Friday, January 4, 2008


Wanting to update this blog, I searched mentally for words to express how I've been feeling.

Aces! I feel like aces!

Know what I was doing when I came upon that thought? Um....sitting in the recliner after having taken a narcotic pain medication (but waiting for it to "take") and holding an iced gel pak firmly to the back of my head.

I guess it's true: everything IS relative!

I have been feeling quite well. I seem to have turned some sort of corner in my recovery from the tethered cord surgery. I feel freer in my back and hips. I cut back on caffeine and that helped a lot with the burning I experienced when I'd wake up in the middle of the night. My legs are still weak and my calves spasm a little bit. But I am not feeling that deep, central core type of pain and tingling from all the work done while sectioning my "filum."

But...I'm having more of the occipital pain, especially on the right side of the back of my skull. When it comes on, it is a strong ache in a localized area, which is punctuated by the occasional fiery streak of a stronger pain shooting down through the area already aching. I would never call this a headache. I don't know if others call this sort of pain a headache, but I never would. Not that I'm saying that it's worse than a headache, but the location is what keeps it from falling into that category.

I figure I'm like most folks. When you have a diagnosis and something is wrong and you have chronic pain, you wonder why exactly it hurts. I wonder why that hurts behind my skull like that. Oh, of course I know the general answers: my skull rotated backwards and rests upon the back of my C1. My C1 is non-fused with a big gap between the ends of the bones. I suffered internal decapitation and my skull fused in the wrong place. But...still I wonder why exactly this particular pain is sticking with me.

I am remembering again that Dr. M told me that I have an acquired "chiari" and that there might be some obstruction of flow. Does this cause this occipital pain?

It's really a rhetorical question because even the big neurosurgeons won't know until they open you up and then they still may not know. But it's still a question that bounces around within my grey matter. Until the pain med kicks in anyway.

But still, I'm doing aces! I really am. I'm still taking things VERY easy. I'm avoiding bending over and lifting. I'm following all the rules. I'm doing the log roll to get into and out of bed, and doing a similar version to get in and out of the truck. But I feel, once again, that the surgery was very successful and in another month or so, I'm gonna be better'n ACES!

I'd love to have a new MRI of my skull and Cspine and see that sagittal view and see if my brainstem and cerebellum have ascended any since the detethering/cord release. I don't know how long it takes for that benefit to show up, if it does. I know I'll get to have that MRI done and hear/see the results when I go for my follow-up in NY in a couple of months.

It rained all night and most of our snow is gone. Today was at least 50 degrees and a lot of sun. We drove downriver for a doctor appointment and the Columbia Gorge was, as ever, incredibly scenic. We were both overcome with a feeling of divine blessing. To have God's blessing over your life is a miraculous and wondrous thing, isn't it.

Next week, on the 7th, I'll go to the cancer center for my last pamidronate treatment (for now). Then, I'll schedule a bone density test and send the results to NY, and then, hopefully, schedule the surgery. With this pain in the back of my head, I know I need to go forward with the fusion. This will only get worse.

And I'm also feeling confident that the next surgery won't be near as bad as the last because, for one thing, I've been there and I know some of the routine. That's going to make a big difference for me. I'm feeling feisty and ready to take on the battle.

God bless you, gentle reader.

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