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Post Info TOPIC: Randomized to the FDA Trial today


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Date: Wed Feb 6 11:48 AM, 2008
Randomized to the FDA Trial today
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Thanks to all for your messages and sharing your experiences. My wife has post lasik ectasia and today will be randomized to the FDA Crosslinking trial. If she is in the experimental arm, she will have crosslinking in her left eye. If she is randomized to the control arm, she will have to be observed for 3 months then have the procedure. Your messages about your experiences were extremely helpful. Thanks!

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Date: Wed Feb 6 10:51 PM, 2008
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Since your messages were so helpful to us, I wanted to share our experience in hopes that it may help someone else. We went back to the physician again today for the randomization. They repeated all of the scans, tests etc that they conducted on the visit to determine eligibility. They also took pictures of the eye/cornea. They gave a xanax and 2 motrin, put some drops in her eyes and then she relaxed and waited. About an hour later we learned that we were randomized to the treatment arm and her worse eye would have the cross linking. She then went back to surgery room to have the epithelium abraded and she was given the riboflavin drops (30 min) and then more pictures. We could see the riboflavin penetrate. Back to the surgery room, with the UV light and more drops every 2 minutes for 30 minutes. Then back for more pictures. Drops were placed in her eyes, and a bandage contact lens was put in place. We got 3 different drops, and a rx for pain meds and then were were able to go home. My wife was hungry and the anesthesia was still working so we got some lunch and headed home. While driving home the anesthesia wore off, her eye became sore and watery and she had difficulty with light and keeping it open. She immediately went upstairs, closed the curtains. We put drops in her eyes and then she went to sleep. So far, just as planned. Let's pray for a peaceful and restful night.

-- Edited by tomt at 22:51, 2008-02-06

-- Edited by tomt at 22:52, 2008-02-06

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Senior Member

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Posts: 148
Date: Thu Feb 7 2:18 PM, 2008
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Hi Tom, thanks a lot for the detail your write and don't mention it ! we are glad to write and listern... but we like to hear what people say about KC then telling people what it is (as thats the way to learn)

We could move this topic to the "after Crosslinking" section if you wish it to be

Let me take this opportunity to say welcome!

K

-- Edited by Kane at 14:21, 2008-02-07

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Veteran Member

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Date: Fri Feb 8 12:01 AM, 2008
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Wishing you and yours a speedy a recovery. 

Are you considering getting the other eye done for your own sake?

Also, the procedure that the FDA is using, is it a partial epithelial scrape or full off?

THank you,



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Simon


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Date: Fri Feb 8 1:29 AM, 2008
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Thanks for the good wishes. My wife was able to sleep most of the evening, took one painkiller, and then slept all night. She woke up a little bit swollen this morning but the pain was not that bad for her. A few advil took care of it. We went back to the doctors today and everything looks fine. The sun came out a bit and she was photosensitive, covering her sunglasses with her hands. Otherwise, a very uneventful day. The doctor said to expect that her vision would get cloudy over the weekend as the epithelium grows back. We return to the doctors on Monday to get the bandage contact lens out and a more thorough exam.

Simon- I believe it was the full epithelial scrape with alcohol. With the trial, they will do the other eye in 3 months.

Thanks Again!

-- Edited by tomt at 09:55, 2008-02-08

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Date: Sat Feb 9 2:19 PM, 2008
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Day 3 update: The cloudiness/haziness has become greater. Makes it difficult for her to do much. Although the doctor said she could begin driving, she said that she did not feel comfortable doing so as she has little depth perception and was afraid she would be too close to the center of the road (her left eye had the crosslinking). She was able to workout and run on the treadmill...I was happy to see that as I am sure she is going a bit stir crazy. This morning, reading the paper and looking at the computer was more of a challenge and after a few minutes she stopped. The pain has diminished, more of a scratchiness and a headache. Seems like her experience is similar to what we have read on the board.

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Senior Member

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Date: Sat Feb 9 4:30 PM, 2008
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Hello Tom,

Our experiance over here is that vision does get effected during the early recovery before its comes round again. It is six months roughly when you can say recovery has fully finshed enough, but vision should come back well before than. I know you know this but just want to comfirm it from our end.

It is good news for everyone in side and out side of the US for this new era that has started. It is approved in Europe last and is routine for the Dr's who has the most experiance (over 10 years (and the lab testing started well before than 1994) with crosslinking and eithics committee approved since 1998 in Germany for use for Keratoconus patients)

The recovery with any corneal intervention can take easily six months, its a slow proccess for the cornea to heal, just think of the time it took for KC to take hold and take its effect, its all very slow when it comes to the eye it seems. Keep busy during this time otherwise it is "dead-time" get talking books or do the things you always wanted to do but did not ge the time ! (get out your record/cd collection !)

Regards

-- Edited by Kane at 16:31, 2008-02-09

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Member

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Date: Tue Feb 12 1:10 AM, 2008
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Hi Everyone,

Day 5 post cross linking. She says pain is just dull and aches a bit, perhaps similar to prior to crosslinking. Went back for the removal of bandage contact lens, feels much better with it out. Epithelium is healed. It was a sunny day and minimal photosensitivity. There is some minor haze, says it is not too bad. Doctor did a repeat Ocular Response Analyzer and it appears that things have improved some since the crosslinking, showing a strengthening. Early, but promising. A good day!

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