Discussions By Condition: Eye conditions

ICE Syndrome

Posted In: Eye conditions 138 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?

Reply Flag this Discussion
  • Gunrunner,Thanks for the scoop on the tribec. Yes, my understanding is that the its sole purpose really, is to find some other way for the built-up fluid to exit. No exit... pressure builds, damages the optic nerve and you loose your vision. I've already lost some peripheral vision... straight on is still very good. My understanding from the first doctor I saw, is that the vision that I've lost is permanent... can't get it back. He then referred me to the Dr. I'm seeing now... who will do the tribec if necessary. I've been quoted a recovery time from the tribec as about 6 weeks. When you say that I may be discouraged... is it because I may expect better vision? Or is it because of something else... like the eye being disfigured somewhat? It would be good for me to get a little clearer on this. Also, I am finding out that one of the risks is a heightened chance of cataracts developing in the ICE eye. Sounds like that's what happened in your case. I think you said it a while back... it's a bear... no doubt about it! Are you expected to have better-than-ever vision as a result of your corneal transplant? What's the prognosis on that? Well, enough questions for today! But you know I appreciate your answers and dialogue whenever you can get to it. All my best wishes for your continued healing... smoothly and quickly.Taosblue;)
    taosblue 9 Replies
    • January 26, 2008
    • 03:39 PM
    • 0
    Flag this Response
  • G'day, I'm Paul from Australia and have had ICE for ten years (I'm 60). This is my first comment on this site. Because of our national health scheme, I've had first class treatment: a 'Malteno' shunt in the eye to drain off pressure, Betagan and Alphagan eyedrops for the pressure (all working), a corneal transplant (waiting for the second after a six-year life span of the first) and an artificial lens to treat the cataracts. The creeping glaucoma alerted me to my right-eye's problem when I nearly hit a car coming from my right (we gotta give way to our right down here). I'm used to my monocular vision and as a practising artist continue to draw and paint without difficulty. I first heard the name "Ice" when an intern came over for a sticky-beak. Thanks be for the Internet! Thanks to all for your comments, particularly pain management, as that is my main concern. I attend The Eye Institute, Chatswood, Sydney (61 2) 9424 9999, and receive excellent care. I use sunglasses year round and never drive at night. Wish I could contribute something useful but after my next op I'll post an update.Thanks again.
    Ozpaul 1 Replies Flag this Response
  • Dear ICE patients,I have read through all the current entries concerning ICE. All sound very familiar. I was diagnosed in '98, I'm now 58, with various surgeries ensuing. I have two Ahmed valves, cataracts removed, and most recently, June 3rd, I had a DSEAK procedure. The hours after surgery were the most pain I have ever endured. I wonder if anyone else has had this surgery, in combination with the ICE? Can you describe your experience?Some people mentioned that they were worried because they weren't correctly diagnosed early in the stages of their disease. Personal experience tells me that it makes no difference how early you were diagnosed- the road is the same. I have to say that my main concern now is the pain. I am used to not seeing out of my left eye. Sunlight kills! Any suggestions on good pain medication? I now take Percoset and it is fairly successful.I am glad to be a member of this forum since it gets pretty lonely not knowing anyone personally who had this condition. My husband can only listen so long, haha. Sincerely,Nancy
    nparis 1 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.