Since Sept 10, 2007, I have been blogging here. A lot of water has passed under the proverbial bridge since then, and yet, so many things are much the same.
Back on Oct. 2, 2007, I wrote of being drawn into a painful sleep almost daily, but especially while in the car or pickup. http://jeffersonfracture.blogspot.com/2007/10/forced-down-dark-hallway.html
When I blogged about it, it surely wasn't the first time I'd experienced it. In fact, I've probably been dealing with this for a three years or more. However, lately, it happens much more often.
A couple of months ago, my husband and I decided to go see a movie called "Appaloosa." It looked to be a good, ol' cowboy flick, and we hadn't been to the movies in a couple of years. We were looking forward to it.
Before the start of the movie, we were at a discount store and, walking in, I noticed a display of windchimes up and to my right. I wondered if they were on sale, and if so, for how much, so I carefully looked up...and to the right...and I felt a stab of pain on that side at the skull base, and heard a clunk. I continued to feel pain in the occipital area, but didn't allow myself to worry about it, or it to ruin the day.
I took a little pillow into the theater with me, watched a few movie trailers on the screen, and the next thing that I knew, everyone around me was getting up from their seats. The movie was over. I was confused and it was still dark, and I fumbled around for my pillow and wondering what happened.
I remember nothing about that movie! And I never once saw an Appaloosa.
Since that day, I've wondered often what happened. I know I sort of passed out-slept. But what happened in my neck to cause a 2 hour event of it?
And since then, I've found this happening more and more. And also, pain in new, rather significant areas: underneath and a bit behind both of my ears. I know this is the bottom edge of the skull, and I am wondering if I experienced more cranial settling.
Functional Cranial Settling. I have it, and according to my neurosurgeon, it's severe. I didn't get to talk to him about it much, and I have a lot of questions. But it stands to reason that just a very small amount of settling can have impact. Millimeters.
When the skull settles, the odontoid bone of the C2 which points up into the skull through the foramen magnum HAS to go up further. Skull down; odontoid bone of the spine up. It's not rocket science.
The odontoid bone, when it is up where it should not be, compresses against the brainstem, especially when one bends their head forward or backward.
My surgeon told me also that I have brainstem compression "from where the brainstem goes through the C1."
My muddied brain has thought a lot about these painful passing out/sleeps. Naturally I would, they happen every day. I've wondered if they could be seizures but that just hasn't seemed right. Is it cranial nerve compression? Or one of the thousands of things I know nothing about. How I wish I could ask.
However, the other day, it all seemed to come together for me. It's deprivation of oxygen.
My O2 levels are falling because I'm not breathing regularly and when I do, it is shallow. I also find myself holding my breath unwittingly and often.
Time goes on and the deprivation builds up until I rest my head back against a seat, or the recliner in the living room, or the shell protecting the back of my head in the CTO. Perhaps the relaxation of suddenly being supported factors in (which is what Dr. B has said) as well.
But the lack of O2 really explains the way my brain feels. It burns in the temporal lobes, my eyes refuse to focus. One time I had this while sitting at the computer, and my vision started to darken from the outsides going in. Then I had a brown-out in my vision. Which woke me up and I started to breathe more deeply.
Yesterday, we drove to our shopping town, I wore the CTO, and I focused on breathing deeply. I didn't have the passing out thing. However, the position the CTO puts me in causes deep aching pain in my palms and in the soles of my feet and then it just spreads out, making me very weak, and I did arrive home with that.
So...I think I'm onto something here. I need to think more about breathing and breathing deeply. Right after my injury, I had a wonderful speech therapist train me for six months and she taught me diaphragmatic breathing, and I can do that too.
When I've felt it the last couple of mornings, I've forced myself up and walking around and breathing, breathing. It takes quite a while to feel less weak and wobbly, but it does help and also evades the passing out.
And this all might explain why my balance has been much more "off" of late, as well.
This also explain memory problems.
Some might read this and wonder, "Get thee to the ER! What are you doing not at the hospital?" But other readers will relate to what I write, when I say it's hopeless. There's only one place for me to get answers and it is 3000 miles away.
Doctors in emergency rooms do not know what to do with people like me. They would take O2 levels and say I was fine. I would be wishing I'd never gone. I'd be wishing I could get off the table and run home and say it never happened.
I am seeing a new neurosurgeon on Wednesday. God will show me why I need to go. Because I don't want to go. As I've written before, I already have a perfectly good NS, but my hematologist/oncologist wants me to see someone for a second opinion on whether I am ready for surgery or not. I do not believe that any neurosurgeon but the one I see in NY could look at MRIs and say, "Your head is falling off! You need a fusion and you need it now!"
One gets an attitude like that when they have seen other neurosurgeons and been mistreated by them. Neurologists? I give them no respect whatsoever. That is so sad, but for me, it's true. I haven't visited with a NL yet who did me any good. My friend, One Sick Mother, keeps a tab on how many doctors she's seen and she calls them by number. I don't know how many docs I've seen, but only one "got it right."
Maybe seeing this new NS will be good for me in that he can document my decline. But most NS I know, if you are not having surgery, they don't want to see you. Which leads me back to a NL again.
Some of my readers know this spin cycle well.