The Road To Here...

Brain Surgery! Wow. Even saying the words take my breath away a little. Before we get to that, allow me to back up a little...

Since the age of 15 I've found myself suffering from terrible incapacitating headaches. Luckily enough by age 16 they'd found the answer(s) to why:

The first being a 'Chiari malformation' [key-R-E]. This is basically where part of the cerebellum (the lower back part of your brain that mostly controls balance and motor skills), doesn't have enough room and is squashed downward into the spinal canal (where your brain stem and spinal cord meet). It's also sometimes referred to as 'cerebral herniation' (like a tummy hernia...but with the brain). My cerebral herniation measures 8mm. This sounds insignificant, especially to anyone who uses the imperial system and can't mentally gauge a millimeter, but it's enough that I've spent a good portion of my life heavily medicated from headaches.



from conquerchiari.org

The second puzzle piece is 'Syringomyelia' [psy-ringo-my-L-ia]. This is where cerebro-spinal fluid (of CSF) that surrounds and cushions your spinal cord from your vertebrae is actually forced inside the spinal cord causing a cyst-like little worm of fluid (or syrinx). Syringomyelia often accompanies Chiari malformations and is located in the cervical portion of the spine (the uppermost section), but in my case my syrinx is in my thoracic region (the next section down from cervical and above lumbar (lower back) ). Now - I don't know the significance of that exactly, just that it's uncommon. What does syringomyelia do? I'm not really sure. All I know is it eats away at nerves - particularly in peoples hands, feet, and face - and now I can stab myself in the hand and not feel it. *Funny side story - May 2010 I was attacked by a dog with about a zillion puncture wounds in my hands, flesh literally hanging off, and didn't feel them at all. Two inches up my arm where she bit and broke my radius...that I felt all too well*

from websters-online-dictionary.org, edited by me

When I was 16 a neurosurgeon suggested a surgery that could potentially make me pain-free and happy, but my mom didn't go for it - we won't go into that though. So I had a lumbar puncture to drain some of the excess fluid pressure that was making the syrinx worse. A lumbar puncture is where a doctor numbs your lower back slightly, then jabs a really big needle in between your vertebrae to suck out fluid. I've had a few at this point, and sometimes it doesn't even hurt, but sometimes like drawing blood, they miss and need to re-try and fish around in there. All I know is my age 16 lumbar puncture was one of the most traumatizing medical procedures of my life thus far....and I've had a LOT of medical procedures.

7 years later and I still have these headaches. Cue March 2011. On a trip to visit family in Boston I wake up violently ill with the worst headache I've ever had in my life! I go to an urgent care clinic, who rush me to the ER where I wait for 6 hours before they can get an IV started because I'm so dehydrated from puking up my guts. They get the IV in and then ...oops... our medicine dispensary computer broke and we're too stupid to get you anything manually. 8 hours in the ER and I finally get on dilaudid, a drug 8 times stronger than morphine. It hardly helps but just makes me feel more queasy and restless and uncomfortable. They do a lumbar puncture and find that the pressure in my spinal cavity is 30 (over twice what it should be). They diagnose me with 'pseudotumor cerebri' which as scary as it sounds because of the tumor part, has nothing to do with a tumor and just means excessive fluid around the brain.

From this point on I'm miserable all the time. Never a moment of relief. I'm taking diladid orally every day just to survive the pain. I go to my neurologist who puts me on medicine to stop CSF production but that's all he can do aside from prescribe more dilaudid. Desperate I stumble upon ASAP.org, an association for people just like me! All this time I thought I was so uncommon and rare, but actually, tons of people suffer from this kind of crap. I hear the name Dr. John Oro and to my surprise he practices right in my own city! A world-renown Chiari malformation neurosurgeon specialist is 30 minutes from me. I make an appointment right away.

Stay tuned to find out what happens next.