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Post Info TOPIC: Crosslinking, epi-on, mom's blog


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Date: Thu Jun 7 7:16 PM, 2012
Crosslinking, epi-on, mom's blog
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Crosslinking done.  We're home.  My son is experiencing a good deal of pain as we were told to expect.  I am relieved that the procedure is over.  We go back tomorrow for the day-after checkup. 

It took about 2 1/2 hours altogether.  First his eye was hydrated for about twenty minutes, then the riboflavin was applied for an hour.  A technician moved a small round sponge around the cornea, it appeared to be a little smaller than a contact lens.  Apparently this sponge-massage helps the riboflavin get absorbed. After about an hour, the doctor checked to be sure the riboflavin had been adequately absorbed.  Then a small beam of uv light was beamed into the eye in spurts of 15 seconds. (fifteen seconds on, fifteen seconds off) This beaming was repeated for about 1/2 hour. While the beam was on, his cornea glowed a bright iridescent green, like a character in a science fiction movie.

I hope and pray this works. If anyone out there has had success from this transepithelial (epi-on) crosslinking, please let me know.  I am aware that a certain number of people do poorly with this procedure. Right now, the less I know about problems, the better.

I'm writing this blog to help others better understand this process, and also just to express the intense and mixed feelings of relief, fear and hope.

My son is now officially in a USA crosslinking clinical trial, as of June 2012.

Emily_G



-- Edited by Emily_G on Thursday 7th of June 2012 07:21:33 PM



-- Edited by Emily_G on Thursday 7th of June 2012 07:25:32 PM

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Date: Thu Jun 7 9:39 PM, 2012
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I am in procedure room. My young adult son is in chair reclining as his eye hydrates. This takes 20 minutes. Emily_G

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Date: Fri Jun 8 4:28 PM, 2012
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Emily,

How is it going for your son today ?...has the pain reduced ? remember no touching of the eye or showers etc, did he have both eyes done at the same time ?

For youngesters the healing is quicker, and with epi on the eye should settle down quicker as well.

Wishing you the best

Wayne



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Date: Fri Jun 8 6:32 PM, 2012
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Emily, Is it more a discomfort or full blown pain ? Its surising there is pain as the epi is in place...however did the Dr give you eye drops to reduce any pain there may be ? I guess people have diferent thresh holds to pain and even in transepi the epi is getting disrupted and there are nerve ending in the cornea which are sensitive to any changes. If the ey lid is kept still by keeping the eye shut this may help ?

The worst part of the treatment is over...it should get better as the days pass by from now on.

Remo



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Date: Fri Jun 8 11:16 PM, 2012
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Thanks for the reply Wayne. 

Last night and this morning son has been having waves of pain. He did sleep well though.  

Went to doc for check-up today and apparently he has a corneal abrasion.  They put in a contact lens "bandage" and he is no longer in pain.  Doc says that about 1 in 5 get corneal abrasions.

He read the eye charts and his vision seems no worse now, maybe a little better.  (I tend to observe during chart readings).

He is an independent, self supporting adult who lives in another city. He came here for CXL procedure.  Since he is currently "patient", I have been "nurturing mom" for this period of time.  When he returns to his own home, if all goes well, I won't have many KC details to report.

I am glad to be able to write to all of you.  In my daily life, there isn't anyone who has experience with KC.

Emily_G 



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Date: Fri Jun 8 11:56 PM, 2012
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It has been about three hours now and the lens-bandage is no longer controlling the pain.


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Date: Sat Jun 9 7:17 AM, 2012
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Remo - appreciate your reply. He has definitely been having full blown pain. I think your are right about the epi getting disrupted even with transepi (epi-on) cxl. The doctor did note a corneal abrasion this morning. In this practice, apparently 20% of the patients are getting epi abrasions. So I guess this procedure does, in some cases, disturb the top layer of the epi, even though it is less invasive than traditional epi-off cxl.

My son has been given three varieties of eye drops which he is using as directed. None are doing much to reduce the pain. I don't know if it is routine, but he did not receive a prescription for pain medications. Ibuprofen alone has not given adequate relief. He was able to obtain some usual post-surgery meds which have helped. Currently he is sleeping and has been asleep for the last few hours. Hopefully when he awakens the worst will be over, or at least almost over.

Emily


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Date: Sat Jun 9 10:29 AM, 2012
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He awoke from a five hour nap feeling much better. We chatted, then went out for a casual dinner. I had the first hamburger I have eaten in two years. It was good. About an hour after dinner some pain returned, not as severe as before. Looks like he will take another dose of meds tonight. From now on I am going to call my son Dan. (not his real name). As I seek support from all of you I feel it is appropriate to respect his privacy.

One of the technicians we dealt with during the cxl procedure described the day after as something like having a bad sunburn in your eye. That sounds like a good description to me. Yet, I gather that many have an easier time on the first days after this treatment than Dan has.

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