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"!

Curried Underwear ala Ten Year Old

Sometimes life just offers up one of those moments that you KNOW will make you laugh so hard your sides split open for years to come...however during the time when that faithful even occurs, you are left with varied emotions and none of them make you laugh. I had one of those moments tonight.

My family, like many others, is a typical nuclear-type deal. We are 6 people strong, dysfunctional as any other family, and all strong-willed and stubborn. This last trait can be clearly demonstrated by my daughter, who is ten years old, gorgeous, red-haired, and clever as a fox. If she likes something, it becomes clear immediately and she will completely engross herself in whatever-her-love-is. However, if she doesn't like something....well then, that's when life gets interesting for her poor mother (me) and her stepdad, who is still kinda new at this whole parenting gig.

On this particular occasion, my husband, who loves to cook international foods, had made a nice curry dish with veggies, chicken and a mild green curry. Not anything new to my children, as we've made it before. However, apparently on this night, my 10-year old (we'll call her A for short) didn't approve. So she did the usual maneuvers to try and avoid eating it: shoving it around on her plate, letting it get cold, whining, boo-hooing, and even filling her mouth up then running to the bathroom. We understood she wasn't a fan so we said "take a few (3) bites, and then we'll call it done" and she agreed this was okay.

Now here's where it gets good. Of course she was the last one at the table that night, so while we were all cleaning up, she decided she was going to get creative with disposal of her dinner. Since eyes were averted, she actually took her plate and dumped the curry, rice, and veggies all down her pants into her underwear. Then, after proudly proclaiming "I ate ALL of my dinner" she went to shower. Apparently everything that shouldn't have been in her underpants went down the toliet and her laundry in the pile. Situation resolved in her favor she thinks, all the way through dessert, a movie and bedtime. She must have been so proud of herself!

Well her little scheme may have worked except for one thing: I do the laundry in our house, and I pay pretty close attention to clothes for stains. So as I'm doing a white load, I notice these underpants with this horrible YELLOW stain down the front. I see they are A's and I'm thinking "What the HELL is THAT?!" I'm pretty horrified. I thought maybe she'd gotten a stomach bug and fell short of the loo....but the stain was down the FRONT of her undies. Since I know anything is possible when it comes to A, I figure it's safer if I don't even BOTHER asking what the hell she'd done to her new (no less!!) underwear. I just Oxy-cleaned them and prayed the yellow would come out.

Fast forward now to two or three weeks later where we are once again all at the dinner table. My lovely 8-year old daughter (whom we'll call K - starting to feel like I'm writing a "Men in Black" script here) starts telling us the story of A's clever disposal of her curry. A is horrified, sitting next to me, and you could tell she was just waiting for me to put the smack-down on her. But I was fascinated with what K was telling me. I honestly couldn't stop laughing....and the laughter not only grew but passed on to all of the family who were just rolling by the time K was done. A was in a blush and quietly squeeked "I really didn't like that curry that night", and that was all. Even my husband, who was a career Army officer, couldn't help but laugh. When she went to get up after dinner, we couldn't help but tease and ask her if we needed to do a check to make sure she wasn't shoving dinner down her pants. She was, in the immortal words of Queen Victoria, was NOT amused.

However, through all of this my 15 year old son, J1, had the best comment of them all. "Well it would have eventually ended up near her underpants anyways even if she had eaten it".

Priceless. And truly it's this kinda weird silly stuff that makes me love being a mom!