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Post Info TOPIC: What after C3R?
Anonymous

Date: Thu Jul 12 10:36 AM, 2012
What after C3R?
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I underwent C3R last year. My eyesight has not improved, and I have stopped using lenses also as my eyes could not bear them. What should I do now as I feel I am progressively turning blind?

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Senior Member

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Posts: 101
Date: Thu Jul 12 9:11 PM, 2012
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C3R is a trademark of one Dr and has a lot of questions marks over it (to say the least). If I was you I would monitor progression finely so that you may act on it with a proven method to treat it and also seek out a good contact lens fitter is a must more often then not, as well as all the non contact lens options.

Take Care

KR



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Anonymous

Date: Fri Jul 13 10:28 PM, 2012
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When my children were small I would go to the school plays and know it was my child because of the clothing and hair color but could not see the details of the faces, never really realized until later in life that was not normal.

I am sending documents to CA to inquire if i am a candidate for the crosslinking clinical trial.    I have had bad vision since early teenage.   In 2004 I went to the Center For Sight and wanted to try Lasiks but was told i have KC.   Which explains so much over the years of struggling with vision.

After getting fitted with rigid lenses in 2004 my vision was so much better, i could see the blades of grass and the wrinkles on my face again.   However now the vision is getting worse again even with the contacts.  The trouble is that my eyes want the contacts out after so long, and glasses dont do a thing to correct the vision.

I am now 50 year old, and have been through several sets of lenses.   My analogy is wearing the lenses for long periods of time is like putting your foot in a shoe that is too way too small and once you take your foot out of the shoe, there is no way its going to go back in for awhile.

I would like to know if anyone has been a part of the clinical trial for crosslinking and if there are other clinical studies provided closer to South West Florida?

 

CT



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Veteran Member

Status: Offline
Posts: 28
Date: Sat Jul 14 9:58 PM, 2012
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Hi,

I'm sorry to hear that you have had KC from such a young age and that you are still troubled by it (which is not usual in KC!). I do feel that a slight change with the fitting of your contact lenses, contact lenses or this aided by a reduction in your KC with the use of a surgical vision correction method (for example, it has been deemed ok for selected laser surgery for some KC patients in that it maybe the right course of action to take at the same time as having Crosslinking done. However Laser surgery for KC is not availavle in the US and its a case of patients flying to near by locations Europe to take advatage of this treatment).

Recently a member (Emily) posted this below on where someone may find trails going on for Crosslinking in the US.

"If you go to clinicaltrials.gov and search for Kerataconus and crosslinking, it will pull up many centers around the country that are doing crosslinking as clinical trials."

Wish you the best

Kelly



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Naomi

Date: Mon Jul 30 12:20 AM, 2012
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Hello, I read about your scenario and I Empathise. I too cannot wear lenses for long periods. I am currently instilling 2 different medicated drops and a gel before putting lenses in, using drops during wear, and repeating the meds and gel when lenses come out. My eyes still get red and inflamed everyday. I too cannot see with glasses and feel as though i too am going blind (even though I know KC doesn't lead to blindness!). I can relate to what you mean about tat first time in lenses where you can see trees hav leaves, not just green patches at the top! It is so devastating to not be able to chuck on a pair of glasses and get on with life. And even harder to try explain to others that glasses are not an option. I am commenting on your case as I had CXL 18months ago and it did not help with getting me anywhere near to wearing glasses, and even tho the KC seems to have halted in progression, the lens intolerance issue has reared it's head 7 months ago and drives me crazy!! I am now looking at intacs or graft, as hav tried a range of different lenses and medications but to no avail. Good luck!!

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