Tuesday, March 14, 2017

ICE Syndrome is a crazy rare eye disease you've probably never heard of

Iridocorneal Endothelial Syndrome or ICE Syndrome is a crazy rare eye disease you've probably never heard of. I didn't even know it existed until 2014. According to the American Academy of Ophthalmology,
ICE is actually a group of conditions related to changes in corneal cells and the iris. The syndrome almost always involves cells moving from the cornea to the iris. Loss of cells from the cornea can cause corneal swelling, and the iris and pupil can become distorted. Also, when the corneal cells move, they can block fluid from draining properly through the eye’s microscopic drainage channels. This blockage causes pressure in the eye to build, leading to glaucoma.
ICE is rare and unstoppable, however, the glaucoma associated is treatable and if caught soon enough, a person with ICE doesn't need to suffer vision loss. Corneal transplants are often needed eventually because of the loss of corneal cells and swelling.

I decided to write about my diagnosis of ICE because I am one of the lucky ones--I was diagnosed fast and early. There are many eye doctors I have talked to who have no idea what ICE Syndrome is. In fact, my first phone call to a local optometrist resulted in a long delay in making my first appointment.

Before that first phone call, I felt like there was something a little gritty in my right eye. I started having terrible headaches and some days I saw rainbow halos around lights. My brother advised me to see an eye doctor, so I made the call.

May 2013 - I had ICE Syndrome at this time, but didn't know.

When I called the optometrist's office and asked for an appointment, the receptionist asked me to describe my symptoms. She then put me on hold to confer with someone. When she came back to the call, she told me I didn't need to come in because I was having an ocular migraine. She said people had them all the time and I should go read about them.

I read everything I could about ocular migraines, but my headaches got worse no matter what I did and some days my eye was so light sensitive I couldn't go outside. I decided to call a different optometrist. This time I successfully made an appointment.

At the optometrist appointment, I got the first bad news...I had glaucoma in my right eye. He prescribed some glaucoma controlling eye drops and scheduled me for a follow-up visit. At my follow-up, my eye pressure was higher than it had been at the first appointment. He quickly referred me to a glaucoma specialist.

This is where I was lucky. The glaucoma specialist in Dallas had not only heard of ICE Syndrome, he had experience with it and diagnosed me after a long day of testing. He sent me to a cornea specialist to confirm the diagnosis.

Photos of corneal cells. Abnormal right corneal cells pictured on far left and close-up far right.

The trouble with having a delay in the diagnosis of ICE is that the glaucoma is so aggressive and hard to control because the corneal cells actually block the natural drains in the eyes. I tried just about every eye drop on the market with not much success and many side-effects. I was allergic to several types and ended up with a severe corneal ulcer before the doctor suggested eye surgery.

Corneal ulcer survival gear: Giant sunglasses, hoodie, serious face.

Eye surgery changed my life. My eye doctor put a shunt in my eye and now my glaucoma is under control. I still have to use eye drops three times a day and nothing can stop the migration of the corneal cells, but with my glasses, my eyesight is 20-20.

Eye surgery is so glamorous.

Now, in 2017, I can even joke about my ICE. I tell people to call me the great-granddaughter of Sigurd Snake-in-Eye from the Icelandic Sagas.

Close-up of the distorted pupil in my right eye...call me the great-granddaughter of Sigurd Snake-in-Eye.

I have 20-20 vision post-surgery with my Buddy Holly-esque eyeglasses.

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