Monday, September 14, 2009

Ligament damage; describing central pain

I have so often notice (mostly every day) that my hands do not seem to belong to me.

I see my hands out in front of me getting a bowl from the cabinet, petting the dog, and there seems to be a "disconnect" between my brain and my upper appendages. Lying in bed at night, if I stop to think about where my hands are, without moving them, I really do not know. I might have my arm up, under my pillow, or down along my side. If I do not move my arm, then I do not really know for sure where my arms are.

I've noticed this while picking berries this fall, as well. Someone else's hands seem to snake out in front of me and start doing things! It's truly very strange!

While flying to New York in June, I watched the flight attendant reach up into a high cabinet for something, her arms and hands a graceful part of her body. And it reminded me strongly of how different the feeling is for me.

When I saw one of the neurosurgeons in NY (not the one I've seen for three years), though he had just met me and had not studied my imaging, though he had not done a personal neurological evaluation, he lashed out at me that I did not suffer any ligamentous injury when I broke my neck (thus defying the diagnosis of my main neurosurgeon at the time).

Such an experience left me very upset and defensive (this was only a small part of this surgeon's accusations), so I remember going back to the hotel and getting onto the internet and looking up cervical ligamentous injury. I was most surprised to see that one of the symptoms of damage to the cervical ligaments is this sensation that your hands and arms are not connected to the rest of your body!

In Jan. 2007, I was told (at The Chiari Institute) that I had "ripped, tore, ruptured, broke" ALL of my ligaments when I broke my neck. Of course, this made perfect sense because this explained why the C1 was allowed to spread and was not pulled back into place after the injury, why it has stayed "apart" and not healed.

I write this now just to record for myself this interesting finding. I have not heard from others I know on the internet that they suffer from this strange sensation (not to say that they don't), but found it very enlightening that this particular symptom is actually a symptom of ligament damage.

I'm going to try to find this information again on the net, and when I do, I'll post it here.
I've written here many times that I struggle to find the words to describe the pain and strange sensations I deal with every day from this injury. The other day, as I prepared to lean down to turn off the faucet outside that was watering the lawn, the familiar burn from deep inside of me started to come to the surface; the sweat popped out in beads on the back of my neck and scalp; my hair follicles became painful (piloerection); and I felt overcome with painful weakness.

And the thought came to mind: I'm in a microwave oven, sizzling from the inside out. I'm like that proverbial poodle of urban legend. Every day, several times a day, I'm being "nuked!"

The weakness in my hands and arms is progressing, and I made notes about some of the things I'm struggling with. Doorknobs, typing, opening jars, water faucets, pressing buttons, squeezing things with fingers. And writing. I noticed I now do not write the two "dots" that come between the hour and the minutes when you write down a note of "time." I do this time recording five to six times a day, when I take an oxycodone, and one of the things that has made this easier is to eliminate the two "dots." Is there a name for those dots? Ah, I remember: a colon!


When you are in therapy, you are always self-diagnosing. It's sort of funny. You wonder if what you say, even as you are defending your sanity, is the very thing that is causing the therapist to believe you are crazy. When you are having difficulty getting a physical diagnosis, getting doctors to pay attention that there is a physical and anatomical reason why you are hurting, you worry that anything you say to them or to therapists is giving them fodder to believe that you're nuts, and all of your symptoms come from that level of nuttiness you have.

I remember when I was in the midst of my six months of speech therapy immediately following my injury. I finally admitted to my ST something that I knew would cause her to believe I needed to be straight-jacketed and hauled to the State Hospital, do not pass Go, do not collect $200!

I told her, "I play about ten games of Spyder Solitaire on the computer every day."

She said, in obvious shock, "REALLY?"





"I play about fifteen games of Spyder a day!! What level are you at?" she cried.

I had to admit to her then that I was really downplaying my weakness and at the time, I was playing more like 20 games a day.

I guess it goes to show that the ones who sit in judgment of us are just as apt as we are to have their own stages of looniness!


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