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Post Info TOPIC: My experience from keratoconus diagnosis and treatment


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Date: Sat Jul 2 12:48 PM, 2016
My experience from keratoconus diagnosis and treatment
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I got diagnosed with Keratoconus at age of 20 and the doctors told me to use stable contact lenses. In my case I am almost intolerant to lenses and my eyes become very red. Despite this, I used lenses for 4 years. Many times I could have pain if I had my lenses on, it felt as if someone skratched my eye with a knife. When this happens I have no choice but to remove my contact lense. Usually it was my right eye that had this painful sensation but sometimes my left eye could have the same problem. 

Because of this I started to use new lenses that were much smaller and more comfortable, but after 1 year of use they also started to be painful. It was around this time (4 years after i got diagnosed) that I went to the doctor again for an routine eye-check. Basically up to this point the doctors told me that I should wait and see if my keratoconus gets worse and then I can just do the crosslinking. But I thought that this would be not needed to do until like at least 10 years in the future and that the progression would be really slow. However, my doctors did not inform me that the degeneration of the cornea can be very rapid, in the order of several months. And at this point they noticed that my corneas are even thinner and more cone shaped and they said that I should do corneal transplant! 

This made me very furious because I was completely unaware that my eye condition was getting worse, they should of told me to do the crosslinking the same day as I was diagnosed. I can't find any words for how stupid the treatment of Keratoconus patients is but the doctors always tell their patients to wait and see which is the same as telling a cancer patient wait and see what happens with the tumour...lol. The doctors know very well that Keratoconus is a degenerative disease which means that the cornea will become thinner and more cone shaped with 100% certainty. I am completely blown away by this stupid way of treating keratoconus patients. 

 

I decided to do crosslinking at a private clinic because they had the latest equipment (Avedro) and I trusted that I would get the best results there. I did epi-off CXL on my right eye in June and in Jule on the left eye back in 2015. And now one year later I am glad to say that my corneas are stable and that my vision has improved. I have an visual aquity of 50% with glasses. The doctor in this private clinic told me that I should not wear contact lenses since they can damage the cornea. 

I am considering to do Visian ICL implants on both eyes since they claim that I can achieve a very good visual aquity with them. If this really works I could perhaps have 80-90% visual aquity which would be practically normal vision as any healthy person. 

 

 



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Executive

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Posts: 155
Date: Sun Jul 3 10:44 PM, 2016
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Well done, its great that you are on top of KC and your well on your way due to YOUR patient research which you have done.

Best wishes, Wayne



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Posts: 73
Date: Sun Jul 3 10:49 PM, 2016
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It sure is uplifting your story and its good you took action as soon as you was ware of the situation...many are not as ware due to no fault of their own...its due to not getting told to them about all the available options at the starting pointing.



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Date: Mon Jul 11 12:19 PM, 2016
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Well done dandymandy!

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Date: Tue Sep 13 9:47 PM, 2016
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I have now implanted Visian ICL lenses on both eyes. The procedure was about 20 min/eye and painless since I was under anaesthesia. I have managed to obtain 40% better vision that with glasses and I feel like I can see much more vividly, especially on long distances. There is more depth to the visual experience. According to my doctor my visual acuity is going to improve the coming 6-12 months. But I am already satisfied with the visual aquity that I have, I can drive car and pursue normal day activities.

However the ICLs seem not to remove the effect off "double vision" which I experience the most when I look at traffic lights. I think my brain will not be able to filter away these effects. When I used contact lenses I did not experience this kind of double vision since they flatten the cornea, but on the other hand my eyes get red and irritated by them so this method is not an option. Also they tend to damage the cornea even further...

However I am happy with the results and would like to encourage other people to do the same instead of doing a corneal transplant.



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Date: Thu Sep 29 6:25 PM, 2016
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What ever you discussed above is same as his research there is already product. It is called "clinical nutrition".



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