Four Weeks Post-Op: Gnarly Scar Pictures!

I’m good with titles – hopefully the “Gnarly Scar Pictures!” title was enough to get you to read. It’s been almost four weeks since my Chiari decompression surgery, and I’m recovering beautifully. I could not have imagined what this experience would have been like, but I’m better for it and so thankful that I had the surgery.

My neurosurgeon completed the surgery in 45 minutes (he was planning on one and a half to two hours) and apparently, my anatomy is pretty darn perfect (insert joke here). Because of that, he was able to reposition the dangly tonsils and move them up a bit back into my skull, which according to him is very rare. After surgery I spent four nights in the hospital and can’t say enough about the staff at CMC. From the ICU to the 9th floor of the Neuro wing, every single nurse and staff member took remarkable care of me. Minus some wicked nausea and a wee bit of pain (okay, maybe more than a wee bit), every day gets better with more activity, function, and time spent awake. Working through the fatigue is the biggest hurdle at this point. But I’ll gladly take the fatigue since most all of my Chiari symptoms have disappeared: no more tingly legs and pain in the arms, all the tension in my neck and shoulders is gone, and when I step out of bed in the morning my feet feel normal, not asleep and weak.

It’s amazing how a community can come together to rally around someone who needs help. I have never understood just how important that can be to someone until my brain surgery. Twenty four meals, countless well wishes and cards, elves who raked my yard, a husband who never let a ball drop, family and friends who never let our girls miss a beat – countless examples of how lucky I am but more importantly that the world is indeed full of good and gracious people.

So on this Thanksgiving… oh jeez that sounds so sappy given the author. But I’m having a hard time making a joke about this or being sarcastic. So I’ll go back to sappy. On this Thanksgiving, clearly I’m thankful that I had successful brain surgery. But I’m most thankful for everyone in my life (family, life-long friends, elves and friends on Twitter, Chantilly Montessori friends, parents, and staff, neighbors who make this ‘hood my favorite place to be…) who have helped me, Troy, Kate, and Emma stay afloat during one of the strangest experiences this family has been through.

Happy Thanksgiving. And *cheers* to my happy brain!

26 DAYS AFTER SURGERY

I've Got Brains that Dingle, Dangle, Dingle

Next Thursday, October 29th, I’m having Chiari Decompression surgery at CMC Main. I have an Arnold Chiari Malformation Type 1 with a syrinx. Sounds complicated, but it’s actually very simple. My brain has “tonsils” in the back lower section that hang out of the base of my skull. No, my brain is not too big for my skull. Kate says that my skull is too small for my brain. I just say that my brain “dangles.”

The tonsils impede the flow of cranial fluid which has formed a syrinx (cyst) of fluid in my spinal cord. The syrinx is growing, so my doctor has recommended surgery to prevent any irreversible damage to my spinal cord. The surgery will release the pressure on my brain and allow the cranial fluid to flow as normal, theoretically minimizing the syrinx.

Here’s how the surgery works: Going in through the back of my head and neck area, the doctor will remove a portion of the bone at the base my skull and first vertebrae. He’ll then cut an incision in my brain’s dura (the brain’s protective outer layer). The incision will create a “Y” opening in my dura that will release the pressure it’s currently putting on my brain. He’ll patch the expansion in my dura with some type of patch (most likely the lining of a cow’s stomach, or perhaps cadaver dura), sew up my head, and send me on my way. I’ll be in the ICU overnight, and then in the hospital for an additional 2 – 3 days. And then, most likely craving Chik-Fil-A (get it? Because of the cow stomach lining?).

About three years ago I went to the emergency room with a violent headache. The doctor performed an MRI and discovered the Chiari and syrinx of fluid. We’ve been monitoring it ever since with annual MRI’s. I have been very lucky – most people with Chiari have pronounced symptoms that affect them daily (debilitating headaches, tingling in appendages, tension in head and neck area, nausea, dizziness, imbalance). Thankfully I would only experience an awful headache about twice a year, three times at the most. But in the past nine months, my symptoms worsened. And when I had another headache in August, I went in for my MRI and they discovered that the syrinx had grown. Now I realize that I, too, had been experiencing all of the more pronounced symptoms, but I linked them to stress. I never linked them to Chiari.

Recovery – that’s the unknown part. I’ll be exhausted, physically and mentally, for a couple of weeks after the procedure. They’ve told me to plan to be “doing very little” for six weeks (does “very little” include a matinee premiere of “New Moon?” on November 20th? It does? Good). My doctor said that every available energy cell will direct itself to my head and neck area as I heal, and that I need to rest as often as possible to allow the process to work properly. Stitches come out about 10 days after the surgery, and I’ll hopefully be cleared to drive about three weeks after the surgery. Just in time for Black Friday shopping after Thanksgiving. I’m kidding. (Am I?)

So that’s pretty much it. Feel free to joke with me about my dangly brain, or about the cow lining I’ll soon have in my head. I’ve been laughing my way through this entire process. In the grand scheme of things, this is really no big deal. Sure, its brain surgery, but it’s also preventative surgery. And it’s (hopefully) a one-time only deal. I consider myself lucky that I don’t have anything wrong that can’t be fixed. And while this surgery is rare, I have complete faith in my doctor. He said to me “We don’t perform Chiari Decompression surgeries all the time. But the procedure is the beginning and ending of every craniotomy I do, just without all of that stuff in the middle.” Like removing a tumor, or eradicating cancer. So I’m considering myself pretty low on the neurosurgery totem pole.

We’ll keep you posted with updates, and I’ll most likely include silly, rambling posts to occupy my time. Much thanks to Kris Daniels for setting up this blog. And to Sheri for arranging the meal train (food is love, a certain friend always tells me). I know I’m a good person, and that people (generally) like me, but good gracious, folks – nothing like having a bit of brain surgery to fully understand how much you are truly loved. I can’t thank all of you enough for the positive vibes, prayers, thoughts, laughs, and hugs.

More to come…

xoxo

Molly