Friday, March 22, 2013

Psuedopapilledema - or what I like to call "An Outie"

You ever hear of a particular medical anomaly and wonder "What the.. ?" Well I have.. and Psuedopapilledema is one of them. I call it an 'outie', you know.. like a belly button? innie vs. outie?

Let me give you a link:

There are many definitions listed there from many different medical dictionaries, but the most common definition is : anomalous elevation of the optic disk. Typically the back of the eye has a valley in it, that looks somewhat like a drain. That is where all the nerves come together and exit the back of the eye. Sometimes, usually if there is something pushing on the back of the eye, this valley turns into a mountain

A few years ago we switched eye doctors for my daughter. I was a bit grumpy about it because I liked the one we were using, but this new one (we'll call him Dr. I) was covered by her father's insurance. The first visit was very thorough. They even did a scan of the back of the eye. That's where the fun started. The tech did the scan, but when the doctor looked at it he said it was inverted and needed to be redone. So they re-did it. When he viewed the correct scan, the questions started, and my fear increased. The main question was about headaches. Did she have a lot of them? Did they not like to go away? Thankfully, the answer was no. Headaches are very rare, and are usually fully explainable (like when she was hit in the head with a rifle).

So Dr. I was majorly intrigued and excited. You ever see a doctor get excited about something? It's kinda fun.. and scary all at the same time. He said he had heard about this but had never seen it in real life. He also said that for the next few years we would run a new test each year and monitor it to see if there was a change, but that for the time being, there was nothing to worry about. If persistent and frequent headaches started to call him IMMEDIATELY. We have done five different tests and the full scan twice now, and nothing has changed. Not the shape or size.

THIS is what got him so excited:

This 'mountain' is normally a 'valley'.

We talked a lot with the doctor as to why this happened, what causes it, and what we can do about it. Since she is not showing any signs of a brain tumor (the typical thing that pushes on the nerve), he figures it is a genetic condition. More than likely, her optic nerve is longer than normal and ran out of room behind the eye, so it's pushing into the eye.

To put is simply... my daughter has a lot of nerve.


  1. Wow -- I've been to several opthalmologists (I am about as good at sticking with them as I am at spelling them) and I'm always told that I have a large (or larger-than-normal) optic nerve. This prompts a test for my peripheral vision, which reveals nothing of concern.

    I've never seen, or heard of, a 3-D image like this. I'll be sure to ask about it at my next appointment - which I really should schedule, like, now. Thanks for this info! Definitely something to keep an eye out for (no pun

    But to state the obvious: I'm so glad it's not a brain tumor.

    1. Thank you! We're glad there is no tumor also. She likes to say it is extra brain cells, not a lot of nerve. ;)

      We did the peripheral vision test too, and hers was also normal. I am now extra interested/curious if you have an 'outie' also. We don't know anybody else. You'll have to post about it.

    2. We are going through this same thing with our daughter. I am trying to not get worried. However, it is difficult. I am glad your daughter is well!

    3. Prayers for your daughter, Pam. All will turn out ok.

  2. I just recently was told that I have "outie" optic nerves. I have suffered off and on for the past 16 years with chronic headaches and migraines, the last 8 years being chronic daily headaches and migraines resulting in me having surgery in January of 2015 to have a bilateral occipital nerve neurostimulator implanted for them. Thankfully the stimulator has been working beyond what we were expecting. I barely have headaches let alone migraines and when I do the pain isn't as bad as it used to be.

    My Ophthalmologist is sending me for a CAT scan and will be following up with me about my optic nerves. Now I'm trying to learn what I can about this condition and if it's connected with my headaches and migraines. So glad I came across your post and glad to hear your daughter isn't having headaches and doesn't have a tumor. I hope she continues to have good health.