Nip/tuck: Chiari surgery explained

So, I'm gonna do the best I can explaining this, keep in mind I'm not a neurosurgeon, I just play one on the internet. I've had a lot of help from my friend Dr. Google, and he really deserves a lot of the credit here. Not only is he there for me at all hours, but he never blows off my pain or symptoms. In fact, he's pretty sure I'm either:

a) for sure dying
or
b) maybe dying, but definitely having legit pain.

Thanks, doc. You really know how to validate a chronic pain patient.


To the subject at hand...Chiari surgery. This surgery, which is also known as "posterior fossa decompression," is the only real way to try to "fix" a patient with Chiari. If you read my last post, you know that the basic problem that we Chiarians have is too much brain in a too small skull, resulting in the herniation of the bottom of the brain. Physics, man. What can be done to fix this? Turns out, not a whole lot. You can't shove the herniation back into the skull...there's no room for it in there, which is why it's smushed out into the spinal column in the first place. The only logical option is to try to expand the space that the brain is herniated into. Some surgeons will also cut off or cauterize the herniated part of the brain. Thank god neither of my surgeons have done that. Even though I've been assured that "you don't really NEED that part of your brain," I don't find that a very comforting line. Don't scientists only know about like 10% of the brain? How do they know I don't need that?! It's a moot point though, as my last surgeon did not cut off the herniation, and neither will my new surgeon. Whew.

Now, Chiari surgeries are a bit like jazz. You don't really know how they're going to go. They're unpredictable! They vary a lot by who is performing them, and what mood strikes them once they are in your head. But, step-by-step, they go a little something like this:

1. Wheel the patient down the hall into the O.R. Make sure she's conscious just long enough to see the enormous weird bed of foam she's going to lay face-down in, and the halo they will screw into her skull, to stabilize her head. Ask patient why she's crying. Is she nervous or something? Why?! It's going to be fine! There's NOTHING TO BE NERVOUS ABOUT. Oh, that? That's just the table of drills and screws for your head, don't worry about that. Look away.

2. Ask if her if she wants to climb on up in the weird foam BEFORE being knocked out, or be rolled (in a most unattractive fashion, I'm sure) after she's unconscious.

3. Knock patient out. Roll her naked white ass into the foam. Screw her head into the halo. (You didn't think I was gonna opt to do that awake, did you?) Shave the back of her head. Make a slit up the back of her neck. Be sure to cut her neck muscles too, for extra recovery fun.

4. Chip and saw away the parts of the skull that are compressing the brain. Perform laminectomy, removing outer area of the first (and sometimes second) vertebrae. As far as I know, they toss these pieces in the trash like old chicken bones. They will not be replaced with anything. You're just gonna have a dented sadness where they once were.

**Now, my first surgeon decided to stop after step 4, and sew me up. This proved to be a mistake - but that's a topic for another blog post.**

5. Cut a slit in the dura, and perform a duraplasty. The dura, in case you're not acquainted with this part of your anatomy, is a tough membrane covering the brain and spinal cord. Where the straight slit is cut, they sew a bigger, round patch on the slit. This essentially "lets out the seam" of the dura, so it isnt compressing the brain herniation as much. Think of it this way: you ate too many damn donuts again. Your pants don't fit. Your gut is bulging against the waistband, creating a pressure that is most uncomfortable. So, you cut a slit in the waist of your pants, and sew a bigger patch on that slit - and voila! You've made the waistband bigger, and relieved the pressure. This is the same basic premise that is happening during a duraplasty. The dura patch's composition material varies by the surgeon's preference. Some of them use a bovine patch (Moo!) and some will harvest some of your own scalp for the patch. My surgeon is planning to use Alloderm, which is made from cadaver. That's code for a piece of a dead person. It has already been rendered acellular, by some process I can't begin to understand. But basically, it's super clean cadaver tissue with no more cells leftover from the person it used to belong to. That whole aspect makes me feel kinda hinky, and I try not to think about it too much.

This is a little illustration of a duraplasty. I want you guys to know that I had to do a Google Images search for this picture, and it was really gnarly. I totally took one for the team looking for this friendly, sterile drawing. Google Images is NEVER your friend, unlike Dr. Google.

6. Put in titanium plate, to keep contents of brain in, and hopefully prevent neck muscles from adhering painfully to the dura. (<--- like the muscles did after my last surgery, leaving me in chronic, daily, awful neck pain).

7. Sew or staple or glue up patient. Surgical closure will vary by surgeon. My first surgeon used sutures, but that didn't go so well. I'm hoping for something a little less infected and weeping this time. Crossing my fingers for some glue, but the staple gun would do me just fine too.

8. Take patient to recovery room. Wake her up. Be ready for her to blow chunks! Prepare for her to scream, because throwing up 30 minutes after someone just cut up your brain and sewed up your neck hurts hella bad. (Side note: it's also really interesting to vomit when you can't sit up, or turn your head. Imagine where that vomit goes. Now imagine you have no hope of taking a shower for at least a few days. This is where it's key to have a support person who really, REALLY loves you. There's going to be puke, there's going to be crying, there's going to be a lot of gross stuff. It's messy. It's brain surgery. It hurts.)

9. Move patient to neuro ICU or regular hospital room. Ply her with opiates and bedpans. Release patient after 3 days or so, if there's no fever and she's made a #2 without her brain falling out her incision.

I think that's it in a nutshell! Needless to say, I am SUPER EXCITED to go do this again a mere 17 months after the first attempt. LOL. The first surgery was not successful, most probably due to my surgeon not going through the dura. I did get this bad-ass scar though:

So...the million dollar question: why on earth would anyone subject themselves to this kind of surgery again, with no guarantee of being cured?

The simplest explanation is: I want my life back. I NEED it back. I can function most days, with the aid of prescription pills, lots of rest, modifying my activities, and making people I love do the stuff that I can't. But that fails. I hate it all. And some days, there is no functioning. There is no getting out of bed. The pain and pressure in my head renders me useless and near tears all day. Awful.

I know I will always technically have Chiari, and I will always have to be careful of my head. I know I will be very lucky if this is the last invasive treatment I'll ever have for it. The official goal of this surgery is to stop the progression of neurological decline - but I know several people who have experienced a nearly total resolution of pain and symptoms. And call me greedy, but I want that so bad. It's what drove me to the first surgery. It's something I'm not ready to let go of yet.

 I know that the road to recovery will be full of pain and more pain. I'm gonna call in all my favors from all my friends and family, out of necessity. I'm gonna cause my family stress and worry. I'm going to drive us further into financial despair. But I have to try again. I have to roll the dice. I want to badly to be the girl I was just a few years back. I can almost taste it. I'm willing to go through another surgery, and I'm (grudgingly, sheepishly) willing to ask my friends and family to support me through it again. I'm so so so tired of being in pain, of the head pressure, of the constant stress of Chiari, hanging over me like a black cloud of awful. I'm bored to death with "taking it easy." Taking it easy for one day is awesome. Taking it easy forever is shitty and not living life.

I can't deal with the constant march to neurology offices and ERs and MRI tubes. I'm just so over all of this.

I'll be blogging more this week as I head to Columbus for surgery. Stay tuned, loyal readers...all one or two of you!