A new name for pseudotumor cerebri; plus, old statuses

I have a friend who is concerned they might have pseudotumor cerebri, except when they told me about it they called it “idiopathic intracranial hypertension,” and that’s how I learned it has a new name! I suffered from this in 2010 and 2011 (and it possibly actually started all the way back in 2007; it’s unclear due to heart medication side effects) and it’s the ultimate reason I got weight loss surgery.

In looking back on my posts on this subject, I discovered that there seem to be a lot of gaps. I didn’t write about the diagnosis at all, as far as I can tell. Blog posts for September, October, and November 2010, the months when I first noticed the problem and started seeing doctors about it, are extremely sparse. So I went back through my oldest Twitter account and my exported posts from my now-deleted Facebook account and pulled together some statuses about my eye. I figured I’d archive them here for my (and my biographers’) convenience. You can check out the pseudotumor cerebi tag for more context.

Eyesight stuff

So, next week I see my neurologist again. You remember, the one who told me I’d go blind if I didn’t lose weight fast? The last time I saw him, I had pictures taken of the backs of my eyes to see if my weight loss surgery and subsequent dropping of about 40 pounds had made a difference. Unfortunately, we didn’t seem to have any pictures from before the surgery. (I could swear my Augusta neurologist ordered some, but maybe not.) So it was impossible to tell anything other than my eyes were still really messed up, and I needed to continue taking medicine.

I had copies of those images in my hands for several minutes, and I could have taken a picture of them, but for some reason I didn’t even think to. But basically, when you look at the backs of someone’s eyes, you see a white ring in each one. They should be crisp. Mine look like someone went over them heavily with Photoshop’s Blur tool–or at least, that’s how they looked in mid-November.

I’d like to know if now they are less blurry, because that would imply the initial premise is sound and that weight loss will save my vision. So whether the neurologist thinks of it or not, I’m going to ask him to order new pictures.

Blind spot (UPDATED)

UPDATE 12/3/11: I mentioned this blind spot to my friend Ed while visiting Augusta yesterday, and he said, “It’s not just the normal blind spot that everyone has? The one that’s caused by the optic nerve?” I quickly covered my left eye and tested my right, and lo and behold, the blind spot is there too. It’s not new. It’s not a symptom. It’s perfectly natural.

What a relief!

The original, outdated, panicked post is below.

I recently got new prescription eyeglasses. The change was long overdue. Days later, I’m still adjusting to the clarity and “3D HD” sensation I’m getting from being able to see properly again. I hadn’t realized just how much my eyesight had changed, or how much I was compensating for it.

With my vision now corrected properly, other problems with my sight can therefore be attributed to my pseudotumor cerebri, the intracranial pressure at the back of my eyes that has been threatening to blind me. I’d thought that the pseudotumor symptoms had receded for the most part, and maybe they had; maybe I’m truly not feeling as much pressure as before, and my field of vision certainly isn’t going completely white anymore. But yesterday I noticed something, something I’m not sure I would have spotted without my new clarity of sight.

A blind spot.

There is a place to the left of center on my left eye where things disappear. If I don’t cover my right eye, its peripheral vision compensates. If I do cover my right eye, then look at something with my left and slowly track my eye to the right, eventually the item in question will disappear into a blurry haze. As I continue moving my left eye to the right, the item will reappear in the periphery. In other words, there’s an area left of center on my left eye that isn’t seeing anything.

I first noticed it when I realized I should be seeing more of my computer monitor in the background while watching TV than I was. I covered my right eye and it vanished completely. I was then able to reproduce the issue with the blinking blue lights of our wireless router; it was as if they weren’t there at all. After that I made the tip of my pointer finger disappear.

I suppose a visual field test might have revealed this issue, but I haven’t had one in over a year. At my eye exam, I did have photos taken of the backs of my eyes, and those showed a blurriness that indicated the pressure there has not receded. My neurologist told me to continue taking the medicine he prescribed, diamox, which is technically glaucoma medicine and a diuretic, meant to hold the fluid at bay.

The neurologist is the one who told me in no uncertain terms that I had to lose weight in order to avoid losing my sight. Now I’m seeing the truth of that. I had weight loss surgery, and I’ve lost over 40 pounds so far, but that’s apparently not enough yet.

And now I’m scared. Will more blind spots form in the meantime? Will sight ever return to them, or are those spots dead forever?