Just before the procedure on Thursday, my neurosurgeon popped into the hallway where I was waiting on my gurney, to speak with my mom and me. He was there to do my blood patch, but he also had the elusive myelogram results we hadn’t been able to get in the entire week of post lumbar puncture hell.

Shock of shocks, no leaks showed up on the myelogram. I wasn’t surprised, nor disappointed. I’d like to pretend it’s because I’ve leveled myself out emotionally, but I’m pretty sure it was because I was in the throws of FREAKING OUT about the unexpected anesthesia. I am full of sound logic and sanity.

But the neurosurgeon did mention that my pressure was low. Low low. Obviously-not-normal low.

I’m-not-crazy low.

He said that a pressure that low could be one of two things.

It could be either one or several very small csf leaks that didn’t show up on the myelogram.

or

My body simply isn’t producing enough csf.

And there’s not a great scientific test to know which one it is. Which is frustrating. His hope is that the high volume blood patch he did would seal any leaks that might exist that didn’t show up. That’s why he was so set on putting in so much blood even though it hurt (and holy crap, continues to hurt) like hell.

And so now we wait. Which, in case you didn’t know is pretty much my favorite thing ever.

I just love waiting.

I honestly don’t know if the headache is better or not yet. Because I’ve spent so much time in the past 3 days going, wait, does my head hurt? Does it hurt like it did this week? Does it hurt like normal? Is it better?

And the only conclusion that I’ve come up with so far is that I need to stop obsessing about it and give myself some time to settle in. If the normal, almost 6 month old headache gets better, it was a leak. If it doesn’t, it’s probably that my body isn’t producing enough spinal fluid. Not scientific, but logical.

And though I want answers, I need a break. I can’t keep doing this, I can’t manage a life peppered by medical tests and side effects.

In the past week I have experienced pain that I never even imagined could exist. I haven’t been sleeping much because many of my dreams take me back to the horror of the failed blood patch Monday or the two hours of hell at the doctor Wednesday. Sleeping seems to allow me to let down my guard just enough to remember and realize how much that pain paralyzed and petrified me this week. How much it wore down my sanity. How much it hurt more than just my head.

Life is slowly returning to some semblance of normal. Or, rather, I should say “normal” because I don’t know if we’ll ever get that back. And maybe that’s okay.

And now we wait. And worry.

And hopefully, move on.

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