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ICE Syndrome w/Bullous Keratophy
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.
Hi Lisa
I also have ICE in my left eye and was diagnosed about 8 years ago. I don’t have the blisters but back in February of this year I lost a lot of vision in that eye and the pressures went up to 44. (Thank you shingles). In April I had a stint put in and it was doing fine until a couple weeks ago. Pressures have been up again but I’ve been on 3 different drops since and it has stabilized. I meet with a cornea transplant specialist next week for next steps. I go to unc chapel hill for this. Now while I don’t have the blisters I do understand the frustration with the condition. I am a medical laboratory scientist and I need my eyes. I wasn’t expecting this at age 40- a possibility of having to find a new career. While I can’t offer advise on the blisters, I can offer support. If you ever need to vent or cry or anything I am here. Just know reading your post has made me feel less alone. Thank you.
Tak
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1 ReactionHi Tak,
How wonderful to hear from you, and thank you so, so much for taking the time to respond to my message. It truly means more than you know. With ICE being so rare, it can make you feel very alone and out of place, especially when so few people have even heard of it. I’m so grateful to have connected with someone who actually understands what this journey is like.
I’m so sorry you’ve had so many problems with your eyes after only 8 years with ICE. I’ve been dealing with it for about 30 years, but it really wasn’t until the past two years that I began having significant problems, starting with losing the peripheral vision in my left eye. I’ve been fortunate that Timolol has kept my pressure around 20 for many years, although lately I feel like it may be creeping higher.
I was shocked at how quickly you began having pressure problems again after your stent. I’ve always understood that, unfortunately, procedures can eventually fail because those abnormal ICE cells continue producing.
It really is disappointing that there doesn’t seem to be more interest in research or even a study specifically for people like us. We may be too far along in our journeys to benefit personally, but I would gladly be a guinea pig if it could help someone newly diagnosed avoid some of what we’re dealing with now.
I sincerely hope you won’t have to give up your career and that whatever treatment you receive works for you. It’s heartbreaking when this disease begins taking away your livelihood. I’m 62 and, although I’m getting closer to the end of my career, I’m not ready to give it up either. I’ve been an investigator my entire career, first in law enforcement and later in the corporate world, so it’s a huge part of who I am, it's really all I am.
I’m thankful you haven’t experienced the blisters. Considering how high your pressures have been, I’m actually surprised and very relieved for you. When mine rupture, the pain is almost impossible to describe. I’m not a complainer, but those episodes are truly awful.
Ironically, when I was first diagnosed, I used to wish ICE was in both eyes because the one pupil was distorted, causing black throughout my colored area, and the other being normal was just too weird. Sadly the eyes used to be my best feature! 😂 Now I wear blue contacts for cosmetic reasons, and have had to order from abroad contacts with smaller pupils just to make the pupil area look more consistent. Seems like there’s always something with this disease!
Anyway, I’m rambling, but it honestly feels so good to talk to someone who understands what I’m going through and what may be ahead. I am truly grateful you reached out.
I wish you the very best, and please let me know how things work out for you, as I plan on staying on this site and monitoring it, since there are very few like us. I’m going to try to avoid surgery for as long as I possibly can, but I won’t know much more until I see the UF Eye Center. Unfortunately, January 2027 is the earliest appointment I could get.
Thank you again for responding. It really meant a lot to me to know I’m not alone in this.