So, I get a lot of emails asking me the same questions and I thought, hey, those are some frequently asked questions.  And they’re practically begging to be listed on the blog so that inquiring minds will be satisfied. I’m sure I’ll update these occasionally, but feel free to email or comment with other, unaswered, burning questions.

What exactly is wrong with your brain?
So so many things.  But what you’re probably referring to is called Chiari Malformation.  Either my skull or my brain was not formed correctly and over time, the pressure increased so much that my brain herniated (my neurologist said to think of it like a tube of toothpaste squeezing out due to pressure) into my spinal canal.  The area that herniated, the cerebellum, is kind of important and does not much care for being squished.

How did you find out about the brain thing?
Well, I’ve had headaches almost all my life, but thought little of them since both my parents have chronic migraines.  I have also always been uncoordinated, but I noticed in late 2005 that the coordination problems were increasing with the strength and frequency of headaches, and once I started having trouble with my eyes (a condition called nystagmus, where they dart side to side of their own volition), I decided I needed to see a doctor.  My ophthalmologist ordered an MRI and the diagnosis sat right before our eyes.

How did you get the brain thing?
Most likely it was there from birth or resulted from a problem that I was born with.  I only had one other MRI of my brain prior to diagnosis and it was of my optic nerve.  Chances are, they didn’t see the bottom part of my brain, so it couldn’t have been diagnosed.  It can happen by way of trauma, but that’s doubtful, not that I’ve had a lack of hurting myself in stupid ways, but none that should’ve caused my brain to leak out of my skull.

What did the surgery do?
They removed a piece of my skull and the back side (lamina) of my top two vertebrae, released some connective tissue in my brain and added a patch of tissue (cow heart lining) to the lining of my brain.  They repositioned my brain a little higher and closed me up.  It was successful for about 8 months and then I had a new outbreak of headaches.

What’s next for the brain?
Lobotomy.  Lots of pills and medical bills.  After a lumbar puncture in early October showed very low pressure, we started to think that I might be leaking spinal fluid somewhere in my spine. So far a cisternogram showed no leak, an MRI came back clean and so did a CT myelogram. But each of those tests indicated that my pressure is decreasing instead of getting better and so the only explanation is that I must be leaking somewhere, maybe in a couple of places, but for whatever reason, we can’t see it on the scans. An MRI in late 2010 showed that my Chiari has actually gotten worse over the last year, which makes sense with all the low pressure forces, and my neurologist suggested that a second decompression surgery might be needed. I plan to exhaust every single other option before even considering doing this all over again.

What does it mean for your life/functionality?
I get dizzy easily, and I’m not allowed to ride roller coasters ever again.  I most likely cannot give birth out of my crotchal area because the pressure in my head (from pushing) could cause my brain to herniate more (tragedy, that).  I also fall down a lot, usually it’s funny and it’s totally okay to laugh. I’ve had a headache since August of 2009 and being in pain all the time has had a pretty profound impact on every part of my life. But if you were meeting me for the first time, you probably wouldn’t notice. I’m pretty good at hiding it, though that doesn’t mean it’s not real.

What are you going to school for?
Aside from Slappy’s name and our last name, this is the only thing I won’t divulge (and I won’t divulge that information because my husband has asked me not to and because he’s a pediatrician, blah blah blah, there are things here you wouldn’t want to know about your pediatrician and his wife, that’s all I’m saying).  I am going to a huge school, but my program is small and I don’t really want to be googleable for it.  And someday I might see you in a professional capacity and that would just be awkward.  This way, you wouldn’t know it was me at first and I’ll have a chance to convince you that I’m a capable adult, not the girl who writes totally inappropriate things on the internet. But for the record, I AM NOT IN MEDICAL SCHOOL, nor am I going into nursing. I hate puke way too much to do either of those.

Where’s your disclaimer?
Clever right? It’s right here.

I’m not a doctor and though I am married to one, nothing I say here should be taken as expert advice or suggestions on what to do with your health, medications or sanity. As you can see, I’m a tremendous trainwreck and assuming that I have any idea what I’m talking about would be a truly monumental mistake on your part.

I disclose when I am compensated for posts up front so that you never have to read it, but please know that I won’t sacrifice my integrity for a product or for money, so my reviews are my opinions and they are honest. Trust me, you’ll know, I’m an awful liar.