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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.

  • #2
    Originally posted by RCEsuffering View Post
    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. :/
    Unfortunately Prokera (amniotic membrane) comes in the form of a contact lens and you mention difficulty tolerating contact lenses. The makers of Prokera, Tissue Tech, are developing amniotic membrane eye drops though, however I hear their tentative launch date isn't until November 2017 in America.

    https://www.healio.com/ophthalmology...-after-prk-ptk

    I'm not sure where you're based but there are amniotic membrane eye drops already available in Italy and approved by the Department of Health there, HAMT-EU / AMX by Dr. Emiliano Ghinelli. There's also amniotic fluid drops like RegenerEyes, OptiSerum available but don't know how much of the original tissue is retained.

    Alternatively there's autologous serum which also has growth factors for wound healing, these are eye drops made from your own blood. Some places also do platelet-rich-plasma (PRP) autologous serum (Toyos Clinic in America for example). In the UK here they're also experimenting with fingerprick autologous blood.

    http://www.toyosclinic.com/eye-news/...d-new-prp-drop

    http://www.toyosclinic.com/eye-news/...ry-eye-disease

    Long-term follow up of autologous serum treatment for recurrent corneal erosions:
    https://www.ncbi.nlm.nih.gov/pubmed/20456438

    Autologous Platelet-rich Plasma Eye Drops in the Treatment of Recurrent Corneal Erosions:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820519/

    I'm sorry I can't offer input on the debridement procedure but here's a site search for other's experiences to peruse:

    https://www.google.com/search?q=site...al+Debridement
    Last edited by PhoenixEyes; 19-Jul-2017, 20:05.
    Sufferer due to Toxic Epidermal Necrolysis.
    Avatar art by corsariomarcio

    Comment


    • #3
      Originally posted by PhoenixEyes View Post

      Unfortunately Prokera (amniotic membrane) comes in the form of a contact lens and you mention difficulty tolerating contact lenses. The makers of Prokera, Tissue Tech, are developing amniotic membrane eye drops though, however I hear their tentative launch date isn't until November 2017 in America.

      https://www.healio.com/ophthalmology...-after-prk-ptk

      I'm not sure where you're based but there are amniotic membrane eye drops already available in Italy and approved by the Department of Health there, HAMT-EU / AMX by Dr. Emiliano Ghinelli. There's also amniotic fluid drops like RegenerEyes, OptiSerum available but don't know how much of the original tissue is retained.

      Alternatively there's autologous serum which also has growth factors for wound healing, these are eye drops made from your own blood. Some places also do platelet-rich-plasma (PRP) autologous serum (Toyos Clinic in America for example). In the UK here they're also experimenting with fingerprick autologous blood.

      http://www.toyosclinic.com/eye-news/...d-new-prp-drop

      http://www.toyosclinic.com/eye-news/...ry-eye-disease

      Long-term follow up of autologous serum treatment for recurrent corneal erosions:
      https://www.ncbi.nlm.nih.gov/pubmed/20456438

      Autologous Platelet-rich Plasma Eye Drops in the Treatment of Recurrent Corneal Erosions:
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820519/

      I'm sorry I can't offer input on the debridement procedure but here's a site search for other's experiences to peruse:

      https://www.google.com/search?q=site...al+Debridement
      I'm based in Portland, Oregon, USA. My partner and daughter are based in the Philippines, so I end up visiting the Philippines.

      My health insurance only covers me in the U.S. The things that insurance covers is quite limited. Like the surgery I have scheduled - Superficial Keratectomy (Epithelial Debridement) and Bowman Layer polishing - is covered by insurance.

      Last year I asked my opthalmologist in the U.S about the serum made from your own blood, but it's not covered by insurance. Their office said it costs something like $500 for a 30 day supply.

      One thing I've read over the last few days on Dry Eye Talk and other sites is that an amniotic membrane drop should be used after Superficial Keratectomy surgery? Not sure if anyone can confirm this. I have gathered from my reading online that the healing of the epithelial is so crucial with regards to doing a procedure like Superficial Keratectomy?

      My big concern (besides recovery) is how to tolerate the actual procedure. When I watch videos on YouTube of epithelial debridement.. I honestly get freaked out of my mind in a bad way. :'( I can't imagine how the doctor is gonna scrape the front of my eye with a metal tool. Unless I'm completely knocked out and not awake from general anesthesia. Frankly, I need to ask them what kind of anesthesia they would use. I honestly don't know how most people manage these surgeries. I find it almost impossible to touch my eye with my finger.. let alone someone else putting a metal object directly on my eye and scraping it.

      I have been through hell with RCE.. with all the painful mornings.. and days and days of recovery every few weeks and every month. Though with a 60 - 80% success rate, and a 20 - 40% chance of failure or no change, I wonder is it really worth it?

      Comment


      • #4
        You might want to ask in advance if they can give you something to calm your nerves right before the surgery. I had two surgeries (not eye related) where the first time I was completely knocked out, then the second time I had the same surgery they decided I should be awake. Panic set in, but they gave me something in my IV that made me very calm and alert and able to do what the doctor asked me to do during the procedure.

        Your RCE sounds pretty bad, but have you tried wearing night time shields like Eyeseals 4.0 while sleeping, and airshields/goggles like 7Eye or WileyX during the day including indoors? Someone recently posted he was able to eliminate his RCE using these protective gears, combined with a few drops of preservative-free saline as needed during the day and lacrilube at night. Also it may also help using thicker longer lasting eye drops and gels like Systane Ultra or Genteal Gel at night and day while wearing the protective gear, it depends what works for you. This site's Dry Eye Shop sells several night and day shields and the Genteal, and many other products...you may want to call them and let them know what you're dealing with, to see what they might recommend.

        https://www.dryeyeshop.com/mobile/storefront.aspx
        Last edited by Hokucat; 21-Jul-2017, 14:49.

        Comment


        • #5
          Originally posted by RCEsuffering View Post
          I'm based in Portland, Oregon, USA. Last year I asked my opthalmologist in the U.S about the serum made from your own blood, but it's not covered by insurance. Their office said it costs something like $500 for a 30 day supply.
          That sounds very expensive compared to other prices I've heard quoted from the US on the forums here (e.g. $200 for 3 months, about 50ml). It costs about $500 a month in the UK but that's mostly due to all the red tape regulations here bumping the cost up. Maybe worth asking around more. Also a few seem to mention their insurance covered it so worth asking just in-case, many may not but never know.

          http://www.dryeyezone.com/talk/forum...rum-drops-cost

          One thing I've read over the last few days on Dry Eye Talk and other sites is that an amniotic membrane drop should be used after Superficial Keratectomy surgery? Not sure if anyone can confirm this. I have gathered from my reading online that the healing of the epithelial is so crucial with regards to doing a procedure like Superficial Keratectomy?
          Are you sure they meant an amniotic membrane drop and not an amniotic membrane surgical graft or an amniotic membrane contact lens? Since you can't tolerate contact lenses I'd ask about whether they can do an amniotic membrane transplant graft during the time that you're knocked out for surgery.

          As far as eye drops go, other than the Italian HAMT-EU drops (and hopefully in the future Regenesol more globally) where they morselize the human tissue into tiny particles for use in eye drops, I don't think the others (RegenerEyes, Genesis, OptiSerum) are considered a human tissue transplant anymore but an amniotic fluid extract. They retain some of the anti-inflammatory and growth factor healing properties but without the other elements of the membrane retained I think more study needs to be done on how they compare to autologous serum which may contain similar factors. Especially as amniotic fluid can be more expensive than autologous serum and similarly might not be covered by insurance. Another member here got quoted $200 for 3 ml of RegenerEyes amniotic fluid compared to $18.50 for 5ml of autologous serum someone got quoted from Leiter's compounding pharmacy.

          http://www.dryeyezone.com/talk/forum...357#post137357

          RegenerEyes patent description:
          "The formulation is a sterile de-cellularized human amniotic fluid (D-HAF), devoid of amniotic stem cells and elements of micronized membrane or chorion particles."
          https://www.google.com/patents/WO2017062948A1?cl=en

          "Serum had superior growth supporting and migration effects on corneal epithelial cells than human amniotic fluid HAF."
          http://iovs.arvojournals.org/article...icleid=2377788
          Last edited by PhoenixEyes; 22-Jul-2017, 04:01.
          Sufferer due to Toxic Epidermal Necrolysis.
          Avatar art by corsariomarcio

          Comment


          • #6
            This is an old thread, but I need to append this information for anyone reading it:

            Regener-Eyes is not an FDA approved drug. It is being marketed deceptively as though it were in compliance with regulatory requirements. As a biologic drug, this is even more of a concern. Please see more information at biologiceyedrops.org
            Rebecca Petris
            The Dry Eye Foundation
            dryeyefoundation.org
            800-484-0244

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