Monday, May 9, 2011

Punctate Inner Choroidopathy -Or- My Crazy Eye

Those of you that follow me on twitter are aware I've been having some major weirdness in my right eye over the last couple of weeks.

As someone that has always had bad vision, losing my eye sight has always been my biggest fear. Having an eye do strange things where one Ophthalmologist even said, "I've never seen anything like this before" ... well, it's disturbing, to say the least. I waver between wanting to share with everyone what is going on to just wanting to be left alone and hope for the best, so please understand.

About two weeks ago, I noticed a blurry/fuzzy spot in my vision. I called Kaiser, where fortunately I had already been referred a few months back to Ophthalmology due to 2 spots my optometrist detected on my retina [1]. My optometrist was concerned that I might have Presumed Ocular Histoplasmois Syndrome (POHS) - blood tests confirmed, though, that I did not.  My doctor in ophthalmology told me to come back in 6 months or if I noticed any vision changes. That brings us back to two weeks ago.

I was initially told I'd have to wait until May 10th to see someone, but as every day I had new flashes and fuzzy spots, I didn't want to wait. I showed up at the main hospital and sat until my ophthalmologist was able to see me (he took me on his lunch break). He ordered lots of tests: OCT (retina scan), Optomap (picture of the back of the retina), Visual Field Assessment (fuzzy spots and flashing lights cause problems with seeing little tiny dim flashing lights in peripheral turns out), and an optical angiogram (where I was injected with yellow dye, dilated and more pictures were taken of my eye to check for bleeding - there was none -  *whew*).

Still, my ophthalmologist was stumped. He could see there were things going on in my retina, but it was nothing he'd ever seen before.  He sent me to a retina specialist for my next visit.

My retina specialist has seen something like this before: Punctate Inner Choroidopathy (PIC for short!). I'd give you a link to a great sight on this eye disease, but... none exists. It's a very rare condition that nearsighted, healthy women in their thirties get.  My specialist gave me a great paper on it, published in the Survey of Ophthalmology in January 2011 by Dr. Radgonde Amer and Dr. Noemi Lois.  Unfortunately, the major conclusion of this paper is that PIC needs more research.

There are no known treatments, and the majority of the cases spontaneously get better on their own with no long term vision impact. It's the side effects that can be problematic, so let's hope I don't get any of those!

Fortunately, as of now, my central vision is still crystal clear and my left eye is 100% normal, so I can still totally and safely function in my daily life.

But, still very freakish.  I have toyed with whether or not to write this blog post - perhaps it's over sharing. I don't know, at this point I kind of want to share to see if anyone has any ideas or luck with any experimental treatments.

So, let's hope I'm in the majority of this one!  And let's face it, there are worse things to get!

[1] In 2008 I had very similar symptoms as to what I'm having now, but was diagnosed with having a perfectly normal vitreous detachment. Well, 2.5 years later, my optometrist noticed the retinal scarring, and presumed POHS.  Drs. Amer and Lois said in their paper, "After 2-3 years, some scars become distinct and pigmented and resemble the scars associated with POHS."  So, I'm betting I was misdiagnosed before. Not that it makes a difference, as there is no treatment for either vitreous detachment (it's caused by age and onsets earlier for the nearsighted folks) or PIC.  But, knowing I probably had this in 2008 and completely got better... well, I'm very hopeful for a full recovery).

September 19, 2012 Update:

As a lot of you have asked, and I've failed to write a new blog entry on this subject, so I just wanted to give you an update!  My eye has stabilized after one oral course of Prednisone and one injection of cortizone in my eye itself. I regained almost full vision, with just a small fuzzy spot in between my central vision and peripheral vision that correlates with scarring on my retina. I was lucky and did not get any bleeding (CNV).  I hope that it stays this way.  And, thank you everyone that has commented and brought to my attention these great sites: PIC World, Eye Wiki - PIC page.  We are not alone! Here's to stable vision!