Spinal cord injury and sensations

The spine is made up of sections and stacked vertebrae. The Cervical region (C1-C7) supports the neck. Below that is the Thoracic region (T1-T12) which is mid-back and protects the heart and lungs. Below that is the Lumbar region (L1-L5) in the lower back, which bears the weight of the body. Next is the Sacrum (S1-S5) which connects the spine and hip joints, and at the bottom is the Coccyx Region which provides attachment for ligaments and muscles of the pelvic floor. An injury to a section of the spine is referred to by the vertebrae level.

My surgery 10 months ago today was a lumbar laminectomy, sometimes called a “roto rooter” procedure, which cleaned out Levels T12 through S1 including the entire lumbar level. That’s a lot of sections, and when I tell people what was done, they are usually surprised by how much functionality I have. I’ve improved dramatically in terms of my ability to stand, walk, and function with activities of daily living. Something I haven’t talked much about (I don’t think) are the sensations I feel or don’t feel now. I don’t know which were caused by the severe spinal stenosis deadening nerves, or by the surgery, but it really doesn’t matter.

The ASIA Impairment Scale, developed by the American Spinal Cord Injury Association (ASIA), grades someone with a spinal cord injury (SCI) based on sensation levels and motor functions. It makes for a shorthand way to describe injury levels and set goals for therapy and improvement. The ASIA Scale includes a diagram showing the body divided up into zones which are connected to specific vertebrae sections of the spine. When the nerves are impinged or severed, the zone loses sensation and motor control, depending on the level of damage.

The other part of a spinal cord injury discussion is whether it is a complete or incomplete SCI. A complete SCI is any injury that fully severs the spinal cord at the injury site. People who suffer a complete SCI lose all feeling and function for anything connected to nerves below the injury site. An incomplete SCI only partially severs the nerves, allowing some signals to come through the area of injury. That person could retain some function and feeling.

The worst sections of my spine before surgery were L4-L5, with the nerves going to the right side of the body impinged more than the ones on the left side. These connect to my calves, ankles, and feet. Immediately post-op, I had a loss of feeling below the waist. I could move muscles – well, some of them – but without the ability to feel. Most of that went away after a few weeks and I can feel my waist, glutes, and most of my thighs. The left leg feels pretty normal except for the ankle and foot.

My SCI injury is incomplete; my ASIA scale level is probably a 3 or 4. My hip flexors don’t work much at all. My right ankle remains frozen, which is a functional issue, and the foot feels both numb and tingly all the time. Most of the time I feel as though I have a wad of toilet paper stuck in my butt. I don’t, but there’s a band of sensation almost like the circles of a target around the butt that are tied to the S3 section of the spine. That area has feeling but it’s weird.

My right big toe barely moves, which is sad. It was the first thing to go three years ago, when it went to sleep on a plane ride back from Boston and still hasn’t woken back up. All the toes are numb, and I’m afraid to cut my toenails for fear of cutting myself without knowing it. And my lower right leg feels as though it’s in a boot or cast or something from the arch almost up to my knee. I can’t rotate my ankle or even bend it much even though it feels as though I’m doing those things. Nothing moves. So the command isn’t making it from the brain to the muscles.

On the left side, not caused by spinal stenosis, I have meralgia paraesthetica in the outer thigh. The Mayo Clinic describes it as “a condition characterized by tingling, numbness and burning pain in the outer part of your thigh. The condition is caused by compression of the lateral femoral cutaneous nerve, which supplies sensation to your upper leg.” (https://www.mayoclinic.org/diseases-conditions/meralgia-paresthetica/symptoms-causes/syc-20355635#:). There is also decreased sensation and increased sensitivity to even the lightest touch. Yeah. It’s annoying and I find myself gently massaging the left thigh just to see if I can feel it.

I’m happy with the progress I’ve made with movement. I’m not happy with the sensation issues I still have. I don’t know if they will also change with time or if this is what I’ll have. Nerves are tricky things. They grow veeerry slowly if they regenerate at all. No one knows what will happen. “Just be patient” is what I hear from people who don’t have to worry about not feeling their feet.

And although I know it doesn’t do any good, I’m still kicking myself for not pushing harder to get my spinal stenosis treated earlier than I did, though I was working at losing enough weight to qualify for the surgery. I might have starved myself to qualify faster had I known this is where I would end up. But I didn’t and here I am.

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