All of us Vs Keratoconus


Members Login
Chatbox
Please log in to join the chat!
Post Info TOPIC: After X Linking - Jan's story


Veteran Member

Status: Offline
Posts: 51
Date: Thu Aug 30 3:48 PM, 2007
After X Linking - Jan's story
Permalink   
 


Hi there

Sorry for not being so much online, but here I am again with a few finale words.

I would like to describe my after-x-linking experience to all of you. My experience with this treatment so far is it is pretty harmless and you don't run any high risk by getting it done (if you are a candidate for the treatment). Also, it does seem to stabilize the cornea in almost all case, but nobody knows for how long. However the treatment alone does not give you 100 % vision again. This would require a much more refined and invasive surgical technique which "shapes" the cornea in a nice symmetrical way. X-linking alone can not shape the cornea in a symmetrical way, perhaps if combined with intacs, laser or something else? We shall se what the future brings. 

The stabilization could last for 2 years or maybe for the rest of my life. However, as a KC-patient I have realized that I do have mutating eyes for the rest of my life with or without this treatment (I was just programmed this way, which I finally accept now...heh). In my experience getting x-linking done, changing my diet, swimming, and going for regular check-up at the hospital have been a good way of bringing my mutating eyes under some sort of control.


Actually, the only thing not under my control is that I might not be able to continue with my studies. Well, I have decided to give it a last try, but if I get too tired and get head-aches whenever I am reading 1 page in a book I might consider doing something else...but this fact doesn't bother me anymore.


Also I should mention in more detail: I started swimming again for approximately 1 hour 2-3 times a week. First I was a little afraid of chlorine and red-eyes, but I haven't experienced any problems so far. So, now I continue swimming on a regular basis in chlorine or salt water with or without permission from my good friend keratoconus.

Take care, Jan


-- Edited by Jan84 at 16:32, 2007-08-30

__________________


Executive

Status: Offline
Posts: 397
Date: Thu Aug 30 4:30 PM, 2007
Permalink   
 

Hi Jan,
Great to hear from you again. I very much hope that you can find some way to continue your studies... do you get headaches etc even while wearing glasses?

It is very encouraging to read what you say about going about your daily life without the permission of KC... I think half the battle with keratoconus can be won if we just relentlessly live our lives as close as possible to normal. If we let KC control what we can and cant do then this only allows the mental stress part of the disease to dominate.

I wish you the very best for your continued progress,

Hari smilesmilesmilesmile

__________________


Veteran Member

Status: Offline
Posts: 51
Date: Thu Aug 30 4:50 PM, 2007
Permalink   
 

Hi Hari,

Thanks for your reply!

So far I have not experienced any head aches if I sit in front of my computer or if I read a book (I just started studying againg, so pretty hard to say anything yet). But I do get tired and need to rest (take a power nap now and then). But I probably would get them if I were in a stressed situation, like an exam.

The problem with Keratoconus is that our brain is compensating for the refractive errors all the time, which means there is very litte brain power left for anything else. When you read you don't just see the symbols and think "oh well, whatever", you also have to "think" about the symbols and "translate" them...this is the problem...we just don't have this much brain power...hehe smile.gif

Best regards, Jan

__________________


Phase Two

Status: Offline
Posts: 484
Date: Sat Sep 1 9:48 AM, 2007
Permalink   
 

Hello there Jansmile... sorry it took a while to reply to you buddy, i have been going on trips with friends, and there are a few more to do, but just had to take out some time for a friend of ours who was someone who really did light up the community with your account of Keratoconus. Thank you very much for that and it can be seen from reading your threads that you was 100% correct, and also much better off now.

I am glad your wearing glasses now with-out the prescription having to be chased. Make sure they are hi-index aspheric glasses... also the next is very important... in the testing for glasses... i will list what my personal experiance is:

1) Refraction for glasses must be slowly done for a KC patient.
2) I was tested with an astigmitisum chart I have never seen before by a very smart optician who uses a chart full of black circles. All I need to tell her was if the circles looked more round with the diferent lenses she was testing me with... WOW that test was something else as I now have the best pair of glasses ever for 20/20 vision. This is even when i went to another optician friend of mine and it was not quite as good... its all due to these two points i make here which does help both the patients and optician in the end..

So my advice is to talk to opticians in what equipment they have to test for astigmitisum correction. Also i have found two optician testing the same eyes (on the exact same day) can give two different results (I read that this is a probelm for those who wear glasses for "normal" reasons too, but its a much bigger problem for us)

Also i think you would really like Kera-soft lenses. I know anything in the eyes is not a very good thing to do if it can be avoided... but with routine check ups it should be fine as thats why the check ups are for... Ultra-Vision will send out for free (postage not inc) a fitting set anywhere an optician requests to have one.

All in all...if you feel ok as you are as your very close to 20/20 yourself then thats the best course to take, but i just wanted to give you some more details so you will know about them.

On a completely different note... just to keep the TV intro video connection to posts running on this postsmile ...this one is due to another famous "Jan" and also because of your musical connection as well. When you feel up to it, we can be your first gigsmile




-- Edited by QuintriX at 21:50, 2007-09-02

__________________


Veteran Member

Status: Offline
Posts: 51
Date: Sat Sep 1 1:11 PM, 2007
Permalink   
 

Thanks for your encouraging words and thanks for your advice! smile.gif


__________________


Executive

Status: Offline
Posts: 437
Date: Sun Sep 9 8:01 PM, 2007
Permalink   
 

Hey Jan!
I like your observation on how the imperfect vision promotes guessing up the images and how actually tiring this activity is. It is very tiring, I agree with you completely. But even if it is tiring in this way, it is less tiring this way then the way you are tired when you wear rigid contact lenses...Now this sort of tiredness - rigid contact lens wear tiredness- was unacceptable in may case. If I can improve a little, not to make it perfect, just a little bit better with glasses - it is a win...

-- Edited by Yarsky at 20:03, 2007-09-09

-- Edited by Yarsky at 20:04, 2007-09-09

__________________
yarsky
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.

Post to Digg Post to Del.icio.us

www.kcfreedom.org

Knowledge Works