Friday, March 30, 2012

it isn't brain surgery! it might be brain surgery...

So I guess each part of your brain has an area called home and it's fairly important that it not infringe on any other part's space. This is what I am inferring from my doctors and the internet, anyway.

Let me back up.

Almost three years ago I was talking to my friend and then co-worker about something unrelated to work and as I stared at her gorgeous face I could see her eyes, but not her lips. This is not normal, we know. This type of pixilated vision lasted for about 10 minutes, but I had no other symptoms. I called the eye doctor, who had me come in and ran some tests. He said my eyes were okay and determined I was the lucky person blessed with an occular migraine, but no headache.

These types of symptoms persisted, with pressure behind my eyes, blurred vision, and some severe headaches, but not always in conjunction with one another like a typical migraine. My doctor at the time sent me to a neurologist, who sent me for an MRI.

The MRI showed a speck in my frontal lobe, which was determined to be no big deal and I was given topamax to prevent my persistent headaches. I didn't realize, until after starting the medicine, how frequent my headaches had been. They were days, sometimes weeks, at a time. I felt better for a long time.

A year later I had a follow up MRI to check on that speck; no speck, as predicted, but there was a Chiari Malformation Type 1. I was told that my skull didn't form correctly and didn't allow enough space for my cerebellum, which was starting to push itself down into the space above my brain stem. The radiologist measured it at a 6mm herniation and I was told that since I didn't really have any symptoms, we could just keep an eye on it.

It's been a little over a year since then and I decided that I really wanted to see a new neurologist. I wanted someone closer to home, I had heard lots of good things about this doctor, I was having more headaches but kind of hating the topamax, and my gut told me it was the right thing to do.

My new neurologist and his assistant spent 45 minutes with me and determined that I am having a number of neurological symptoms (tingling in my neck, hands, and feet, pain when bearing down, dizziness, blurred vision, etc) related to the chiari, not just headaches, and that I need to see a neurosurgeon to determine if surgery is appropriate. Right now I am waiting -- the appointment is set up for April 27th -- and trying not to freak out about the disruption this may cause to Punkin's life.


Holly Roos said...

Praying for you. Let us know if we can help in any way. (hugs)

Jennie said...

sending love.

Anonymous said...

Wow. We'll be praying for you.
Lots of love, AK and UM

Kristiem10 said...

Yikes Erika. I will keep you in my prayers. Love you.

Anonymous said...

We'll be praying for you hon. Call me if you need anything! Wendy

Bonnie@TheFragileXFiles said...

It's always something, isn't it! I'm praying for you as well.