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Bullous Keratopathy Pain
Hi everyone. New here. I posted a threat for ICE Syndrome w/Bullous Keratophy (Keratopathy) a few days ago. I am posting again because I really just want to know if anyone else has experienced this and to see if there is there is something more I can do to keep the frequent episodes of these eye blisters popping every 4-5 days from happening so often. I am using Muro 128 Ointment along with my Timolol drops. I also take a small fan in the morning and run it across my face and eye for about 3 minutes as supposedly it is supposed to help the eye to drain the fluid, not sure it works because nothing has changed and the episodes are more frequent now. Once the watering starts I take two advil and two tylenol together and that seems to help somewhat with the pain but it is really so bad it is hard to put into words. Hopefully someone has some suggestions as I am desperate at this point. Hoping to get my eye appointment with the Mayo Clinic in my area. Thanks.
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I think you are a candidate for DMEK. In the meantime you can use sodium chloride drops ,Muro 128, at least 4 time a day to reduce corneal edema. You can buy Muro 128 over the counter with 2% solution. prescription strength is 5%. My endothelia cells were damaged during cataract surgery 10102025. I am a candidate for DMEK. I have experienced prolonged blindness in my right eye caused by corneal edema.
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1 ReactionThat was what my former doctor's last plan of action was, to build it up thick so that as I blink it won't wear down the membrane so quickly. I was told it might buy me a few years of comfort but because of our disorder and how those abnormal cells continue to grow, I would have to get another surgery at some point unless I croak first 😉 Seriously though, that is why I am holding out not having surgery because I know it is only a temporary fix for me.
I presently use the drops and the ointment along with Sustaine Complete eye drops. The Muro really doesn't seem to do a lot for me as I still continue getting episodes every 4 or 5 days now and no matter how much I used them those times where my eye is really hurting is between 1-3 days. Not sure what makes some episodes longer than others. I even tried taking a small fan and running it across my face to get the fluid to move out, didn't work for me but maybe in your situation? Don't blow it directly in your eye just move it back and forth across your eye and supposedly by osmosis (I think it is spelled) the fluid will drain out. I would do it for 2-3 mins at a time.
It's interesting that your cells were damaged during your surgery because I was only aware recently that some people that have that surgery end up with the blisters and I don't wish that on anyone. I only see cloudiness out of my eye and imagine it is because of the edema. I will say that I have no more peripheral vision anymore in my eye and I have to be VERY careful when I walk to make sure I don't trip because I can't see anything clearly. Luckily you don't have ICE or that surgery would be temporary so for you that might be a relief to get the surgery done. My doctor said that it does help with vision, which for me it's not about that anymore it is about these dang blisters hurting so much. Thank you for letting me know and please keep me up on how the surgery goes for you. I am hopeful you will get much relief from it.