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.

Look, Ma, No Brakes!

Okay, that’s not quite right. But the left brake on Phoebe is out of alignment and I can’t fix it. This adds to the damage done to the chair 10 days ago when it tangled with the bus wheelchair lift. I don’t know what happened, but it’s bad.

Wheelchair users lock brakes dozens of times a day. It’s how we stay safe when getting out of the chair to change positions, go to the bathroom, stand up to wash dishes or get a cup. I lock brakes when cleaning the litterbox or feeding the cats. Locking keeps me anchored in position instead of reaching down (or up) and having the chair go off in a different direction.

I can’t use a wheelchair with only one working brake. Fortunately for me, I have AFO’s and a walker and can use those to get around the apartment. But that requires me to keep them on all the time because I can’t go anywhere with the walker without the AFO’s – and I can’t put them on by myself unless I’m in the chair. Yeah, it’s complicated. Last night I slept in the lift chair, fully dressed and in AFO’s. That last wasn’t really an option under the circumstances but it made sleep almost impossible. My feet feel huge and walking is slower and more difficult today than yesterday.

Yesterday I called the emergency support number for NuMotion, the company that made my chair, but they can’t do anything until the local office opens this morning. I’m hoping they consider this as much of a problem as I do and escalate the repair call. Then I can take off the AFO’s, rub my sore feet, and crawl into bed for a nap.

My Wheelchair Haz a Hurt – or two

Phoebe the Wheelchair has a few problems stemming from our trip last Friday on the community bus to go to the Tyler Senior Expo. Understand, dear reader, that Phoebe rides on the bus and the van all the time. It’s how I get out and about. The van has a ramp; the bus has a lift that lowers from the back of the bus. I get rolled on backwards and lock my brakes before the small flap part rolls up and the lift moves me up to bus floor level, where I unlock brakes and get wheeled off the lift and into my wheelchair transport spot.

So I’m not sure what happened on Friday, doing something we’ve done a bunch of times over the last year.

But now the left front caster has a cut, which doesn’t look bad but may turn out to be bad later. I just don’t know. The right side first seemed to just have a problem with a brake very hard to lock – and this is the arm with the sore shoulder, so trust me, I’m aware of any worsening of the experience. And know that I lock brakes dozens of times a day. When I looked at the chair head on from the front, I realized that the solid silver bar on the brake, that is perfectly horizontal on the left side, is on a 35 degree angle on the right side. Not sure how this messes up the ability to lock the brake but apparently it is.

Plus there is a second set of brakes below the regular ones. I can flip them into position to make sure I don’t go backwards, say, on an incline. But after Friday, these extra little brakes just flip down on their own, stopping me in my tracks without notice or intent. Oops.

And on top of that, I was aware that the right wheel was harder to roll than the left one. Took me two days to figure it out, because I thought my arm was just sore, but no. And when I really looked, I saw that the big right wheel is actually angled so it’s farther from the chair on the bottom than at the top, while the left wheel is perfectly vertical. This wheel positioning could explain why the lock was out of whack. Or not. They might not be connected at all, just happening at the same time.

All I know is that it’s harder to propel and harder to lock brakes. I don’t want to do extra traveling around because all the extra work is on the sore arm.

Being me, I took pictures of all of these things, added circles and arrows, and sent them with an explanation of what was wrong to NuMotion, the wheelchair company. I am now waiting to hear from the service team about what fix is needed and when that will happen.

I can take the truth a year later

Last year on this date I moved from the Olympic Center to Meadow Lake Skilled Nursing for another 6.5 weeks of rehab before going home. I cried when they left me in my room. I pushed so hard those first three weeks after surgery and gained back the ability to stand up and walk very limited distances.

But that was really big. On my first day with her, I asked my Olympic Center physical therapist what was actually wrong with me. Doctors use big words and I didn’t really understand why I couldn’t stand up or make my legs work, and I knew that nurses and PT’s often tell you the truth in words you can understand.

Veronica told me that I was an Incomplete Parapalegic. That sounded really bad. But it also was very clear. “Incomplete” here means that I still have some motor and sensory function, which are Good Things.

Here’s the problem – a lumbar laminectomy (my surgery) cannot reverse the damage of spinal stenosis, which was going on in the lower leg for years. The nerves got more and more compressed which is why I started to lose sensation and movement in the right leg. When I finally had the surgery, it was two years after the stenosis was originally diagnosed, and it was already severe at that early point. I was falling a lot, but I was still able to walk around without assistance. We had every expectation that I would come out of the surgery with that same level of functioning.

But that’s not what happened. My legs collapsed under me two weeks before my scheduled surgery, and even though I had the same operation as originally planned, my functional ability was not the same as it had been before. I came out of it with uncooperative legs, not because of the surgery but because of the damage already done before I had it.

I’m not going to be able to give up a wheelchair and just walk around with a walker for long distances. And I’m not giving up to say that – I’m being realistic. And it’s okay. I can do this.

I talked with my current physical therapist this week about looking into power chairs as another mobility option for me, especially for longer distances here, because my shoulder keeps being inflammed from all the rolling I do. And instead of trying to disuade me, she agreed that it would be a good tool. She wouldn’t have said that if she didn’t believe it, and she wouldn’t have said it a year ago. Medicare already bought me a chair and they only cover one chair every five years, so a power chair would be completely self-pay. But it could be a really nice Christmas present to myself, don’t you think?

More PT Ahead

My right shoulder has been killing me. Isn’t it odd that all of the aches and pains and sprains and tingling – even the blood clot – are happening on the right side? Very lopsided. In any case, the physical therapist was here this morning to do an assessment of the shoulder/arm in response to a PT order from my doctor. He also assessed the ankle; the order for that came through when I sprained it, but was postponed when they found the blood clot. It’s been unstable so it got assessed and I get more PT.

There seems to be a nerve impingement as well as super tight muscles. Right side testing was considerably shortened from the normal left side, so PT will help. I got three stretching exercises to do in the morning and will go to PT twice a week for some indefinite time, because we’re also going to add in some work with the legs and walking. Chris was impressed with how much walking I’m doing on my own, so that feels good and as though I’m not slacking off somewhere. Pain needs to be heeded, and pushing the shoulder pain could result in other problems for me.

Also got instructions on how to shrink my giant abdominal hematomas and clarification of why I’m not to wear AFO’s on the NuStep. Wearing them supports the ankle but it can disguise any rubbing of the foot in the brace/shoe that could cause more problems. No one explained that before, or at least I don’t remember it, just that they didn’t want me wearing AFO’s on the machine. Got it. I think I need to reverse my shoe plans so the AFO’s go on first whether I think I’m walking or not, since they support the ankle. Mid-afternoon I’ll take them off and put on the zipper shoes to do the NuStep. Or not, if it’s not a NuStep day. I’ve been doing that backwards and I’m more likely to make myself go walking if the AFO’s are already on.

I’m not reluctant to walk. The problem is the cats, who want to go out in the hall with me when I go. I’m slower than someone not using a walker (or wheelchair), and they could easily get past me into the hall. So I try to plan my walks when they are flaked out asleep on the porch or in their boxes or other sleeping places. If they don’t cooperate, it makes things harder, and that’s when I wait and sometimes the walk just doesn’t happen. Life is like that.