“I don’t like the way that left ventricle looks.”

I had told them about my Spina Bifida, my hydrocephalus, the shunt in my head, and he decided to do a CT scan of the shunt. One of the two bigger ventricles look ever so slightly bigger. Given some of my other symptoms, it was decided I needed surgery.

The Shunt Surgery Saga is a story for another day, and will be its own blog entry one day; a blog entry filled with 2 emergency shunt surgeries in 6 weeks (surgeries I hadn’t had in 17 years!), ensuing anxiety and depression, more medical PTSD, and culminating in me joining the semicolon club because my brain is broken in more ways than one, and that year sucked.

Stay tuned for that story someday.

For now all you need to know is that the reason my shunt failure symptoms weren’t so extreme and painful was because, best the neurosurgeon can tell, the holes in the shunt –the holes that drain the CSF from the ventricles– plugged up slowly. Like, SLOOOOOOOOOOOWLY….. Like, years. “Maybe even a decade,” said the neurosurgeon. Years to reach the point of no return. It would plug up a little, my body adjusted. Plugged up a little more, my body adjusted a little more, and so on. So there was no extreme pain. There was no tell tale sign.

Hindsight being 20/20 tho, man. 😐🫤 Were there ever signs! The intermittent unexplained headaches. Literally called “intermittent shunt failure” where the shunt stops working for a bit for any number of reasons, then works again. The brain fog and other cognitive issues. Other symptoms that, again, best left for its own entry.

But here’s the thing guys! You guys… the surgery fixed my central sleep apnea!!

The frickin’ surgery fixed my frickin’ central sleep apnea. 😳😳😳

The explanation I got was that the slowly breaking shunt was, among other things, causing CSF (cerebrospinal fluid) to push part of the cerebellum down past where it needs to be, which by the way is what Arnold Chiari Malformation is in the first place! ACM is another thing that can happen to those of us with SB and hydrocephalus. (Check out #3 here for a quick lesson on Arnold Chiari Malformation)

And since the cerebellum affects autonomic reflexes (reflexes you don’t consciously control), like sleeping and breathing, he said that maybe when the shunt was breaking and pushing that part of my brain down, this caused and/or worsened central sleep apnea!!

And when you fix the shunt, you fix the central apnea!!

No more snoring, no more scaring the hell outta my wife by suddenly not breathing at night! Holy crap! No more gasping for air several times at night without even realizing it!

Cut to April 2021. Getting the 2 CoVid jabs, coming out of social isolation and that initial wave of the pandemic, and having broken my knee in the process. I gained 30 lbs. Mind you, I was never a thin adult. Add another 30 lbs and guess what, wife noticed I stopped breathing again!

Go back, do the sleep study, and have sleep apnea again. This time obstructive. Which as the link above said, has a different cause from central sleep apnea. This one tends to happen if you’re overweight or if your neck is over a certain size, regardless of overall weight. Both those reasons tend to close your throat and cause/exacerbate apnea.

So my knee heals after months of using a walker and doing PT. I start to eat better, I start to get more exercise. But I still get the CPAP machine. This time (thank god!!) it’s decided that my mouth actually stays closed during sleep so a full face mask is unnecessary. Just a nasal pillow. Much easier to get used to.

And let me tell you, coming up on 3 years using this thing, and 35 lbs lighter than I was back then, I sleep SO much better!!! F’real I could be a frickin’ spokesman for CPAP! My BP got better, my resting heart rate got better, my energy levels are better. Doc credits the CPAP more than the weight loss. The weight loss helps everything of course, she’ll be the first to say it. But given that I only lost enough weight that I’m back to the weight I was before the pandemic began, most of the credit she said goes to this machine that is, in her words, “preventing your heart from working it’s butt off every night, convinced that it’s dying 114x an hour (the new number with the new diagnosis of central apnea) every time you stop breathing!” She explained that my heart was too stressed every night. You’re not supposed to stop breathing every night. And your heart reacts accordingly when you do. Your BP gets all wonky, is never really stable, keeps going up. Your resting heart rate is never as low as it could be because it’s used to being so erratic at night when you stop breathing. Your lungs suffer because you might go on to develop pulmonary hypertension.

Everything about your heart and your blood pressure is so much better when your heart isn’t stressed trying to keep you breathing and alive every night!

So….how did my wife save my life? Well, sleep apnea can kill you in your sleep.

Undiagnosed or untreated, you can fall asleep with sleep apnea and never wake up. After years and years of apnea (or less time, if you’re already unhealthy to begin with or have other chronic conditions) your heart can just….stop. Just stop pumping. Just stop providing your lungs with the power to breathe. Your unpredictable blood pressure, your stressed out heart, your undiagnosed pulmonary hypertension…you just won’t wake up.

I suspect the comments will have some folks talking about people with Spina Bifida who just didn’t wake up one day, where undiagnosed sleep apnea was suspected but no autopsy was ever done. 😳

So. My baby my love my baby. Thank you for literally saving me from possibly dying in my sleep one day. Thank you for, “So hey, did you know that you stop breathing when you sleep?” mere days after our first nights together, oh so long ago. ❤️

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