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RCE here. Epithelial Debridement surgery Aug. 1. Scared & worried. Please read & help

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  • RCE here. Epithelial Debridement surgery Aug. 1. Scared & worried. Please read & help

    I am new to posting on these forums. I have read Dry Eye Talk when searching for answers to Recurrent Cornea Erosion (RCE).

    My RCE started in April, 2016. Not too long ago. I didn't have any blunt trauma to my eye.. nothing ever hit it, etc. My RCE started spontaneously My doctor seems to think it's something genetic. Though perhaps it may have been perpetuated by dry air from air conditioners and heaters at night.

    It started in April, 2016 with that "foreign body sensation" about 3 - 4 times per week. That quickly turned into a lot of pain + foreign body sensation about 2 times per week first thing when I woke up and for about 1 hour after waking up. I kind of ignored it for a few weeks thinking that I just had dust or sleep in my eye.

    I saw a doctor in June, 2016 after a relatively bad (4 out of 10) RCE occurrence. I didn't know it was RCE yet, and the doctor never suggested RCE. The doctor just said I have a dry eye and prescribed a topical antibiotic and basic lubricating eye drops.

    Fast forward to August, 2016. I had a SERIOUS RCE occurrence I woke up in so much pain (I'd say a 9 out of 10 on the pain scale). I couldn't really open my eye, but when I was able to slightly open my eye, I could see the mirror it was completely red with non-stop tears. This lasted for 5 - 6 days. Intense pain. Even when I tried moving my other eye.. I still felt 9 out of 10 pain in my left eye. This is when I saw a doctor and was formally diagnosed with RCE.

    This is important.. The doctor wanted to put a contact bandage on my left eye for it to heal. But he tried and struggled for an hour and gave up. My eyes are too sensitive. They always have been since I was a child. My uncle growing up was an ophthalmologist He tried on several occasions to fit my eyes with contact lens, always failed. I believe it is 70% being sensitive to the physical sensation of anything touching my eye.. and 30% mentally being sensitive to anything touching my eye. I have trouble even doing a basic eye test and for anyone else to touch my eye has always been virtually impossible.

    Fast forward to January, 2017.. I thought my RCE was cured by months of eye drops.. Thera Tears.. antiobiotic ointments, Muro 128, etc.. every single day. But it was not cured AT ALL. I had another horrible RCE occurrence only in my left eye like before. Woke up blinded.. couldn't open my eyes for 4 days.. 9 out of 10 on the pain scale. All I could do was sleep. A different eye doctor again patched my eye (but not contact lens bandage). I have also been on 50 - 100 MG daily of Doxycycline orally for the last 8 months or so for RCE. That's a long time to be taking antibiotics.

    From January to April.. I had about 2 - 3 minor RCE occurrences per month, lasting for 1 - 2 days. Then in May, 2017, I had another major occurrence again.. lasting 4 - 5 days.

    I went back to my ophthalmologist in the U.S, and he said we will do the Epithelial Debridement and Bowman's layer polishing. That surgery is scheduled for August 1. He says there is an "80% chance" of this solving my problem. What do you guys think? We're supposed to do some kind of general anesthesia for this procedure because the doctor / surgeon realizes how sensitive I seem to be.

    However, with only 10 days to go.. I still can't imagine even under anesthesia . how the doctor will be able to keep my eye open while scraping my cornea off with a metal tool. Don't get me wrong.. I am very scared. I am 36 years old, and this will be the first surgery I have ever needed to do, let alone.. for my super sensitive eyes!

    How will the doctor (even with me under some kind of anesthesia) be able to keep my eye open.. scrap off the cornea with a metal tool, etc. When I am unable to even have a contact lens inserted in my eye? I mean, I try to imagine how the surgery will go down. But I am having trouble imagining how it will be physically possible, considering my eyes have always been too sensitive to even insert a contact lens or even putting eye drops in were impossible my whole life up until only a year ago.

    Can anyone who has sensitive eyes or was very scared about this procedure fill me in on any tips or advice on how to get through it? Are there any questions that I should ask the surgeon before we actually do it? I feel totally unprepared and very scared. Yet the RCE does come back in a serious way about every 6 months. It's so random, and there's no rhyme or reason to when an occurrence occurs. It's really ruined and changed my life entirely, but yet this surgical procedure also sounds terrifying and there's still a chance it may not even help. I know surgery is a part of life, but frankly I am very very nervous and don't know how to get through it. The doctor also isn't the friendliest person to talk to, yet he's my only option with the insurance I have, he's more the serious type and sometimes seems bothered by a few of my questions I've already asked.

    My Dad's doctor recommended that I try Prokera instead of doing the Epithelial Debridement. But my doctor did not agree to try that with me. :/

    Also, assuming I can make it through the surgery.. I'm worried about recovery. I asked if I could stay in the hospital for 1 - 2 days after the Epithelial Debridement, but they said no. For this procedure there would be no option to stay in the hospital. But I imagine that I will be in a ton of pain afterward as well as unable to open my eyes. I might even be a risk to myself.

    I am sorry this post is so long. I am just scared and worried and seeking any advice into having this surgery done, what to expect, and how to get through it. Thanks for your help.