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.

Standing isn’t so hard anymore

It’s no longer hard to stand up. I’ll bet you don’t hear that every day, do you? But I realized yesterday that I can stand up pretty much anywhere, without holding on to the walker or table, and that I’m no longer talking myself through the steps of how to do it: “scoot to the edge of the chair, line up the feet below the knees, tuck in the butt, suck in the tummy, lean forward, press down with the arms and move up on the count of 1-2-3.” Not doing that whole routine in my brain means that I’ve relearned the steps and they’ve become ingrained.

Back in August, this was such a very hard thing to learn and it remained hard to do for months. I had to rehearse the steps in my head, first dropping the count to 3, but still mentally checking off the other things. But the big thing is trust. You see, I didn’t trust that it would actually WORK and that I’d be able to stand up just because I wanted to.

I trust it now. And I stand up a lot, probably not as much as you do but certainly more than I did even a month ago. Each time it gets easier and I feel more normal. Sometimes I even forget that it used to be hard. Somehow this feels really big.

I Can’t Pretend Things Are Normal

New AFO & Old AFO

Even though I’ve been in a wheelchair, I’ve pretty much been pretending things were fine, just different. But that changed today when I picked up my new custom articulated AFO’s. Reality hit me like a ton of bricks.

They’re enormous. Well, they have to be, because I’m big and my legs are very wide. To make them, each leg was cast with fiberglass that was cut off and used to make a mold so the form was an exact fit, with some extra allowance for swelling. Today they were fitted to my leg, and the bottom part that goes completely under the toes was trimmed down; some of the side sections were also trimmed.

The sides of the AFO wrap around my leg instead of just having a small strip up the back with a wide but not that wide section at the top attached with Velcro. That’s the part that kept coming apart with Velcro falling to the ankle. The new AFO has Velcro around the calf but the distance is smaller and it’s riveted to the plastic so it should stay put. There’s another Velcro strip across the ankle to hold it in place. Instead of being one solid piece (the way the old one was, and the way a boot is), there’s one piece up the leg and another across the foot, attached with hinges. This will allow the ankle to bend. Well, the left one bends a little; the right one is still frozen but we’re hoping that will change.

I have no idea how I’m actually going to get these things on my legs myself, or how I’m going to get them into the shoes. I know it will work because I wore them home today, but the reality of it is something else. Of course, I had the other AFO’s for six months and was never able to put them on in shoes either. We’re hoping the hinge/articulation part will make a difference, but it’s going to take time.

Six Months Today

Six months ago today my legs gave out from under me and I went through the rabbit hole of spinal cord injury and recovery. My surgeon initially told me to give it 6-8 months to see how much functionality came back; that’s been pushed first to 8-12 months, and now 12-18. But still, 6 months is a big milestone. Being told I was an incomplete paraplegic sent me to Google to figure out what that actually meant, and it scared the hell out of me. But there was hope in it as well and I’ve gained perspective, advice, and inspiration from others with similar injuries as we share stories and tips from our recoveries.

My doctor told me at my first post-op visit to work as hard as I could in these first months after surgery to get as much functionality as possible, and I’ve tried to do just that. It’s not easy but no one said it would be, and if I need to give myself a rest day, I take one. From what I understand, patients with severe spinal stenosis can expect up to 80% restored functionality, but it’s a mystery which patients get more and which get less. Sometimes nerves regenerate and sometimes they don’t. I’ve been advised that I might not see any additional improvements in the next six months and should try not to be discouraged.

I never thought six months ago that I’d be able to do as much as I can now. I was depressed and mostly helpless, unable to even stand without help. But now I’m home with my beautiful kitties, in a place that accommodates my physical limits, supported by friends and family. My new normal keeps resetting as I regain abilities but I can’t do everything. That’s okay as long as I keep trying to do as much as I can, and to remember to give thanks for all that I have.

Where will I be in another six months? That’s pretty far out. I’m just taking one thing at a time. Next will be a new set of custom AFO’s that will be fitted on Friday. I’m also adding in extra walking at least four days a week, as well as working on the NuStep almost every day. Hopefully a new wheelchair will be in my future in the next few months. But in six months? Maybe I’ll be using a walker instead.

Let’s hope I can figure out how to put my shoes on with the new AFO’s. That would be a game changer.

Fitting for AFO’s

At last, at last, I went for a fitting for new custom AFO’s today, bringing with me my prescriptions from the foot doctor and his chart notes from our visit. The old ones are “off the shelf” rigid plastic things that I detest. The new ones will be rigid plastic things with a small hinge at the ankle to allow for articulation, an ankle velcro strap as well as the one around the calf (held on by brads, not Gorilla Glue that comes apart after two wearings), and padding around the foot that overlaps almost like a sock. She made a fiberglass cast of the legs to use for a custom fit. I’m not at all sure how this is going to fit into a shoe but the orthotist promised that it would work. It will take about a month to get the new AFO’s made and I go back for a fitting in early March.

One big concern here is the cost, but obviously I will pay whatever I need to pay to get these; the original AFO’s don’t fit at all, and I can’t walk safely without them. Medicare will pay for one set every 5 years. We don’t know if the coding used for the “off the shelf” original set is the same that they use for this custom set. If it’s different, then Medicare will pay for them. If not, then I will get a bill for $1800 each, less 40%. That’s a nice savings but it’s still pretty darn pricey. Good thing I’m not planning any vacations anytime soon. Also it explains my stress levels and chocolate cravings.

I’m HOPING that when the new AFO’s get here, I’ll be able to put them on myself, but that’s what I thought before and it didn’t happen. On the other hand, you may remember that months ago I bought a weird device that was touted as helping you put your shoes on with AFO’s. It didn’t work because my set didn’t have velcro around the ankles, which seemed to be what made it possible. The new set will have that and I’m hoping that means my nifty device will work and let me put them on by myself.

What I really need is someone to put my shoes and AFO’s on for me and watch me walk in the hallway, following me with the wheelchair in case I need to rest (which I usually do). I’m not going to fall down, but I can’t go very far without a rest. And then I’d like the AFO’s to come off and just the shoes to go back on so I can go about the rest of my day with the wheelchair. At some point I’ll be able to do more walking and can keep the AFO’s on longer, but I’m not there. I’m not exactly sure where how I go about finding someone to do this for me most days, but have a plan to try.

Reading between the lines of my conversation with the orthotist today, I think an AFO will be part of my life for a long time, at least for the right foot which is still inflexible and feels spongey. I’m hoping the left one will spring back to where it was before, but there are no guarantees about that either. I wish I better understood what the surgeon thinks is likely as the final outcome of the laminectomy; all I do know is that it will take at least 12 months or more, and that I probably won’t get all my function back. Nerves heal very slowly and there will be some permanent damage from severely compressed nerves.

I just don’t know what it will look like in a year and that’s hard because I can’t plan and I like to plan. Do I want to walk instead of ride around in a chair? Of course. Where I am now is a far cry from where I was five months ago and in many ways, if this is where I finally end up, I can live with it because I’ll know those are the limits. I wasn’t sure that I’d be able to come home at all, to live independently, or care for my kitties, and I can do all of that. Is it enough? No. But I’m really worn down by having to fight so hard to figure out what I need and how to get it. And I’m tired, and I hurt today. Please send hugs.