I eased off my blog several months ago when my health took such a turn that I could no longer work, and as the fun-filing-paper-pushing started, I thought it best not to blog. Well, that and my energy comes as a rare commodity, and it usually got sucked into something else online like, you know, important things. Uh...like Facebook.
In this time I've been off-blog, I've been busy collecting doctors and diagnoses like Breyer models. First diagnosis, as I posted about here, was Hashimoto's thyroiditis, an autoimmune thyroid disease. Then came the nebulous fibromyalgia. Then came Arnold Chiari Malformation, type 1, followed most recently by obstructive sleep apnea.
The most problematic--in many freakin' ways--is the Chiari malformation. The whosie-whatsis? Chiari--as in:
I shall put my teacher hat on (actually, I never really take it off; I think it's grown into my skin now and there's no removing it) and explain.
The back of the brain has these parts that hang down in the back, under the cerebellum, called the tonsils. For most folks, your brain and tonsils look something like this:
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| Ah, it's so cute |
Then there's me:
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| I actually fell asleep during this MRI. Zzzzzz... |
Okay, still a bit unclear, I'm sure...so, here's a labeled diagram I made using fancy software (or, just what came on my MRI CD).
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| Look, arrows...oooohh |
Let's see...well, there's the classic Chiari headache, severe, dull, unresponsive to any medication, that seems to grab the back of my head and squeeze it like a nutcracker. The pain radiates forward and out my eyes. In short, it sucks, like, a LOT. Lying down makes the pressured pain worse; oftentimes, a lot worse. During a recent MRI, where I was required to lie still on my back, the pain became so severe I grew dizzy and nauseated. It was excruciating. Then, bonus, when using the mirror afterwards to put my earrings back on, I was shocked to see both of my eyes were severely bloodshot, presumably because of the intense pressure.
Sometimes the headache just appears, and sometimes things like coughing fits, loud talking, singing, and even laughter trigger it. Sneezing? Well, with a lot of Chiari patients that's a trigger too--but for me, sneezes don't trigger pain. They trigger the feeling of a thousand ants crawling up the side of my head. Yaaaaay.
I tell people I have this big grab bag of symptoms, and every day my body reaches in and grabs a couple of fistfulls. There is no real rhyme or reason. I've lost temperature sensation in my lower right leg (touch me with an ice cube, and I know you're touching me, but don't feel the cold); I have constant hand tremors that vary in severity; I have obnoxious fatigue that my mother has described as me being half dead, not just asleep; my muscles will spasm with minimal use, painfully seizing up in protest like I've run a marathon; my vision will go hazy, like looking through dirty glasses; words get tangled up in my mind and struggle to exit my mouth; I stop at green lights because of bizarre "brain fog;" I'll become dizzy out of nowhere; I'll become nauseous (and occasionally dry heave or vomit) out of nowhere; my hands will swell like when I was 9mos pregnant; my joints will ache and throb in body-swallowing pain...yeah. The list goes on. Par-TAY.
Worse, though, is Chiari has the double whammy of being rare and misunderstood. Doctors are uninformed, and pass that misinformation on to their patients. Despite the research everywhere saying herniation size doesn't matter, symptoms do, I've had multiple doctors tell me my 4mm herniation is too small to be behind my symptoms. I've also had a neurologist and two neurosurgeons mismeasure my herniation and try to tell me I don't have a Chiari (yeah, no; three radiologists and two experts disagree).
Frustrated, I was ready to give up on Chiari completely when a young woman I met on an online Chiari support group encouraged me to send a Hail Mary pass to Dr. Bolognese, a specialist considered to be one of, if not THE, world expert on Chiari malformation. UCLA neurology, no slouch themselves, defer to him and called him and his former work at The Chiari Institute (he now has his own Chiari Neurosurgery Center) as the best in the world. I shrugged and filled out his 19-page questionnaire, packaged it up with copies of my brain and cervical MRIs, and sent it to him in New York. I was shocked when his office called wanting to set up a Skype videoconference appointment--he uses this often with his out of state and international patients. Bolognese does not see you, in person or on Skype, if he doesn't think he can help you. So, hubby took the day off and we spent nearly an hour Skyping with Bolognese, whom we found funny, attentive, thorough, and innately curious--he wants to know what is up with me.
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| Hi, I'm Dr. Bolognese, and you're not |
He described how many doctors are very conservative about treating Chiari, which is understandable as the only treatment is a type of brain surgery called decompression. These docs only operate when the herniation is 5mm or greater (come ON, one measly millimeter?!) and all the boxes are checked indicating Chiari is an issue. This gives them a high success rate; however, he said such an approach inevitably leaves some patients out in the cold. Since Chiari can be so bizarre and not give a crap about what boxes it checks, a lot of patients can be left out in the cold in this approach.
Dr. Bolognese appeared on this episode of Mystery Diagnosis, describing and treating this poor girl's combination of Chiari Malformation and Ehlers-Danlos Syndrome.
But, when you get a 4mm herniation in a patient that "smells funny" like me (we laughed when he said that and hubby starting sniffing my hair), you go in for a closer look. And well, that's what we're doing right now: putting on the magnifying lens and putting our noses to the page to see what is revealed. I just sent him a copy of a special MRI that studies the flow of cerebral spinal fluid; we'll see what he says, hopefully by the end of the week.
I sent him a few still images, including this one:
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| Seriously, world of Tron-weird, ain't it? |
Bonus, I was diagnosed with obstructive sleep apnea about three weeks ago. That is completely out of left field for me; I don't fit the type, and it just...showed up out of nowhere back in February or so when hubby first nudged me to tell me I wasn't breathing. I am getting a CPAP hopefully in the next week or so (son is dressing as Darth Vader for Halloween, but I get to BE Darth Vader! Oooh aaah, ooh aah...). Apparently, apnea of both types is extremely common in Chiari. The scarier type is central sleep apnea, where the compressed brain stem "forgets" to tell the body to breathe. Mine, obstructive, is thought in the case of Chiari to be because cranial nerves are compromised and the throat muscles relax more than they should, collapsing into the airway. Dr. B said that could in fact be one more piece of the Chiari puzzle...complicated little bastard, isn't it?
I am now a full time patient, and it sucks...but I still get out to the barn. I don't trust my body to be on Trilogy's back for now; my balance is wonky and my muscles are weak and numb, and the last thing I need is a fall. He wouldn't throw me, but that doesn't mean I couldn't wind up coming off of him. Until the dust settles, I'm staying off of him.
But I'll be damned if I'm giving up my barn time. Enter Firefly and harness-driving goodness:
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| "Waaaaiiittt...this is work, isn't it?" |
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| We all know who the biggest horse is in this arena |
Throughout all this, Trilogy has been worked in hand, and Firefly has begun working in earnest. It is so much easier on my body while remaining vital to my soul. What's additionally awesome is my kids can ride with me--each boy can sit on either side, and we go for a ride, blowing bubbles and chatting about anything and everything.
And now, I must sign off because--surprise surprise--my head hurts. But I promise to be back before, uh, another 10 months have passed. F'reals.
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| Happy trails are happier when there are treats involved |
