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Post Info TOPIC: Constant Pain 1 year out from Epi-ON.. What happened?!


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Date: Mon Nov 30 1:40 AM, 2015
Constant Pain 1 year out from Epi-ON.. What happened?!
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I had Epi-On Cross Linking done at Slade and Baker Vision in Houston, TX Dec 2014 on my left eye. 

I was given valium and than ribovalin drops were put in my eyes for an hour by a nurse, the doctor came in to check the absorption and than left the room leaving the procedure in the hands of the nurse. The doctor only came in once more about 5 minutes after starting and asked if things were ok before leaving the room again. After about 10-15 minutes the light and `marker` you are told to look at became extremly blinding and painful to look at. It was like staring into the sun or having a laser pointer shun in your eye.

After 15 minutes i was in unbearable pain and asked how much longer the procedure was left and was told i had another 15 minutes to go. I had my right eye done at another doctors office using the avedro machine with no pain or discomfort. At this point i mentioned i did not think i could continue on for another 15 minutes and asked if anyone else has experienced this much discomfort from the machine, i was told no.

Not long after i noted the intense pain and `blindness` from staring at the marker, and requested to see the doctor as it was clear this lady was not experienced as she did not know you could get Keratoconus from Lasik surgery (which is what i have). I was told he was gone for the day and to hang in there another 15 minutes and my problems will be solved. I was never asked how bad the pain was or what i was experiencing, just to grin and bear it.

Needless to say getting through the procedure was pure hell, and the blinding light really made me want to squint and look away from it. I never had this with the avedro equipment, but this was a different machine.

Not long after recovery started i noticed i was much more sensitive to lights. The procedure seemed to have changed the way my left eye percieves light. Fluorescent lights had a harsh glare at the center, its like looking into a laser pointer. The sun and reflection from it are so harsh, i get intense eye pain even with sun glasses on. Overall everything is x2 as bright and my eye is in CONSTANT pain, even if i remain in a dark room. It is debilitating and pure hell to live with.

I have been to a dozen doctors and specialist and none know what happened to my eye or why im experiencing such high pain and discomfort a year out from the procedure. I personalty beleive it was the bad reaction i had toward the CXL machine and the blinding pain i experienced through the procedure. Looking back I feel as if i did not have proper doctor supervision and was put with a nurse who knew nothing about my condition or how to deal with complications. Her job was to put drops in and get me through the procedure so they can get paid. I was told they were short on staff and that she usually works at the front desk answering phones.

Has anyone heard of anything like this? I am 33 years old and work as a 3d artist infront of the computer and my vision was 20/20 before the procedure. I now am 20/30 with astigmatism started that i did not have prior to the procedure. I did this as more of a prevention intervention.

It was also noted by another doctor 6 months after surgery i had a large 3mm nevus on the back of my retina that was not documented or mentioned during any eye exam prior to surgery, located directly on my optic disc. I was told the UVA from the procedure might of caused this as well as cornea nerve damage from another doctor?

Symptoms include  photophobia like symptoms, soreness, harsh lighting, and extreme blinding pain (similiar to that of the procedure) when looking into lights. The eye feels very weak and gets fatigued easly. I did not have any of these symptoms before surgery.

Any feedback is appreciated, I am at a loss for what happened and the procedure seems to have went terribly wrong. The doctor takes no responsibility and i have to explain to him what happened since he left for the day during my procedure. Extremely upset at the lack of care provided during my treatment at Slade and Baker Vision. For the $2500 USD i paid, you would think i could alt east get a doctor to make sure there are no problems during treatment instead of being blown off and discarded.



-- Edited by ScottP on Monday 30th of November 2015 01:48:21 AM



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-- Edited by ScottP on Monday 30th of November 2015 01:59:03 AM



-- Edited by ScottP on Monday 30th of November 2015 02:43:32 AM

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Date: Mon Nov 30 6:25 AM, 2015
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It would be guess work as to the cause of the pain from afar. However is it when you blink ? or if you have dry eyes ? It is very usual, to say the least.

Its hard also to say, since there are so many newer protocols (such as epi on) being used from when it first got used in Europe. I wonder if its due to having Lasik done on that eye ? as Lasik patients do sometimes, not often, complain of having pain.

I hope it will go away sooner than later, and I hope you will find a professional that can unearth the cause.



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Date: Wed Dec 2 6:17 PM, 2015
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Scott, 

Really sorry to hear about your eye problems. Hard to say from afar but what you are saying about your underlying diagnosis may not add up. Bear in mind that I am not a doctor, just a patient who has had keratoconus for 50 years. 

Keratoconus is a naturally occurring condition. The cause is unknown but it may be genetic. Laser reshaping of the eye can cause issues similar to those cause by keratoconus but you don't get keratoconus from LASIK. 

What can happen is that you may have keratoconus in an early stage that has not been diagnosed. Keratoconus is a contraindication for LASIK. Your LASIK doctor should screen you for keratoconus before doing LASIK and not do LASIK if you have keratoconus. 

It sounds like you had keratoconus that was undetected prior to the LASIK. I don't think cross-linking would have been indicated otherwise. Since cross-linking is still an experimental procedure in the US, I am dismayed that it is being performed by doctors who seem to have such a casual attitude about it. 

At this point, there is a lot going on with your eyes that takes them far out of the realm of routine. You aren't going to get the help you need from the internet or even your average opthamologist. You need to find a corneal specialist who deals with eyes where things have gone wrong. Dr. Yaron Rabinowitz of Beverley Hills, CA would be such a doctor but I realize it is unlikely he would be an appropriate choice for you as I gather you are in Texas. I just give you his name so you can take a look at his credential and practice interests to get an idea of the type of person you are looking for. http://www.laser-prk.com/ 

Best of luck in getting your eye issues resolved.



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Date: Fri Dec 4 4:16 PM, 2015
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Thanks for the replys. After seeing many doctors I finally got some answers from a specialist. The problem seems to be cornea nerve damage caused from a faulty CXL procedure and lack of doctor supervision. I was told the intense pain and blinding reaction I experienced to the uv light machine is believed to have caused a large amount of corneal cell and nerve damage. From speaking with many other CXL surgeons here in my state, the reaction i had toward the light was not normal at all and a red flag something was wrong.

What's worst is the epi on procedure did not halt progression. I was told by cornea specialist to try scleral lenses to help shield the nerves. Praying this helps, the constant pain is destroying my quality of life.



-- Edited by ScottP on Friday 4th of December 2015 09:08:02 PM



-- Edited by ScottP on Friday 4th of December 2015 09:08:37 PM

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Date: Sat Dec 5 8:55 AM, 2015
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Was there hot spots caused from the UV light ? that caused burning ? This was solved by using saline (on the cornea while the UV light was on) to cool down the heating affect on the cornea (if this was happening) and then with the development of a beam profile which did not cause hot spots. These protocols was adopted years ago in Europe. May be the clinic was using an (older) or a prototype machine which did not take in to account that hot spots on the cornea was possible in some patient cases, and how to avoid them. The Dr should have kept in touch with the research and development and the recommendations presentations from congress's.



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Date: Sat Dec 5 2:11 PM, 2015
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The machine was definitely an older model and I found out later was replaced with avedro machine just a month after my procedure. The riboflavin was from a compound pharmacy so no saline. This has since changed as well. I was told the only difference was the time of procedure using the older machine over avedro machine and that the results are all the same. Because it was an off label study they could use, say, and do procedure however they wanted without FDA involvement and took full advantage of that by giving me almost zero doctor supervision while my cornea was being destroyed.

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