Tuesday, March 3, 2015

Post Op Week 7: Opening up dirty windows and letting the sun illuminate my words, and world

Tomorrow marks seven weeks since that fateful surgery--I want to say life-changing, but not enough time has passed to know if its changed my entire life. It certainly has changed my life for the last seven weeks, however. 

(You may ask how I'm feeling. Well...it seems it is my turn with the virus that has gone through the house, so at the moment rather crappy. But it's the normal congested, scratchy throat, cough, low-grade fever type of crappy, so that's, uh, a good thing...kinda. You follow.) 

The other week, I was going through my downloaded photos from 2014, sorting them into folders and whatnot (hmm, reminds me, time to back things up again). As I revisited images from January to December and recalled the days behind them, I became increasingly aware of this slow, steady decline in my health as 2014 progressed. Images of my activities in March stunned me as they seemed completely impossible for my December self. Looking back over the whole of the year, I became aware there had been this slow, sucking quagmire that steadily dragged me down further and further as time progressed. Toward the end of the year, I wasn't living my life; I was slogging through it, enduring the days rather than enjoying. I fought to keep on top of the mire, seeking joy and hope and optimism, but in hindsight, I can see how through that battle I was nevertheless gradually sinking deeper. 

This is what I mean when I speak of the brightness I now feel—there is a mental energy, a drive, a motivation, a...*radiance* to my world that I’d forgotten about. Second to the loss of my headaches—and they remain completely gone—this is my favorite, most exciting post-surgical effect. I cannot describe it adequately, though I have repeatedly tried. The best I have come up with is my life before was like living life looking through filthy windows while wearing earplugs; now, suddenly the windows are crystal clear and the earplugs are removed. Life is BRIGHT and INTERESTING.

(The title of this blog post references Natasha Bedingfield's song Unwritten, which has been borderline anthemic for me in the last few years. Don't know it? Vaguely remember it from a nearly a decade ago? Do your day a favor and listen again to it and let those words soak into your skin. 

No matter where you are in your life, today is a blank page--where your book begins.The rest is still unwritten.)

Speaking of bright, after reading my surgical report I had a light bulb moment. The gradual decline (beyond just 2014) made sense. I’m not sure if my theory is correct, but I believe my health deteriorated as the decades-in-the forming adhesions continuously grew, gluing my cerebellar tonsils to my brain stem, my cervical spinal cord, and even the arteries in the area, gradually and eventually sealing the opening (foramen magnum) shut. My brain became increasingly deprived of CSF until it was starving for it, and the mechanisms in place to balance intercranial pressure became blocked by the long, lonnng term effects of cranial compression. 

What would have happened had I not had surgery? Obviously, it's all conjecture. Dr. Bolognese told me I would most likely either stay the same or get a little bit worse (in what ways, he didn't say, and it was a rare moment I didn't want to ask), so coming from an expert, that is the most likely scenario. I will say research has repeatedly shown long term CSF blockages can and often do result in hydrocephalus and/or cysts in the spinal cord (called a syrinx; the condition is called syringomelia) in Chiari patients. There have also been many reported deaths with the condition; two just in the last month in the largest online Chiari community to which I belong. I deliberately chose the word “with” the condition and not “because of”—their actual mechanism of death may involve the heart (as was the case with one 28yro Chiari community member) or the like, so it is not recorded as directly attributable to Chiari. There is astonishingly little professionally written about the connection between Chiari and death, particularly in adults, perhaps because its sometimes catastrophic effect on systems controlling breathing and heart rate result in those being listed as official cause of death. What is posted in community forums must be read with a skeptically raised eyebrow, but, there is no question death with and caused by this condition absolutely does, can, and has happened. (There is even an episode of Dr. G, Medical Examiner, highlighting the case of a child who died in his sleep due to a Chiari malformation that compressed his brain stem and silenced the autonomic command to breathe. His Chiari had actually been found in a previous MRI but was so dismissed by the neurologist--an incredibly common experience for Chiari patients--it wasn't even mentioned to his parents. They tragically learned of it postmortem.) I don’t mean to be dark and frightening or dramatic, but I also feel the need to stress how serious Chiari can be, and how misunderstanding/misdiagnosing/ mistreating it can be dangerous to outright deadly. 

But that isn’t me, and that isn’t my reality, and I am grateful.

This, however, is me, seven weeks post-op.  The scar is slowly fading as hair grows and the incision heals.

Is it weird I kinda want the scar to be more visible and less hidden?

Rather...interesting hair cut, hmm? Gonna be a bit longer before I can rest my head in a hairdresser's shampoo sink though.

I am also regular-annoying-cold-sick and quite tired now, so this will be it for now for this update. There’s more I do want to say, but the sofa beckons and I’m eager to answer its call. 

So, until next time—continued love, appreciation, and gratitude to you and yours.

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