland


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Date: Tue Jan 15 10:53 PM, 2013
Let me introduce myself: Menno from Holland
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Hi all,

After serious doubts whether my healing proces from my Cross-linking treatment was normal or not, I decided to do an international search on this subject to find reviews about people who had gotten the same treatment (as Dutch reviews are VERY hard to find and mostly very limited)

It's now 2 months ago since the procedure was done. First I want to tell you about the rollercoaster-ride all the hospitals, medics and treatments have been so far.

My story starts at around age 12-13: the school-doctor payed a visit to my school, tested sight (which was basically the only thing she tested as far as I remember) and I immediately got a prescription for the GP, to get a prescription for glasses.

To my opinion at that time, the report that I had 'bad eye-sight' as reported by the school-doctor, was
 all to blame on her device, which I had never seen before and did not trust at all.

My GP did a check-up with the so familiar 'circles-with-openings' chart, which revealed that my sight was somewhat like 95%, but really not so bad that I needed glasses: if I was having trouble with reading or would get frequent headaches, a pair of glasses would be a good idea, but as long as I did not have any trouble at all, I would not need them.

Looking back now, that was the start of it all, but as it was so little progression yet, it wasn't noticed.

It would be like this till about age 14-15. In one of the lessons at school I was seated completely at the back of the classroom, and had great trouble reading the whiteboard the teacher was writing on with a good black marker.

'Well, maybe it's time for glasses now.' Was my first thought someday: I then believed that people with -3 where practically blind, so I didn't worry that much.

So, me (and my mom) payed a visit to an optocian, a visit I'll never forget.

I took a seat in the chair with the motorized 'goggles' (that thing with all the lenses in it, as I tend to forget the name in my own language I don't know the english name) in front of me. Left proved to be fine, so he went on with right, and closed off my left eye.

-0.5 he started and asked me what I could read: 'nothing', I answered.

He upped the setting with -0.25: still nothing.

-1,5: still nothing.

I heard him sigh and immediately knew this wasn't right.

-2: still nothing.

-3: still nothing.

-3,75: he placed the biggest numbers on his display, and even then I had to guess what it was...

"I'm giving you a prescription for the eye-doctor, because this isn't normal,' he said, with a sort of fear in his voice.

Well, basically, the eye-doctor in my town was better to be avoided: I had a small checkup, he did some tests with a prism on a stick, told me I had a lazy eye, I was to late to do anything about it and that kids were a gift from God and that you had to be very carefull with 'em.

As soon as me and my mom stepped outside we were like: What on earth was that? Let's go for a second opinion! (and as you can guess, we filed a complain and refused to pay for that 'exam')

And so I went to a different hospital, the hospital where my dad got his laser treatment (not for keratoconus by the way)

I'll never forget the exam by the optometrist with the refractor (or at least that thing that shines a small bar of light on the eye that makes the practitioner see something)

She positioned the device in front of my face, took a look at my left eye and quickly moved on to my right.

I could see her eyes clearly through the optical system, and could see how she looked up in disbelief, frowned and then took a look again. I then saw her eyes getting big as a person in fear experiences.

She stood up from the stool and the only thing she could get out of her mouth was 'Uhm... I'm going to get someone else to take a look...'

That moment, I really thought I would get to hear that I had cancer or something.

She returned with the highest eye-doctor in the hospital she withdrawed from a meeting, and explained what she was thinking that she saw.

The doctor took a quick look: 'Yeah... you're right. Severe keratoconus with ...... (some Latin term I do not recall) Possible sedation needed to take a better look... and to make the ..... better (latin term again)'

I shivered when I heard that! (I now know that sedation did not mean a complete one ;) )

Diagnosis: -8, (with a huge astigmatism, don't recall that anymore) which got as close to -10 as the day went on.

I was in shock, mainly about the fact I would have to be sedated ofcourse, but I then knew what was wrong (and that I, more or less, was basically blind at my right eye) The fact my right eye was constantly 'looking away' when I had to focus on something close by mainly had to do with the fact that sight was so bad, my brains had completely learned to focus their attention on my left eye: it thus had gotten lazy more or less.

I was prescripted for contact lenses: Knowing what I know now, I really don't get why they did that, as hard contact lenses are mostly a disaster for people with keratoconus that had progressed so far already, as the cornea has far increased sensitivity.

To find out how bad my eyes exactly were they used all kinds of machines, and I can still remember how funny I found it that one of those machines gave a wrong reading and the other computer they tried as the first failed, 'crashed' and reported something like 'measuring is out of range'

More or less: my eye was in such a terrible condition, the machines couldn't handle them ;)

To make a long story short: the contact lenses were a disaster. Left wasn't so much of a problem, but my right eye was so used to 'pinching' in attempts to get a clearer picture that the muscles from my eye lids prevented opening them far enough and made it extremely hard to place my lens.

The first 30 minutes or so with the lens in were highly uncomfortable, but once those 30 minutes had passed, I did not even want to think about taking them out again! Such crisp-clear images! I was sad everytime I had to take them out when I went to bed and stuff.

After about 1,5 years of messing around with contact lenses, and especially fighting the battle everytime to give my right eye it's lens, I decided this wasn't an option: the hospital where I was seeing 'treatment' for contact lenses could not help me any further, and redirected me to another hospital somewhat closer to home, specialised in my condition.

The doctor over there had a fairly simple point of view: Scleral lenses* were completely out of the question if I could not even get normal contact lenses in, so my only option was a corneal transplant.

Unaware exactly what that would mean I got a place on the waiting list. I found it quite special that I would get a donor-organ at my age and looking back now I did not completely understand how serious my eye-condition was.

In 2009, on the 13th of January (Yes I was anxious about the date) it would be 'the day'

Thankfully I got some medication to ease my mind as I was scared to death by the procedure that was about to follow.

After surgery, my eye was incredibly painful, and I had a checkup the next day already. 'How on earth can the doctor see anything if I can't even see anything and can hardly open my eye!'

I met another lad there who got a partial corneal transplant (where I got a complete). He was looking confident, did not have considerable pain, and probably more important: no black eye. I was looking like someone punched me up quite good and the people in the waiting room where looking at me with a kind of fear in their eyes (though I was in a lot of pain, that was funny)

The next day was completely the other way round: after doing a small walk in the middle of the night, where I could see quite clearly, the pain dropped significantly. When I woke up my eye had all kind of nice green slimy stuff around it but once a nice nurse cleaned it I could see quite clearly.

I met the other lad on the hall where my 'escort-lady' to the waiting room was waiting for me: he was in a lot of pain and could hardly open his eye(s).

I got fired from the hospital 2 days after surgery and can remember how great it was to get in the car: everything had the same new 'deep-look' feeling as that what I got everytime I put my right contact lens in. Everything had depth again and I surely felt like I was taking huge leaps when I carefully shuffled my feet across the floor.

Things proceeded very well and my doctor was very pleased to see me everytime, mainly because I was the youngest patient she ever gave a corneal transplant: most patients she saw where quite disobedient 40+ people. As I strictly held up to every rule and precaution about what I was allowed to do and what not, and because some enzym which helps the healing proces shows up about twice as much at people of my age as it does at 40+ patients, the healing proces was the best she ever saw.

About 3 years after corneal surgery, and finally things that went well in every aspect, my left eye showed signs of keratoconus progression, quite severe, as it had gone from -0.5 to about -2.5 in somewhat less than a year. By the fact the optometriste immediately went out of the room to get the doctor who did the surgery on my right eye to take a look, I already knew it was wrong.

I was then placed on the waiting list for Cross-linking: as a portion of the treatment involved the same sedation-droplets I had to receive before my transplant (and I can still recall how painfull they were) I was quivering even by the thought of it.

Well, I didn't have any choice and the 15th of November 2012 it was eye-surgery day number two...

 

Well.. so far my introduction...

On to my cross-linking story. I will make a new message for that (if that is allowed) to prevent one long boring message...



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Date: Fri Sep 4 5:17 PM, 2020
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Its good to read your story I hope you are now living your life away from the ups and downs you have experienced. There is far more awareness more now than ever, still there is a way to go. Every good wish



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Date: Sat Sep 5 7:48 PM, 2020
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Just had to say that you have a great attitude and story...I think your attitude has served you well, it was a well written story of your meeting with KC and you fared well!



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