Discussions By Condition: Eye conditions

ICE Syndrome

Posted In: Eye conditions 136 Replies
  • Posted By: Anonymous
  • October 12, 2006
  • 10:10 PM

I have just been diagnosed with ICE syndrome, for 3 years I have been constantly going to a special Eye Hospital as diagnosed with glaucoma (left eye only), after 8 mths I told them I was getting patches of blurred vision like a curtain being pulled infront of my eye. They changed my drops frequently,and had know idea what was causing problem. And felt glaucoma had probably been caused by a accident over 25 yrs ago. Vision progressivley got worse headaches started, pain in eye. Now over 3 years later finally have a diagnosis because ended up in Emergency Dept of local hospital with dizzyiness along with other symptons. Finally a young doctor examined me told me right away he didnt feel this could have anything to do with accident that many yrs prior. So he started to look for other cause and came up with ICE. Several head doctors since in last 10 days and we have an offical diagnosis. My question is if this had been found 3 yrs ago could they potentially have treated and saved my eye sight at the level it was at then?

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  • lanne, i noticed that you post a blog at almost a year ago and never received a reply. that is about how my research has gone. i don't know if you have learned any thing more about ICE, but i too was diagnosed about a year and a half ago after about 7 years of a missed diagnosis. i was first diagnosed with addies pupil and was told it was no big deal and would not change. this was from a very reputable eye doctor who owned a big clinic. so although i disagreed with the fact that there would not be any change ( i had already noticed them) i did nothing and thought it was all in my head and i would just have to figure ways to get around. night driving was becoming a bigger isues than i would have liked it to be. i went for a new exam for glasses about 4 or 5 years later at a local walmart ( i had heard he was pretty good) and he was the one that told me i was missed diagnosed and that he thought i had ice. he sent me to a glaucoma specialist and the diagnosis was confirmed again. i at least thought that that ther was hope 2 eye doctors had agreed on one diagnosis. i was told it could turn into glaucoma and that it was rare, which was why the first very reputable eye dr. missed it. a year later i was diagnoed with a hole in my pupil and 2 months after that - glaucoma. i am only in my early 40's. the light issue has gotton worse with the rainbow halos and the lightning bolt streaks. and now the florecent lights inside bother me and watching tv. any glare at all. the only thing i can figure out is that it is progressive and they can only treat some of the symptoms as they occur(like glaucoma) they can't stop them. the curtain like blurry vision as just started for me but i just noticed it when i started using the glaucoma drops i am on my second drops the other one worked on the pressure but made my eye very red and the one i am on now strings a little but i tell myself that it is better than going blind. i am now going to a third doctor and he also confirmed the diagnosis ( i had to change because of insurance) any how i hope you get this and it helps. i have never heard of anyone else to have this. and the doctor from walmart was a little too excited that he had found such a rare case. you know how doctors can be.
    wilson1 7 Replies
    • August 20, 2007
    • 04:22 PM
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  • I read your post about ICE syndrome. I was diagnosed with ICE syndrome back in either 1998 or 1999. This ICE journey has cost us a lot of money. We have no insurance. I have had two trabs and am currently on 4 different drops. My eye keeps getting worse. I am almost blind in that eye now. From all the doctoring I have had(I have had alot!) I have learned that there is not a whole lot you can do about ICE. It has been a very discouraging journey for me. I am very thankful that it is only in the one eye.
    Anonymous 42,789 Replies
    • September 22, 2007
    • 02:28 PM
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  • If You Don't Mind Me Asking . How Long Did It Take For You To Start To Go Blind? Also Is Your Blindness Caused By The Glaucoma? I Am Very Fortunate In That I Still Have Decent Vision My Worst Problem Is The Light I Wear Sunglasses All The Time Even Inside. Also Did You Have A Injury To Your Eye? They Say They Don't Know What Causes It But So Far The 3 People I Have Talked To Have Had An Injury When They Were Young. I Did But It Wasn't A Bad One .
    Anonymous 42,789 Replies
    • September 24, 2007
    • 04:43 PM
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  • I was diagnosed with ICE Syndrome in 1999. After thinking I was just dealing with age issues at 45 and possibly needing glasses, I went to my local opthamologist and was shocked to find out that I had glaucoma in my left eye with a pressure near 40. After months of dealing with different drops and diamox medication that made my knees buckle, we decided that laser surgery may help. It was suggested that I get a second opinion which eventually proved to be the sight-saving choice instead of laser. Unfortunately, I delayed my decision to seek a second opinion for several months and was not aware that my eye was suffering more damage from the continuing glaucoma as I delayed further. The medications, Timoptic and others, were having minimal or no effect on relieving the pressure. Going to the Johns Hopkins Wilmer Eye Institute for a second opinion, as recommended by my local opthamologist, was the best decision I could have made, though my delay cause me to loose a good percentage of sight, mainly toward the inside portion of my visual field. After trabeculectomy surgery and a few uncomfortable tweaks during follow-ups afterward, my eye has been fairly stable for 6 years or more. Of course the sight, as of now, will not return but I am happy with the results so far. Depth perception is an issue but I do not expect to be catching baseballs too often. Hopefully the research being done will prove successful in future years. I highly recommend Dr. Harry Quigley at Wilmer Eye who has been so good to me since my first appointment. I just returned from my follow-up which now only needs to be on a yearly basis and things are stable. It was interesting to look at the digital photos they took of the back of my eye and see the damage to my optic nerve area. I have grown to appreciate the gift of sight since I have gone through all of this. I wish everyone well who is diagnosed with ICE. Please support stem cell research, no matter what type of method is being used! Cheers.
    Anonymous 42,789 Replies
    • September 30, 2007
    • 05:02 AM
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  • My husband has been battling ICE syndrome for about 8 years - it was diagnosed rather quickly by a local ophthalmologist when he noticed his pupil to be distorted - suspected a previous injury - but he had none. Things have gone down hill since - my husband has lost his sight - now lives in terrible pain as the cornea is no longer "staying attached" - a corneal specialist in Pittsburgh says she can do nothing further and wants a 2nd opinion - they want to do a membraneous embryonic corneal transplant - but I am not very hopeful - feel it is a waste of a lot of money - the final alternative is to remove the eye to get rid of the pain- but no one is acting on this yet - my husband is fearful that the pain will not go away with removing the eye and worried about his good eye - but - to live in such pain daily has kept him from enjoying his life for 6 months so far
    Anonymous 42,789 Replies
    • November 9, 2007
    • 00:19 AM
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  • I just stumbled onto this forum. I have had ICE for about 12 years now in my left eye. It was diagnosed at a very early stage during a routine flight physical. I have had specialized care since. My initial difficulties were light sensitivity and resulting headaches. That was corrected with pink number 2 glasses (prescription has changed over the years). From there intraocular pressure increases that were controlled with medication for about 5 years. Finally a tribec filter operation had to be done. I have been holding my own with intraocular pressure since (bounces between 9 and 15). I visit my ophthalmologist every 3 months and have a field test every year. Two years ago I had to have cataract surgery. Around the end of September of 2007 I began to notice a significant loss in visual acuity in the ICE eye. I was checked in Nov and Dec and sent to a cornea specialist in Dec. We are in the process of setting up a cornea transplant now. I am on sodium chloride drops to help dry the cornea some and have just read where using a blow dryer in the morning is helpful as well. I am interested in causes and have read a number of articles that this is now believed to be caused by herpes simplex virus. But someone posted here that they had had an injury. I had a slight injury about 8 years prior to this being discovered. Are there similar histories? Thank you.
    Gunrunner 31 Replies
    • January 2, 2008
    • 04:15 PM
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  • I just stumbled onto this forum. I have had ICE for about 12 years now in my left eye. It was diagnosed at a very early stage during a routine flight physical. I have had specialized care since. My initial difficulties were light sensitivity and resulting headaches. That was corrected with pink number 2 glasses (prescription has changed over the years). From there intraocular pressure increases that were controlled with medication for about 5 years. Finally a tribec filter operation had to be done. I have been holding my own with intraocular pressure since (bounces between 9 and 15). I visit my ophthalmologist every 3 months and have a field test every year. Two years ago I had to have cataract surgery. Around the end of September of 2007 I began to notice a significant loss in visual acuity in the ICE eye. I was checked in Nov and Dec and sent to a cornea specialist in Dec. We are in the process of setting up a cornea transplant now. I am on sodium chloride drops to help dry the cornea some and have just read where using a blow dryer in the morning is helpful as well. I am interested in causes and have read a number of articles that this is now believed to be caused by herpes simplex virus. But someone posted here that they had had an injury. I had a slight injury about 8 years prior to this being discovered. Are there similar histories? Thank you. i had 2 small injuries within 6 months of each other. they were both like a scarpe/bruise type of injuries. they are hard to explain. i received them at work. but neither was bad enough that i went to the doctor. i am curious on the herpes simplex virus. since i was a kid i would get fevor blisters bad. one point because of a severe sunburn they covered my whole mouth. and the glaucoma specialist that i went to told me that was a new working theory. but on the injury it may have just been just coincidence but the distorted pupil showed up within the same year as the injuries occcured. but i was misdiagnosed. i hope this helps and good luck with your transplant, i have been lucky in that i am just now starting to get the migraines. but besides the light issues i have had no other problems. although i am amazed this year how bad the snowblindness can get. goodluck again
    wilson1 7 Replies
    • January 3, 2008
    • 06:04 PM
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  • Wilson1,Thanks. Sounds like there might be something to trauma in this somewhere.Gunrunner
    Gunrunner 31 Replies
    • January 3, 2008
    • 10:46 PM
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  • Although I wish we all wouldn't have it, it is good to find others who have the same rare condition here. I have been diagnosed with ICE, precisely with the Chandlers syndrome, on one eye 4 years ago, at the age of 35. I had to undergo surgery two years ago because all the different drops didn't work anymore to keep the pressure down. The surgery was Viscocanalostomy. It did it's job for about one and a half years and then the endothelial cells started to block the drainage again. Now I am on 3 drops again with the pressure going up slowly. I am scared now and try to investigate what the next step should be. I guess another surgery could help again for a while, but there are only that many surgeries you can do on one eye. If there is anybody who has experiences with this process, please let us know.
    findingout 3 Replies
    • January 7, 2008
    • 07:13 AM
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  • Findingout,Yes it is a bear that stays with you. It can be rather controling of your life. However, the alternatives are to loose that eye. Next week I go in for my 3rd operation, a cornea transplant. Not looking forward to it at all. I had the trbec filter operation several years ago and it is working fine. Could be an alternative for you. I have been to a number of places for treatment and I guess that I was lucky that it was noticed and diagnosed at a very early stage. I have made a decision that this is the last one though. I am simply tired of it. If I go blind in the eye then so be it.Good luck.
    Gunrunner 31 Replies
    • January 7, 2008
    • 11:28 AM
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  • Gunrunner,thanks for sharing and Good Luck with your surgery.
    findingout 3 Replies
    • January 7, 2008
    • 10:01 PM
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  • Another question I have is if anyone knows of a doctor, who is specialized in the ICE syndrome. It would be interesting to contact that doctor if there is one out there. Any leads would be very appreciated.
    findingout 3 Replies
    • January 7, 2008
    • 10:10 PM
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  • findingout,University of Missouri Medical Center, Mason Eye Clinic, Dr. Dana Schoenlieber. About as knowledgable as anyone on the subject. I think between Mizzu and the VA Hospital in Birmingham I have had every resident there get to poke and play with my eye. But the care from Mizzu and Dr. Schoenlieber has been excellant. BTW, I was confirmed diagnosis at the National Naval Medical Center in Bethesda, MD. The Navy doc that made the diagnosis was a resident at the University of Alabama, Birmingham (UAB) and a student of the VA doc that was initially working on me when I lived in AL.Gunrunner
    Gunrunner 31 Replies
    • January 7, 2008
    • 10:24 PM
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  • Wilson1,Thanks. Sounds like there might be something to trauma in this somewhere.GunrunnerGunrunner... I've just come back from my opthamologist and have hit another level on the Richter scale with ICE. I wanted to let you know that in my case, without any shadow of a doubt... this is a result of herpes simplex virus. Over 30 years ago... I was scratched by a cat on the left side of my neck. It developed into a blister and was diagnosed as herpes simplex. The cat was carrying it. It healed and "went away". About 10 years later, I was diagnosed with herpes simplex in the cornea of my eye. It took 2 years to treat it (cortisone drops) and all seemed well. Another 10 years later... I was diagnosed with ICE... very, beginning stages. It was at this time, that I became aware of its rarity and its connection to the herpes virus. Herpes simplex, even if inactive... lies dormant... but never leaves the body and can migrate. Over years of time... it migrated up to my left eye from the spot on the left side of my neck and the rest took it's course over a greater deal of time. I have a surgery consulation set up this week... as eye drops are no longer effective in keeping the eye pressure down. I am very appreciative of the stories regarding surgeries to treat this that are included here and would love to know any more from anyone who has gone through surgeries that the feel helped them and were effective.
    Anonymous 42,789 Replies
    • January 22, 2008
    • 02:14 AM
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  • Taosblue,I'll know more tomorrow as I will be under the knife for a cornea transplant. They will do a biopsey. I was originally scheduled for last week but had an interesting thing appear from the pre-op, I am diabetic and had no clue. Getting under control but we are faced with the issue of time to do a cornea transplant now.Anyone had a history of diabtes?
    Gunrunner 31 Replies
    • January 22, 2008
    • 10:14 PM
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  • Thanks Gunrunner... I sure appreciate any and all info you can share with me on your cornea transplant surgery. One more day... and I get to speak to a surgeon myself. The thing that I seem to be getting from reading people's stories and web info out there, is that not only is this thing progressive, (progressive eye death) but that the medics don't have much of a clue about it, so the treatment is symptomatic... treat it as symptoms reveal themselves... sort of a behind the "8" ball approach, as opposed to ahead of the "8" ball. So as a result, many folks have had multiple surgeries. A good deal of them are glaucoma "relieve the pressure" type and then, if that doesn't work.. another glaucoma 'relieve the pressure" type of surgery and if that doesn't work... corneal transplant. I wonder if the thing to do is just to go straight for the corneal transplant! One couple here, who had no insurance, was contemplating cutting the eye out altogether! No wonder. All my best wishes for your successful surgery and recovery. Looking forward to your continuing story.;)
    taosblue 9 Replies
    • January 23, 2008
    • 01:19 AM
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  • Taosblue,Went fine back home recouping. We'll see if we too have herpes simplix.Thanks and good luck.Gunrunner
    Gunrunner 31 Replies
    • January 24, 2008
    • 11:25 PM
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  • Gunrunner...Really glad to hear that all went well and that you're home recouping. How long was the surgery and how long is the estimated recoup time? Hopefully, not too long before you're feeling well, with a happy eye. Let me know how the recoup is going as you move forward with this. Pain/pain pills/no pain?... Better sight?... how long before you remove your black patch? I met with my surgeon today and we're not rushing into surgery right away. I'll be trying a new set of drops to double check that I didn't just become "immune" to the effects of the other ones after a year. All of a sudden, the usual drops aren't working and pressure is building. Of course, this may just be the ICE cells taking over... but we'll check the new drops out for about 5 weeks or so... and then make a decision regarding surgery if the new drops don't make a difference. One step at a time. Looking foward to hearing how it 's going with you. I asked my Dr. if there were any active research centers in the country... working on figuring this thing out. He said he'd double-check, although couldn't come up with any off the bat... but if he does, I'll pass it on.Best,Taosblue ;)
    taosblue 9 Replies
    • January 25, 2008
    • 03:44 AM
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  • Taosblue,I was using 3 different drops 3 times a day at one point too. The problem is that the canal is closed over by scaring from the ICE. That went bad really quick on me and we did a trebecia (stint & filter). First operation, it wasn't painful but my eye looked like crude for about a month. However, vision was quick to return and pressures have been really good ever since. Recoup time was critical 2 weeks solid very limited activity to allow fluid to rebuild in the eye. The second operation was a cataract lens replacement. No pain less than 2 weeks recovery. The third one was the cornea transplant. This was actually a half transplant. Relatively new procedure that has been around for 5 or less years. I was the first with ICE to have this done at MizzU Medical Center. It was recorded and I am hoping to get a copy of it. This is very neat, they cut away the bottom half of both the reciever and donor's cornea. Insert the donor's, hold it up with an air bubble and stich the incisions. Some pain but bearable without any meds. Very blurred vision that should return to normal within 6 weeks or so. Let me rephrase that, normal to me which is blured distance but very good close up. I have become very adjusted to monocular vision over the last 5 years. A full cornea takes up to a year. As with a full there is a chance of rejection. Unlike a full, the most critical time is the first 24 hours where you must lie on your back with the head looking up. Once that is over the recovery is easy. Like all eye surgeries, no bending at the waist, no lifting, no exercise for at least 2 weeks. Some people have reactions to the anthestic drugs after surgery and they throw up. That cause s an issue with the looking straight up and cause the surgery to fail. I did not have that problem. Now waiting to see what the biopsy shows on the removed cornea.
    Gunrunner 31 Replies
    • January 25, 2008
    • 02:13 PM
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  • Gunrunner,Great that you're feeling well enough to type that letter! I really appreciate your sharing the details of "the process" as it has been for you. It's invaluable to me, as I can imagine to anyone else reading, who has been diagnosed with ICE. Please continue to keep me posted and I will do the same. On my end...as a result of my meeting with the surgeon yesterday... we're going to give some new drops a chance for 5 weeks and if they don't help, then probably head into a trabeculectomy. So... we'll see how it goes. I'll keep you posted on my experience with all this... as everyone else who might find this forum. Perhaps in sharing our experiences and information... we can all be of the best help each other.Taosblue ;)
    taosblue 9 Replies
    • January 26, 2008
    • 02:04 AM
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