Myelomalacia

So after my wonderful trip to the Emerald City, I was finally granted the MRI from the Insurance companies.

For the first time they actually had to redo a set of images as the myoclonus even in its tamest tends to give me trembles. While I wasn’t expecting the worst, I knew it was the best. Sure enough C3/C4 finally went from bulge a year ago to blown. Something I expected… just not this soon. What was worse is the damage got its label as a myelomalacia at C6 – and by all accounts it not good – it’s essentially a piece of cord that’s essentially short circuiting constantly on hyper drive.

This explains my extreme fatigue and pain I wouldn’t wish on my worst enemy (not that I’d have one anyways, just not my cup of tea), the myoclonus jerks and trembling hands that reminds me of my ex husbands late great aunts bout with Parkinson’s, my bladder issues, all of my clumsiness and inability to walk unassisted by a cane to keep the stability and prevent as many falls as I can.

Although the wizard remains optimistic as it hasn’t spread, story is not progressive as of yet, and hopefully it will remain that way, as it’s kept in the back of my head that myelomalcias can ascend upwards, so in essence once it hits C3/C4 it will paralyze my diaphragm and I will be unable to breathe on my own. While no new compressions, c3/c4 herniation is touching the outside sac that the spinal cord resides in, as well in part of my fusion.

So essentially squeaking by the neurosurgeons table for now. Both the neurologist and the spinal pain management doctor recommended to go see the neurosurgeon, which I’m really not inclined to do until we get closer to that, just yet anyway. If there isn’t compression he won’t want to operate and I’m not going to waste that talented mans time who is well known in the neurosurgeon community here, in Chicagoland.

But it would be wrong to admit that the fact C3/C4 has finally blown and is still quite possible to compress the spinal cord is not exactly giving me the warm fuzzy feeling. I keep thinking stable is good. I can live with a stable myelomalcia, and I can live with additional fusions if and when the time comes.

Until that day I will continue to go to my various physical therapy, my counseling to keep my head on straight, along with my meditation that I’ve been slacking on, sticking to a strict medication schedule (Currently managing 11 prescriptions as of today) and while I’m sure I will fall short of all my New Years goals due to set back after set back, I’m still hoping to finish a quilt, a craft that I had just started to getting into before the house landed in Oz.

That is my hope. And hope is all I have that can’t be taken away, even though its simply not possible to have some days that it feels horribly hopeless being trapped in a body that you no longer have full control of, but I will continue to wrestle those days as they come along.

I found this on YouTube and if you’re interested on learning more, take a peek at this quick video.

Feel My Pain – Myelomalacia

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