Meeting Dr. Oro

My first impression of Dr. Oro was a man who talks too much and sees patients as numbers to add to his surgery tally, but as appointments went on, I found him to be a kind man who does in fact see patients as people, and will answer any and all questions if you can slip them in between his exuberant breaths of speech. I was at first convinced he would want to do surgery right away and have that be that, but both to my delight in feeling confident in him and in my frustration at the process being slowed, he ran about a million tests to rule out other possible factors.

Okay, so a million is exaggerating. He did an MRI of my head, a MRI of my cervical spine, a cine-flow (seeing how the fluid moves through my spine/head), and an x-ray to see the extent of my scoliosis. Oh yeah, I also have scoliosis, or in layman's terms, a very crooked spine. When these came back with my 'insignificant' Chiari malformation, and no evidence of this syringomyelia I told him I had, he ran more tests. An MRI of the rest of my spine (revealing my uncommon thoracic syrinx), to make sure I didn't have 'tethered cord'. This would have been if the bottom of my spinal cord had fused to my spine and instead of having a true Chiari malformation, my brain was simply getting tugged down into my spinal canal over time by the brain stem. Luckily, I don't have this.

The last thing he wanted was a repeat spinal tap. If my CSF pressure was still 30+, the surgery options would be different. Luckily my opening pressure was only 16 (only slightly above normal), and they drained a bit so it's down to 11 as of most recently (normal). This spinal tap kind of sucked because I had to lay flat on my stomach while the technician attempted twice before being successful on the third time, to get the needle through my vertebrae. I had been prescribed Valium to take before the procedure this time, but unfortunately I didn't feel the effects till about 4 hours later when I was home.

So since my spinal cord's not tethered, I don't have excessive fluid pressure in my head, and nothing else seems terribly out of the ordinary, I'm officially a candidate for 'Posterior Fossa Decompression' surgery. This is where the doctor is going to shave a strip of my hair on the back of my head, cut, take out a small piece of my skull, open the sac that my brain is in, pull down some tissue from higher up that lines my skull, stitch that over the brain, and then (hopefully assuming my skull is thick enough, screw a titanium plate over the missing skull), staple me up, and voila, done. The surgery takes about 3.5 hours, requires 1 day in the ICU, and a 2-4 day hospital stay. If you youtube it, you can find all sorts of gory videos.

As terrifying as it is, the risks are really minimal and the same as with any surgery, and I'm also somewhat excited at the prospect of not having headaches and not living off narcotics anymore. It only works for 80% of people, but for the agony that I'm in on a daily basis, 80% is a damn good odd. I worked towards getting it scheduled the same day as I last saw the doctor, and will anxiously be thinking about nothing but this for the next month while I await my hopeful salvation.