What the Doctor Said After Thirteen Months

Today was my final visit with my spine surgeon, thirteen months after my lumbar laminectomy last summer. I did my research and had my questions ready on the phone so I wouldn’t forget to ask anything important.

Biggest question – Is what I have now what I’m going to get post-op? Answer: Probably yes. He does not discount the power of prayer and continued hard physical work to see additional progress, but most of the improvement comes in the first year. I have good leg strength but my ankle has almost no improvement and there continues to be numbness, tingling, spasms, and pressure. That probably will not go away. He is very pleased with how much I progressed, which tells me that he may not have thought I could come this far, so I’m not complaining.

Will the stenosis come back? Answer: Not before 15-20 years if at all. My spine was very well cleaned out of compression and he doesn’t think it will be a problem. I do have some compression issues at other points (specifically S3) but have NO plans for any additional surgery, though I’ll monitor things to see if they change.

Should I plan to continue PT for the long term? Answer: No. It does the most good in the first 6-8 months, though help for specific functions (such as using the rollator) would warrant additional sessions. I must continue leg and arm exercises on my own, which I already figured out.

What about using a power chair? Answer: As long as I don’t overuse it, it should be helpful. But I cannot stop walking or I will lose the ability to do it. I should aim to use a rollator and manual wheelchair in my apartment, walk in the hallway for some longer distance practice, and reserve the power chair for longer distances to keep from straining and inflamming my arm and shoulder.

What kind of doctor should I be seeing for continued care? Answer: A physical medicine and rehabilitation specialist, usually found associated with pain management practices. But for the most part, I probably will not need to be managed. If my primary care or pain management doctors can’t figure out what I need, I could go to a specialist in my current pain management practice. Mostly I’m going now to manage SI joint pain with medication since I can’t have an injection due to blood thinners for the blood clot.

I like my surgeon and would recommend him, though I hope no one I know needs a spine surgeon anytime soon. I’m also glad to have graduated from his care. For now, I’m using my rented wheelchair until my Phoebe chair gets evaluated and fixed, hoping that will happen on site on Wednesday when the service guys come. There are things I don’t like about Phoebe but there are more things I don’t like about the rental chair and I want to get back to normal as soon as I can.

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.

Seven Month Post-op Update

Today was my seven month post-up visit with my spine surgeon. I got some answers, some good news, and some, well, sobering news.

Answers:

1. I got an order for 6 additional weeks of out patient therapy, three times a week, specifically to use e-stim again. I had that in out patient PT last fall but it’s not available in my home PT. I think stim helped a lot and I’ve noticed that the spasming-tingly feelings are way down. We’ll see if more stim wakes that up a bit.
   
2. He believes that the crippling burning pain that I experienced twice is not from a pinched nerve, because those areas of the spine were cleaned out in surgery. They were probably caused by SI joint problems (duh, I knew that). A 4-day tapered dose of Prednisone was appropriate and should be requested from my primary care doctor as soon as I am aware that things are happening again.
   
3. I should also make an appointment with my pain management doctor to discuss getting SI joint injections or at least additional pain meds.

Good News:

1. Knee strength in both legs was good.
2. He was pleased with the amount of walking I’m able to do.

Sobering News:

I should expect to have a wheelchair for a long time for at least some of my activities. I am not really surprised by this, given how bad my right foot still is at this point. And I’d rather have truth than platitudes.

Surgery 6-week follow up

My spine surgery was six weeks ago tomorrow; hard to imagine, really, that it’s been that long. I had a follow up appointment today with the surgeon and had smooth transportation to and from his office using the Meadow Lake van, which is equipped for wheelchair transport. I had a long list of questions for him that didn’t take that long to ask, really, but I felt that he listened and heard me, and answered what he could.

First, the small wound in my back isn’t bad and is superficial but it appears to be infected, so he put me on antibiotics for two weeks. Second, he is taking me off of Lyrica and Cymbalta which I started taking in the hospital. Neither of us thought I needed them, so I’ll taper off and then stop, which is fine with me. I don’t want to be taking meds just because someone put me on them. [And that reminds me that a doctor here, without talking with me or seeing any test results, decided to put me on liquid protein twice a day. It tastes foul and I’m refusing to take it, instead eating protein bars in my drawer that have twice as much protein.]

One of my biggest questions/concerns was bending. I can’t go home until I can put my shoes on myself, and I can’t do that until I can bend. The doctor told me I can start bending and twisting now as I can tolerate it, which should mean handling shoes and doing some bathroom cleanup that wasn’t possible before. I’m thrilled.

I also asked about the “heavy leg” sensation where my right foot feel as though it’s wrapped in a weight. Unfortunately, this seems to be related to the surgery and could last for quite a while. Full recovery for both the stenosis surgery and the conus swelling that’s causing the leg weakness will take 8 months to a year, and I need to be patient. There isn’t a road map as to what will come back first if at all; no two people are alike. So I just have to wait it out.

But he said I also need to be working to strengthen my muscles as much as I possibly can in the next months. I got the impression that could make a difference as to how much of a recovery I get. I’m doing therapy every day here, but when I go home, I need to keep that up and not limit myself to whatever days of additional formal therapy I get. The doctor was surprised, I think pleasantly so, when I told him that I was walking about 275 feet a day with breaks, and could swing my legs on and off bed, and he wanted me to continue with that progress. Me, too.

Life Threw Me a Curve

A lot has changed since last I wrote. I moved into my new home on Thursday, August 5th and was excited to begin my new life at Meadow Lake. I was already scheduled for spine surgery at Tuesday, August 24th and wanted to get my home organized and ready before that happened. The reason for the surgery was severe spinal stenosis, which was messing up my right foot and leg.

Then I fell. Again. Since November, I’ve fallen at least 8 times, which is 8 too many. I used the magic alert button to get help to get me up, but even I could see that I was weaker than I had been. And my left leg began to give me trouble, too. That was on Saturday, August 7th. Two days later I fell again, this time in the bathroom, when I let go of my walker and my legs collapsed under me. Not good. This time when I used the alert button, I had them call the EMTs to get me to the hospital. And before they arrived, I was giving instructions to help feed cats and collect charge cords and important things to shove into my purse.

I spent the day in the ER at UTHealth Tyler, which was like a circus. They did a CT scan of my head to be sure there wasn’t a brain bleed, since I hit my head in the fall. And x-rays of my back to be sure nothing had chipped off. When the doctors learned that I was scheduled for spine surgery, they arranged to talk with my surgeon, who also practices at the hospital. They did another back MRI and when I came out at 5:30pm, my surgeon was waiting to talk with me. It wasn’t safe for me to go home alone. And waiting for surgery 2 weeks later wasn’t advised, because hospitals were starting to cancel elective surgeries. The plan was to have the same spine surgery but moved up 2 weeks and at this hospital instead.

So I spent a few days in the hospital, able to get myself to the bedside commode using a walker, but finding that harder to do. Surgery went well and I ended up in ICU at 11:15pm on August 12th. Post-op I worked with someone from physical therapy but my legs were basically dead weight from the waist down. They did another back MRI which confirmed that surgery did what it was expected to do. And an MRI of my brain to be sure I hadn’t had a stroke, which I didn’t.

What the neurologists finally decided was that there were two different things going on. The stenosis surgery should help my right foot, but the nerves were so badly compressed that it will likely take 6-8 months. The muscle weakness is probably due to swelling in the conus area at the tail of the spinal cord – the spot that I kept reinjuring every time I fell on my butt, which I did a lot. It’s very unhappy and is going to take a lot of time to heal – if it does. Right now my best hope is that it gets a little better.

I moved to the Olympic Center Rehabilitation Facility at the UT Hospital on Tuesday, August 17th. My physical therapist explained when I asked that my condition is incomplete paraplegia. I have some limited control of my legs and the ability to pee and poop. Which are huge things. But it takes two people to get me out of bed now, or moved to a bedside commode or wheelchair. My upper body is strong and getting stronger. My lower body had a huge day on Saturday when I stood for 90 seconds, hanging on for dear life to the parallel bars while others helped hold me up. Success in very small things.

This is only the very first step in healing. I can only stay here 2 weeks, and then I will be off to somewhere else for longer-term care and rehab. I’m thinking that will probably be at Meadow Lake, since I’m a resident now and get priority access. The case manager will talk with me about what discharge means and what my options are, probably on Wednesday. I will leave here in a wheelchair.

And because this is going to take a lot of energy and work, I resigned from my job this week because I couldn’t figure out how to concentrate on healing and also do a job. Someone else can figure out bulletins and newsletters. I need to figure out how to stand.

I miss my cats. I miss my home. I miss the ability to throw off covers and walk. I miss having clean hair. I miss being independent.

I’m afraid and I’m grieving. And I’m also aware of how many small acts of kindness have been poured in my direction. People stepping up to care for my kitties. Friends unpacking boxes and moving things around so it will be easier for me to navigate when I can get back home. Friends shopping Walmart for comfortable loungewear and mini cans of Diet Pepsi. I can’t have visitors now – new Covid policy – but I so appreciate the texts, calls, and email. I’m alone. But I’m not.

More on this journey to come. I wanted to get down the details while I was still sure of what they were, especially timing. That I know I’ll forget as time passes.