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Post Info TOPIC: Blogging my experiences.


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Date: Sun Jan 25 5:20 PM, 2015
RE: Blogging my experiences.
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Hello all,

Today is day 4 post op and it has been a turbulent few days to say the least. Everyone reacts differently to KC with both symptoms and experiences, no two things are the same. My cross linking experience has been horrific in terms of pain. The procedure itself was fine, slightly weird seeing my epithelium being scraped off but never mind. I will keep a blog like I did with the intacs so here goes.

Day 1.
Finished the surgery about 1230 and arrived home about 1400hrs. I was very docile, slightly dizzy and feeling slightly nauseas, but I attribute this to the joinery mostly. The pain came on about two hours after I left the hospital. It was the worst experience of my life. It was a mixture between sunburn on the eye, having grit trapped in it trying to get out, a naked flame being held upon your eye. Also the headaches were immense as well, due to the swelling of the area the entire left side of my head felt like it was going to explode with molten lava. I managed to get some sleep, around 6 hours in total. Light sensitivity, well I could not even open it so about says it all.

Day 2.
Symptoms were a lot more manageable in the day. I was loaded up with drugs so feeling slightly woozy. The pain resurfaced around 1500 hrs and persisted until 0700hrs the next day. This is when the pain peak and was the most uncomfortable of my life. Awful. Light sensitivity was bad and could only manage a few seconds of my eye open and that was the good eye at that.

Day 3.
Spent most of the day on pain killers. Pain had subsided an awful lot and I could open my eyes for a fair bit. Corneal haze was ridiculous, vision is incredibly blurry. It seems like you are surrounded by thick fog for the most of it. I couldn't even see my hand in front of my face. Slept for about 14 hours today.

Day 4.
Pain a lot better practically unnoticeable, can hold my right eye open for extended periods and my left is getting better with regards to light sensitivity but I am not pushing this and letting it adjust when it is ready. The haze is still omnipresent but I feel that it has got slightly better, I can just about make out the keys in front of me by just using my left eye.

The only weird thing is my double vision, I had double vision before surgery but this is ridiculous, it is completely lateral and seems to move when I concentrate on an object. I think this has a lot to do with my contact bandage though as I think it is moving over my eye and with all the medication which it has trapped underneath, I'm hoping to god that this is the reason and it goes back to normal in a few days after my contact lens bandage is taken out this Thursday.

Overall I am happy I have done it, come a long way since I first made my blog and know that I am still two years from where I need to be taking into account total healing time for CXL and the very likely option that I'll get topographical laser. Hope you are all well.

Cheers.

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Date: Wed Jan 28 5:53 AM, 2015
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topographical laser ? what will that try and achieve?



-- Edited by allrounder on Wednesday 28th of January 2015 05:54:22 AM

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Date: Wed Jan 28 11:15 AM, 2015
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That will normalise the shape of the eye more. Hopefully achieving more regular vision.

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Date: Wed Jan 28 12:08 PM, 2015
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so is that topographical-PRK?

 

Why wouldnt you do the t-prk+cxl?

or it could be called the Athens Protocol

 

are you planning on getting cxl with topographical laser?

 

did your eye surgeon mention any of that.

 

im getting cxl in less then a month .I noticed my vision long distance changing about august and then around november lights were brighter etc.so i went to the optometry and they gave me glasses which didnt change the lights at all and i went back and they said i got keratoconus.Then after the christmas break i went and saw a eye surgeon and they said we could wait on the eyes and see if it progresses but i said i wanted to the cxl.I have greater halos in my right then in my left.I asked about the athens protocol but he said i could do it but it requires to get rid of some of your cornea and he said at this stage of your keratoconus it isnt worth it.....sorry grammer is probably wrong but im tired .

 is the thing you getting gonna help with the halos?

I want to get cxl in both eyes and see how life is with contacts if it is tolerant etc.Then when more research comes for athens protocol or maybe new procedures i might think about that.

also good luck on the recovery

 



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Date: Wed Jan 28 2:37 PM, 2015
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Yes it is the same thing. Not really aimed at fixing the refraction just the shape of the cornea. The reason that I haven't gone for the Athens protocol is a variety of reasons. Firstly being that my consultant doesn't favour it from the outset as he's not the biggest fan of reducing the tissue straight away. I should mention I have had intacs 6 months ago. They have greatly helped with my ghosting. I still have halos and light streaks but with contacts now it really helps me and I get by, sometimes I forget I have KC. If I am not happy in a year or so from the vision my consultant will do TPRK at that point, which I probably will go for as I do not want to wear contacts in the first place.

Well it is great that you have caught it early enough, my right eye was very good and I did not notice that my left was really bad until it really got fuzzy. However in clinical terms the KC in my LE was still deemed mild-moderate and in the early stages. CXL is a great option, if you have done your research as I am sure you have you'd see the great results. Be warned however that the good vision you have now you will not have again for a long time, upwards of a year as the cornea will have to fully heal from the CXL, especially if you are having epi off technique. But in the grand scheme of things your KC will have stopped progressing and it may even improve your vision in the long run, small price to pay.

I really am too early to say whether CXL will benefit me visually but I'm hopeful. Just have to keep the faith and try and get on with it.

Best of luck.



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Date: Thu Jan 29 4:08 AM, 2015
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i think my right is level 3 and left eye is level 2-3.

I wish i caught it earlier but i was in denial and i thought it was just from being tired but when i got the halos then i was like **** something aint right.

so after your t-prk did they say what it could achieve.

is it life without contacts/glasses?

did they say it will help with the halos?

sorry for the questions it is just there isnt much info on the internet about it

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Date: Thu Jan 29 4:53 PM, 2015
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1 week post op. Had my appointment at Sheffield today. Went really well. Epithelium has fully grown back and my vision is slowly but surely coming.l back also. Think I was around 20/50-100 albeit hazy. Eye was inflamed so has given me some steroid drops to soothe it.

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Date: Thu Jan 29 4:58 PM, 2015
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I haven't had tprk ut just intacs and now cxl. We will do tprk if I am not happy with my vision with contacts. And I am positive I will achieve good vision by conventional standards. They should get rid or drastically reduce the symptoms I get such as halos and ghosting. But its a long process. I am probably 2 years away from that with all the healing. So what I have learnt to do is just relax. Keratoconus isnt like other diseases, it takes a whole lot of time to change due to the nature of the cornea. Like it or not you are here for the long run. I would hazard a guess that like me you are incredibly frustrated and perhaps a bit depressed. Just bear in mind there are options out there to you, talk to a consultant who has good experience with keratoconus and work out what's not. for me, hats maintaining good health in my right eye and getting my left to a point where I don't notice it, not eliminate it. Hope this helps.

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