Discussions By Condition: Eye conditions

ICE...Essential Iris Atrophy

Posted In: Eye conditions 21 Replies
  • Posted By: pramshur
  • November 23, 2008
  • 02:25 AM

I was dx.with essential iris atrophy 10 years ago..I came here today and was reading a good thread about this and wasnt a registered user,needless to say,I registered but lost the thread. :( My condition is part of the ICE syndrome..Anyone out there familair with this and want to chat about it?
I have lost most of the sight in my left eye now..It started out with a distorted pupil and pinpoint hole in the iris ..I had 2 surgeries to place a stent (drain)for the glaucoma which kept the pressure down but the cornea is clouded and I no longer have an iris or pupil..Only can see light out of that eye..My Dr. says it is unlikely to happen to the other eye and so far so good.

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21 Replies:

  • :) Anyone out there with this condition..? If so can you tell me your story..? Can we find help for our condtion?
    pramshur 18 Replies
    • November 24, 2008
    • 00:59 AM
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  • Just plain old ICE. Yours sounds a lot worse. Hang in there.
    Gunrunner 31 Replies
    • November 24, 2008
    • 00:24 PM
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  • Its been an experience for sure..I am hanging in there for a cure but since this is rare,I dont think there is much research on it..Thank God he gave us 2..:)Still looking for someone with this conditin..My Dr.has one other lady with my dx and she lost her sight to in that eye..Thanks for the reply..
    pramshur 18 Replies
    • November 24, 2008
    • 03:25 PM
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  • Here is the info on this..It is one aprt of the ICE symdrome.. TopIntroduction: Essential iris atrophy Essential iris atrophy: A very rare progressive eye disorder involving pupil abnormalities and degeneration of the iris. It is a slowly developing disorder that usually only affects one eye. More detailed information about the symptoms, causes, and treatments of Essential iris atrophy is available below. TopSymptoms of Essential iris atrophy click here Displaced pupil Distorted pupil Degeneration of the iris Holes in the irisAttachement of parts of iris to cornea
    pramshur 18 Replies
    • November 24, 2008
    • 03:33 PM
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  • Keeping this bumped up,as to see if anyone else has been dx'd with this symdrome of ICE..It is composed of 3 differnt types..Chandlers symdrome,essential iris atrophy an another syndrome,I cant think of right now..:)
    pramshur 18 Replies
    • November 26, 2008
    • 08:32 PM
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  • Iridocorneal Endothelial Syndrome: I know I read this somewhere..This is ice and my condtion is rare to but right now I have got do some more reading..I believe my conditon is in line with these 2 disorders also..When I find it again,I will post it..
    pramshur 18 Replies
    • November 26, 2008
    • 08:42 PM
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  • I found where I read it..Read below.. ICE syndrome is a spectrum of diseases. There are three clinical categories: Chandler's syndrome, Cogan-Reese syndrome, and essential iris atrophy. The unifying abnormality in all three entities is the abnormal, unilateral, hammered silver appearance of the corneal endothelium. Chandler's syndrome presents with only the hammered silver appearance of the corneal endothelium. Cogan-Reese syndrome presents with the corneal findings and pigmented nodules on the iris. Essential iris atrophy presents with the corneal findings and corectopia with developments of stretch and melt holes with disease progression.
    pramshur 18 Replies
    • November 26, 2008
    • 09:52 PM
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  • Just checking in and keeping this thread bumped up...Hoping to hear from other ICE pateints..:)
    pramshur 18 Replies
    • November 28, 2008
    • 11:32 PM
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  • Bumping again in hope to chat with someone who has this condition..:)
    pramshur 18 Replies
    • December 9, 2008
    • 10:58 PM
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  • Bumping up...
    pramshur 18 Replies
    • December 29, 2008
    • 02:57 PM
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  • at the request of PRAMSUR posting my experience in this thread also.... This is my story/history in dealing with ICE... I was diagnosed with the problem at the age of 35. I first noticed a small spot on my IRIS after taking a shot to the side of my head while playing soccer. Upon visiting my GP doctor, she said it was nothing, however, I insisted on being referred to an opthamologist. The opthamologist told me I had ICE Syndrome and that it was a very rare condition, especially in males, as it occurred mainly in females. I was also told that it was not transitory, in that it only affects 1 eye and it was irreversible and I might lose my sight in the eye by the time I was 50yrs old. I was able to stave off any operations for approximately 14 years due to the aggressive use of eye drops ( I've been through them all). At approximately 49yrs of age my pressure in the bad eye spiked at 60 plus and would not come down. At this time the opthalmic surgeon implanted an 'Ahmed Glaucoma Valve' in the upper right quadrant of my eye to relieve the pressure. I did not lose any vision at this time. This valve and eye drops worked well for about 8 years after which time my pressure again started to rise, this time without associated pain and between doctor visits. I was seeing the doctor every 6 months. This pressure rise caused my vision to blur in the bad eye due to damage to the optic nerve. Prior to this, as I mentioned, my vision was good other than light sensitivity and normal vision correction due to age. My doctor then implanted another 'Ahmed Glaucoma Valve', this time in the upper left quadrant of the bad eye. So, to make a long story short, I now have 2 'Ahmed Glaucoma Valves' implanted in my eye and use eye drops in the morning and at night. I also use a soft contact lense to keep my eye from feeling like I have sand in it. With the aforementioned procedures my pressure has managed to stay in the 16 - 21 range other than the 2 pressure spikes. I see my opthalmic surgeon every 3 months which seems to be satisfactory at this time. Although my depth of field and depth perception have been affected I continue to surf 3 - 4 times a week. I wear prescription surf goggles(tinted) and haven't lost a contact lense in a long time. I am currently 60 years old and according to what the opthalmic surgeon has told me, the condition will get worse as this is a very aggressive disease of the eye. Thank goodness it only affects one eye and not both.... If you have any questions of me please feel free to ask. I have had this problem for 25yrs now and had expected to be blind in the bad eye long before I was. I have an excellent opthamologist who has been very good in taking care of the problem. thank you for reading this..
    ib1surfer 6 Replies
    • December 29, 2008
    • 09:34 PM
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  • Thank you surfer for posting your story here also..Have you lost any sight in that eye? I cant see anyhting but brightness in mine..You are very fortunate if you still have sight in that eye..Mine progressed vvery fast,I havent been able to see out of my eye for years now...Keep hoping for new treatment for the disorder but nothing so far..Thanks again.
    pramshur 18 Replies
    • December 29, 2008
    • 11:08 PM
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  • I do not have very good sight in my affected eye. The damage to the optic nerve, which occurred a few years ago, has caused my vision to be limited to shadows at a distance and light. I can also see my fingers at about 12 - 16 inches from my face. My vision is better in that eye under natural or incandescent lighting. However, it is not very good under florescent lighting which the doctor confirms and he has also stated that florescent lighting is not very good for the eyes. I have done a lot of research on this and opted for the Ahmed Glaucoma valves after much discussion with my doctor also. Due to the fact that I am very active he did not recomend the Trabec. His opinion was that it left the eye too exposed to infection as the Trabec flap is just a hole in your eye where the valve is implanted and then covered with donor sclera/skin. I still use antibiotics because the surfing keeps me in the water but have never had an infection. I feel very fortunate that I have an informed and caring opthalmic surgeon. This guy is the best, in my opinion. Anyway, short of a total eye replacement we've no hope for a cure. I say that as there is currently no real research into stem cell research for this problem and the optic nerve is comprised of approximately 1 million fibers. Once damaged it's pretty much a goner...... We just have to take care of it and keep the pressure down and hope something will eventually come along.... http://forums.wrongdiagnosis.com/images/icons/icon6.gif
    ib1surfer 6 Replies
    • December 30, 2008
    • 02:21 AM
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  • I do not have very good sight in my affected eye. The damage to the optic nerve, which occurred a few years ago, has caused my vision to be limited to shadows at a distance and light. I can also see my fingers at about 12 - 16 inches from my face. My vision is better in that eye under natural or incandescent lighting. However, it is not very good under florescent lighting which the doctor confirms and he has also stated that florescent lighting is not very good for the eyes. I have done a lot of research on this and opted for the Ahmed Glaucoma valves after much discussion with my doctor also. Due to the fact that I am very active he did not recomend the Trabec. His opinion was that it left the eye too exposed to infection as the Trabec flap is just a hole in your eye where the valve is implanted and then covered with donor sclera/skin. I still use antibiotics because the surfing keeps me in the water but have never had an infection. I feel very fortunate that I have an informed and caring opthalmic surgeon. This guy is the best, in my opinion. Anyway, short of a total eye replacement we've no hope for a cure. I say that as there is currently no real research into stem cell research for this problem and the optic nerve is comprised of approximately 1 million fibers. Once damaged it's pretty much a goner...... We just have to take care of it and keep the pressure down and hope something will eventually come along....
    ib1surfer 6 Replies
    • December 30, 2008
    • 02:22 AM
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  • Thank you surfer for your info..I go for checkups every 6 months for mine..I have had 2 trabec surgeries.The last one has worked very well for years now.I am on no meds for my eye although I stayed on some for awhile.My pressure stays around 8 to 10 in that eye...I to can only see brightness and am able to see my fingers (very blurry)if I hold them right near my eye.I hope one day for maybe a total eye transplant BUT that would only be if I ever lose sight in my good eye..And of course if they ever come up with such a surgery..I have heard of research on a bionic eye but I dont know much about it..If you know or ever hear of any new tx.for this please let me know and I will do the same for you..I will keep this thread alive and maybe someone/something will turn up..God bless!
    pramshur 18 Replies
    • December 31, 2008
    • 01:13 AM
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  • Update....Still hanging in there.Having some pain from dry eye but Dr. gave me Genteal gel to put in eye at night and it helps..How is everyone else doing?
    pramshur 18 Replies
    • February 12, 2009
    • 09:39 PM
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  • I was just diagnosed with Essential Iris Atrophy on 7/2/09 and am still trying to find out information about it. I don't think I realized how life altering this condition is until I read these posts. Not feeling too good about that. Please update with any and all information that is out there. It would be greatly appreciated.
    Anonymous 42789 Replies Flag this Response
  • I too have this condition, its been long since anyone contributed to this threat, I hope one day they will find a cure for this. Lack of research is worring and ordinary doctors have no idea about it, which causes late diagnose in many cases.My question is, is there an institude that may focus on Essential Iris Atrophy or a specialist? Oreven a centre for ICE? Its so worrying to go through such disease and not have access to information..Hope in the future there will be information available.
    celik_silo 3 Replies
    • November 17, 2012
    • 02:53 PM
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  • I was recently diagnosed with essential iris atrophy. I am on my way home from Baltimore, MD where I met with Dr. Harry Quiqley at Johns Hopkins Hospital. He made me feel much better about this disease than anything I read on the Internet. He had conducted a study of about 50 people with this disease and said the disease is NEVER bilateral (and anyone diagnosed with it being bilateral was later confirmed that it was a different disease). He also said there is about a 50% chance of some decreases vision but his guess only about a 5-10% chance of total vision loss in the affected eye if you stay on top of the disease! While I don't like the thought of taking drops the rest of my life, I feel this prognosis for my vision was better than I expected. I also worry about how this disease will affect the appearance of my eyes. Anyone out there feel it has really altered your appearance and do you wear contacts for that? Also, anyone have any side effects from eye drops? I am on Timolol 2 x a day. Hope some other people with this disease will chime in to get this forum more active! Thanks, Amy
    Aridge47 1 Replies
    • October 19, 2013
    • 09:27 PM
    • 0
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  • Any new information from the above entry's?
    My wife is in the process of getting diagnosed now and we are looking for help with a way forward.
    Thank you
    Anonymous 1 Replies Flag this Response
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