I have Iridocorneal Endothelial Syndrome
I have ICE syndrome. Was diagnosed with glaucoma at age 35. To be told I had GLAUCOMA seemed very strange and a hard diagnosis to accept initially. It only ever affected one eye (left eye) this seemed a bit odd to me as there was no family history of any eye diseases, but in particular no history of glaucoma.
Despite good compliance with a variety of drops over many years, the pressure in my left eye was always “out of control” ranging from 24mmHg to 36mmHg. Not long after diagnosis I had laser treatment. This was followed by a first trabeculectomy, then another trabeculectomy.
These measures worked to control the pressure initially but all failed within the first year. In 1996 I had a Molteno tube inserted in my left eye for drainage; it was around this time that my glaucoma specialist started referring to it as “ICE syndrome” – a term I had never heard before. He said my eye had the characteristic changes associated with the disease but not much else was known about it.
In the last 18 months, my eye has become excruciatingly painful with flare-up which involve severe pain and photophobia, severe watering, red eye etc. My left cheek aches. I have been referred to a corneal specialist who could see small blisters beneath my cornea and the characteristic changes associated with this disease.
He gave me a bandage contact lens to wear which gave me immediate relief and I have been managing to live a reasonably normal life with this contact lens which my local optometrist changes for me every 6 weeks. However these flare-up of severe pain, photophobia, extreme watering are now becoming more frequent and during these times I need to be without my contact lens which is just unbelievably painful. To be honest at those times I want to have my eye removed.
I'm looking for some answers, some support, someone who may be doing research into this disease, I'm desperately trying to find other people who may be suffering with this disease to see if they have been able to get some help with their symptoms and in treatment of this disease.
Are you able to help me or put me in contact with anyone who knows about this disease. What is the prognosis for this disease?
Comment - ICE syndrome suffer
Hi, I was also diagnosed with ICE syndrome approx 20 years ago by a very neuro ophthalmologist. The pressure was high at that point and he put me onto diamox tablets back then 8 per day.( They never would recommend these nowadays.)
I also have the lesions in my right eye.
It is such a rare disease,not much is known or understood about it.You must find a good ophthalmologist (who knows about this) for regular checks. I am down on the books for cornea transplants,even though my eyesight is okay. , I have been having great difficulties standing up in a dim lit room (restaurants,movie theaters,going out anywhere for dinner.Have to be in a wheelchair.)
Cannot stand any sort of glare in my room to sleep at all. Very light sensitive etc. I have been off any tablets or drops for my ICE for the past 3 years now as the tablets over such a long period has done damage to my body.
Having problems and had to be rushed to see my ophthalmologist yesterday as when i was walking around I got big dark streaks come over my eyes.Then it broke up into smaller ones and was very frightening. He is watching it for now.
That is the latest and I look forward to hearing from others with this strange eye problem.Any help or tips would be great and am willing to swap notes.
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