Here's to Life, Liberty and the Ability to Once Again Move One's Neck

So as my real-life friends (and family of course!) know, I'm recovering from brain surgery.

Yes, you read that right, I said BRAIN surgery. When you read it, imagine one of those horrible zero-star Sci-Fi movies with zombies mumbling 'Brrraaaayyyyyynnnnzzzz'. Yeah, you got it.

Ok, back from my attention-deficit moment...so I had brain surgery in September to fix a congenital abnormality in the back of my skull called an Arnold-Chiari Malformation. Essentially what the problem deals with is the space in the back of the head for what is referred to as the 'hind brain'. Think back to Biology 101 or High School Bio when you learned about the Cerebellum. My kids call it 'brain broccoli' because, well, it looks a little like broccoli on MRI or CT scan. The lower part of the Brain Broccoli begins to get squished down the hole in the bottom of the skull that the spine comes up through (the Foramen Magnum). The more squished it gets, the more it cuts off cerebra-spinal fluid flow around the brain and spinal cord, causing all sorts of GREAT symptoms (let me just name a few):

1. Headaches that start at the back of the head and shoot forward behind the eyes. These are often mistaken for migraines, which is what happened in my case.

2. Chronic Fatigue Syndrome - is exactly as it sounds. You are always tired. But not just any tired; we're talking joint-aching exhaustion that lasts every waking moment. Often, this looks like Rheumatoid Arthritis or Fibromyalgia.

3. Random Onset, Increasingly Intense Anxiety that laughs in the face of Zanex or most other anxiety drugs. (This is usually caused by that lovely misplaced brain broccoli pushing up against or rubbing on the brain stem)

4. Restless Leg Syndrome - At night, this is when the legs get random nervous system sensations that feel like shocks running up and/or down your legs. It often is treated with drugs like Neurontin or Lyrica and can be associated with Fibromyalgia or just on it's own.


Now these are just FOUR of the 25+ symptoms that go along with having a Chiari Malformation. Most symptoms don't show until you are in adulthood, and often are misdiagnosed for years until someone thinks to do an MRI. Up until recently, the treatment was, once an MRI was done, the radiologist and your ordering doc would determine how big the Chiari is and then decide if it needs evaluation by a neurosurgeon or anti-inflammatory treatment. However this, fortunately, is changing. What neurosurgeons are now finding is that it doesn't matter how far down the hole the brain broccoli has slipped - it only matters how it is affecting your cerebra-spinal fluid flow and how symptomatic it leaves you. If your CSF is cut off or limited, its surgery-city....but by that point you'd welcome the surgery because frankly the symptoms are miserable and you are probably going to be sick of doctors misdiagnosing you or playing 'guess that diagnosis' like you are some kind of rat in a lab.

In my case, my cerebellum had herniated almost 8mm down into my Foramen Magnum. I was sick (think 'admitted to the hospital or being seen in the ER everyday' sick) for 6 months. Finally, we saw a neurosurgeon at the University of Utah who does about 250 Chiari decompression surgeries a year. Dr. Schmidt was fabulous. He reviewed the various digital imagery and said, without a doubt, the shape of my skull was causing problems and I needed the surgery. So 3 weeks later, they did their magic in the Operating Room, and I came out with a super sore neck (of all things!!!) and no more headaches, exhaustion, minimal anxiety, and reduction in the other dozen or so symptoms I had.

Some may wonder why I'm writing about this. Well, for a bunch of reasons honestly. One - I blog for myself, which might disappoint some of the readers (haha) , but more importantly, because Chiaris go undiagnosed or underestimated by at least 1 in 5000 people. Some studies show it could even be as often as 1 out of every 1000 people. So these people suffer in silence with ever-increasing symptoms, diagnosed with disease processes they don't have, or dealing with doctors who think they are hypochondriacs and drug seekers. Plus, to be honest, I've read a ton of blogs where people have the surgery and then do nothing to move forward, which in turn causes different problems. My hope is that even one person reads this and is empowered to get checked out, or demand good rehabilitative care after surgery so their quality of life improves.

Having said that, the ability to move my neck refers to the fact that you come out of surgery barely being able to move your neck due to how they get in to fix you. I am lucky; my neurosurgeon told me prior to surgery that my neck was going to be a mess, and that physical therapy was mandatory starting in week 3. I'm at week 5 (almost 6) now, and the PT has helped exponentially. I have almost my total neck range-of-motion back from side to side, and I'm not nearly in the pain I was even 3 weeks ago. So if you are a fairly recent Chiari decompression patient, and your neurosurgeon didn't tell you to go get rehab/Physical Therapy, then have your regular physician write you a prescription and go get started!! Usually insurances cover it, and you'll be more than thankful you did so after you get past about week 2, I promise!!

As far as my personal recovery, I'm very blessed. Even though this surgery demands a minimal 6 month hiatus from work, I feel better than I have in YEARS. Many of my symptoms are gone, and the headaches don't plague me anymore. It's fabulous! In addition, I even managed to find my sense of humor once again, which is driving my family NUTS, so of course that makes me even happier than I would be otherwise :-)

So to summarize my rambling, if you are experiencing the symptoms I discussed, and have been diagnosed without resolution for years, ask for an MRI. You may be the 1 in 1000, who, if caught early, could experience complete resolution if you can manage to get the problem diagnosed correctly. And for those of you recovering, I have two letters for you - P.T. Otherwise, to quote Mike Myers in 'So I Married an Axe Murderer', you'll feel like your head is "...an orange on a tooooothpick"!