ICE Syndrome w/Bullous Keratophy

Posted by LisaW @elizabethwall, 5 days ago

New here. I am a female and have ICE Syndrome in my left eye. Have had it since I have been in my 30's and I'm in my early 60's now. Up until almost 2 years now I had no issues since my secondary glaucoma was under control. However, I started getting blisters on my eye that were quite painful and would cause my eye to water continueously for a day, causing sensitivity to light. I had no clue what the problem was until about a year ago, when my symptoms started from months in between to weeks in between and now we are at a week in between with the bouts lasting anywhere from 1-3 days. There is no rhyme or reason on how long they will last but going every 4-5 days before it starts again is wearing me out. About a year ago my doctor told me what was happening, after I showed for an appointment with a bout and he was able to see three blisters. These bouts are very very painful, it's hard to describe just how painful they are, and I still work as an investigator so I have to be able to travel and work directly with people. I am not able to now as much and not sure how long this can go on. Does anyone else have this issue and please tell me what you have done to keep this from occurring so often. I use the salt drops/ointment and have even tried using a small fan across my eye in the mornings to try to keep the liquid flowing since the blisters are from fluid buildup. My doctor just gave me a referral for a higher level of care at the UF Eye Center but darn I can't get in until Jan 2027!!! He requested me to get in at longest 3 months. I am trying to get an appointment now at Mayo as they are supposed to be the best medical care around, even though this will mean a 2 1/2 hour drive. Never thought I would be this desperate but this is affecting my quality of life and job. Any recommedations would be greatly appreciated until I can get in to see the specialist. I have looked around for programs that study both of these issues but nothing. I guess it is rare enough there isn't a lot of oversight on it. I'm sorry for the long explaination but I hope someone can help. Thank you.

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Sorry this should have read Bullous Keratopathy in the heading but can't see a way to edit it.

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