Background

I had spinal surgery about 2.5 years ago now, I’ve been kinda muddling through with my current work ergonomics solution since then and trying to put my focus at rebuilding the muscles that were preventing me from really sitting/standing at my desk. COVID threw off some of my PT routines and in-person appointments so I focused on other things and the pain was reduced. Now I’m restarting PT in earnest and all the pain has really come back so I think I need to optimize my setup for where I am currently at rather than where I hope to be.

The root issue with my body is leg and back pain. I start most days at a 3 or 4 on the 0-10 pain scale, and am at a 5 or 6 by the end of the day. At a 6 I can’t focus any more. A 5 I can work mostly through – and work is wonderfully distracting. Sometimes the pain is in my lower back, but mostly it is burning nerve pain in my feet/legs plus spasticity (legs jumping/twitching involuntarily). Any soreness gets translated by my nervous system into burning , and PT ramps up the soreness. I could increase my pain meds, but they tend to make me more tired, and I spent four miserable months last year trying to reduce them.

What I’ve been doing

Here is what my setup has been for over a year:

• In the morning I work from an old lazy-boy chair so that I can stay reclined. My abs are too weak and difficult to engage to hold me up for long, so when I sit up I naturally end up slumping which eventually puts my back in lots of pain. The chair is pretty terrible, but I’ve tried many other solutions and nothing has been as good. I add some extra lumbar support and that does help. Reclining and raising my legs up is very helpful for blood flow to my legs. But the leg rest is maybe not great. Getting in and out of the chair to stretch and move is also not super easy.
• Usually by early afternoon I am no longer comfortable in that chair, particularly the pain in my legs has ramped up so I move to sitting sideways on a hard sofa where I can have my legs straight out and the pressure of my legs evenly distributed. My legs being flat reduces the leg nerve pain, but sitting up on the couch (I’ve tried lots of different back support solutions) is pretty rough on my back.
• For both of these positions I’ve been just using my laptop in my lap. Terrible ergonomics on my arms/shoulders/neck, but the pain from that is minor in comparison.

Known issues:

• Stretching my legs out straight helps a lot. Presumably better blood flow and nerve signal.
• Single point of contact on my legs when having them raised is probably causing more pain. I can’t really feel the pressure, but I think it is a problem.
• Leaning back is better. I’ve tried a couple of rounds and variations on transitioning back to my sit/stand desk (good chair and desk) and every time it has just been worse and completely unsustainable. Ideal would be completely flat. Discussed this with my PT today and he really agrees.
• Moving my legs around to different positions is helpful, but tough to do with a laptop on me all the time where I am also trying to optimize reaching the keyboard and seeing the screen.

Prototyping a new solution

I’ve been iterating a bit on my setup this week and completely moved all the furniture around my office to try prototyping a new solution.

My current prototype:

• Use the lazy-boy chair so I can recline.
• Put a big sofa pillow on the leg rest of the chair so that my leg weight is better distributed. Also raises my legs up another six inches.
• Sitting next to my sit/stand desk with an Ergotron monitor arm so I can have the big monitor kinda tilted down at me and easy to reposition.
• I have a cutting board on my lap with my mouse and keyboard on it. Resting it on the arm rests is too high.
• Using an inflatable airplane pillow as a headrest when I want to lean back farther and angle my head at the monitor.

Results of current prototype:

• I do seem to be able to sit in this setup for a lot longer and with a lot less pain. Got through the whole day today and my pain never quite got above a five. I’m still sitting here at 7pm. Also, all day long this felt like the best solution I have.
• I can’t recline back quite as far as I would like and the lazy-boy doesn’t transition to every angle.
• The monitor only tilts down 5-10 degrees so is at a bad angle when I recline all the way back.
• My headrest solution for reclining back farther has my neck bent too much.
• The keyboard on my lap is not at the right angle. The arms of the chair are kinda in the way so my arms are up too high also. Feeling some pain in my arms from resting on the armrests in odd ways.
• The chair back is not great support. I can definitely feel some back pain.
• The seat is a bit deep even when I am fully reclined. Probably just too old and sinks too much. My PT found my psoas (hip) muscles to be super tight from sitting like this which is why he suggests flat (or fixing everything else, but I’ve been working with him for years on everything else and we aren’t there yet).
• My feet hang off the end of the chair and I think that starts to add extra pressure on my calves that eventually results in nerve pain. Alternating crossing my ankles kinda helps a bit, but there is definitely some nerve pain in my feet at times and I think this is why.
• Getting in and out of the chair is tough. I can’t really put down the foot rest without needing to rebuild a lot. The monitor is easy to push out of the way, but getting up to the side requires going over the arm of the chair. The chair is also kinda low to the ground in general. It definitely makes me want to get up less as I worry about pulling a muscle or falling as I do it.

Potential Solutions

All the solutions I have found are quite expensive ($4,000-$8,000). I really don’t want to buy the wrong thing though they do all seem to have 30 day return policies. I have tried looking for some mid-range solution, but I don’t think there are any. These high-end solutions only seem to sell 75-100 per year so I think the market is just not big enough. I’ve only really found these two companies so far.

1. Altwork Signature: Expensive space chair. All the pieces of the chair move with electric motors which makes it easy to adjust and position while you are in position. The monitor and keyboard move with you as you change position which makes it easier to actually change during the day. Optimized for ergonomics in any sitting/reclining/laying position. Also supports standing which I would like to get back to doing at some point (though I do have this nice standing desk Automattic bought me a few years back that I loved while I could use it).
2. Altwork Flex: Slightly cheaper option. Manual adjustment of the leg rests, monitor, keyboard. No standing. Maybe tougher to get in and out of also.
3. Ergoquest Zero Gravity Chair 3. Cheaper, but not cheap. The headrest is really a pillow, and it has much less adjustability for the legs. Does go completely flat and is all controlled by electric motors. I’d probably pair this with this Ergotron monitor arm that can tilt through a full 180 degrees up and down. Haven’t chosen a keyboard tray yet. I’d probably attach all this to my sit/stand desk which would let me further adjust the height. Then if I can transition to trying standing again in the future I could move to that desk though I don’t see how I would do a gradual transition.
4. Ergoquest Zero Gravity Chair 1. The “cheap” option at $2800. The problem is it doesn’t go fully flat, and has a fixed 120 degree seat angle.

Any other ideas? Anything else anyone has tried or heard of?

BOOM!

Apparently I started my trial project at Automattic ten years ago today. Ten year Automatticversary is on July 18th. Still a great place to work. Also this has happened in the meantime.

You started on 2011-07-18. Of the 1,469 other a12s, 49 (3.3%) started before and 1,420 (96.7%) after you.

1. Mostly no knee braces! After a visit to Craig Hospital to re-eval my rehab convinced me, I stopped using my knee braces. This set back my walking a lot since I went from being able to walk 25-30 minutes five days a week back to only walking about 5-10 minutes, but over the course of the year I’ve worked back up to the 25-30 minute range. And of course, when I do use my knee braces now I can go for an actual hike (followed by 4-5 days of pain). Some good progress.
2. My other PT exercises ended up being sporadic. I started the year consistently doing some swimming mixed with a good amount of muscle strengthening. Craig refocused me on certain weak muscles, but all the other changes I made got in the way of working on them consistently. The times I did focus on them for a week or two I would end up so weak that I was almost falling down and could hardly walk. So still a ways to go here.

3. Less medication! I started the year on four medications and have reduced that to two. Two of my main medications were reducing pain and the risk of falling, but they were relaxing my muscles and nervous system which resulted in weakness and made it harder to recover from my exercise. In general, I’m in less pain than I was a year ago, and have fewer side effects to deal with.
4. Sleep! It is really tough to sleep when you are constantly in pain and twitching. My sleep got very messed up over the past four years, and poor sleep makes it a lot harder to do rehab. I spent about two months in 2020 focused on resetting my sleep schedule. It was really hard, but it really worked.

Forward to 2021

Predictions are tough and probably not worthwhile, but I guess I have some guesses of where things will go.

1. Losing weight. I’ve gained 20-25 pounds since 2017. Besides being less healthy, it also makes it harder to move since I have more weight for my muscles to move around. Likely it also is affecting my sleep. Since cognitive behavioral therapy works so well for me with sleep, I decided to dive in and try Noom.
2. Reduce medications some more. I don’t plan to change nearly as much as I did in 2020, but hopefully I can reduce them a bit further. It seems to take 3-4 weeks for each change I make, so it is fairly time consuming.
3. Regularize my PT. I’d really like to actually fill in the calendar of regular PT exercise with Xs this year. I want to find the right balance at improving my weakest muscles without wrecking my body along the way.

In the end we walked for about 80 minutes total with a break in the middle to have a snack up at a bridge that didn’t exist the last time I hiked this trail. About 2.4 miles and 480 foot elevation gain. It was a beautiful day, a bit windy, but nice and sunny. I used my knee braces for the first time in about nine months (used to use them every day), and used my hiking poles on the way down.

It was really great seeing the kids hiking. Connor (2) did quite a bit of walking, but Mekayla also did a lot of carrying. Morgan (5 ½) hiked the whole thing though and kept up really well. On the way down, Mekayla, with Connor on her back, circled around on some other trails to get a couple extra miles in and go back to our house. Morgan kept me company on the way back to the car. It was great and I had a great little hiking buddy.

So now I’m settled in on the couch for the 24-48 hours of nerve pain I am anticipating from so much exercise. I started the day at a two (out of ten), and am now at a five. The big question is if I’ll be able to fall asleep tonight. I had been at a mostly-maximum dosage of my neuro-pain med at night and I finally decreased it last week. So potentially I could boost the dosage tonight to help me sleep. We’ll see.

A big part of it – the toughest part – is the sleep restriction therapy. Essentially it is:

1. Take the average hours I was asleep (Dreem chose 6.5 hours) and limit myself to never sleep more than that.
2. Don’t get in bed until after a specific time (12:30AM).
3. Get up at a specific time (7AM) and never before then.
4. Never sleep past 7AM.
5. If I spend more than 20 minutes awake in bed, then get out of bed to go relax somewhere else till I am about to fall asleep.
6. After my 7-day average sleep efficiency is over 90% go to sleep I get to move up my bed time in 30 min increments.

The goal is to get rid of the ups and downs in my sleeping, increase efficiency, and consistency.

It has been incredibly exhausting. Every night for the past two weeks I have been so tired before my bedtime that I can’t even read anymore. I just sit on the couch trying not to fall asleep. But my sleep is not bouncing all over the place anymore:

The first two weeks my average sleep efficiency (time asleep divided by time trying to sleep) was 70%. It also varied a lot from 0% to 96%. Over the past two weeks it has averaged 89% and varied from 84% to 92%. Due to the sleep restrictions I’m still getting slightly less sleep than I had been on average, but currently I am on a 12AM to 7AM schedule, and hoping I get to shift to 11:30PM to 7AM this week.

The slow increase in hours I can sleep should also help me identify how much sleep I actually need. I’m trying to continue to do my rehab at a consistent level so that I can properly gauge how much sleep my body needs while doing rehab.

Shooting for 90% efficiency leaves surprisingly little time to fall asleep and for any awakenings at night.

A nice thing about going to sleep so late is that I actually have more time in my day. I’m exhausted during that time, but I do get more time for reading. Currently alternating between the second Mistborn book and a history of the fall of the Roman Empire. Books for work seem to do too good of a job keeping me awake unfortunately.

Despite the exhaustion, this is still way less miserable than when I was experimenting with my medication earlier in the year.

About two weeks ago I decided to buy a consumer grade brain-wave sleep tracker: Dreem. It is fairly pricey, $500 (you can get 10% off with my code: SOOSEKOIS).

Two weeks of data

I’ve been tracking with both for the past 10 days. Here is a comparison of what each is telling me.

(*) In too much pain to fall asleep. Eventually fell asleep at 2AM and woke up at 5:30, but pulled off the Dreem headband apparently.

Not surprising given the sensors involved, but Dreem is pretty hands down more accurate. I am certainly not at all normal though since my muscles involuntarily twitch due to the spinal cord damage. But having more accurate tracking certainly feels better since I try and use this data to adjust how I am doing my rehab.

CBT-I

Possibly the more interesting aspect is that Dreem walks you through a cognitive behavioral therapy for insomnia routine for trying to correct sleep problems. I’ve only just started. I am exhausted from it, but I do feel like I have had fewer problems falling asleep and waking up at the right times. So I guess it may be working at resetting my sleep rhythms.

The App

The only real disappointing part is that the app is not particularly good for long term tracking.

Dreem just doesn’t use the space on the screen well for visualizing the data. There are a few places where you can graph individual results, but it isn’t great for analyzing. They both let me export the data at least.

Anyways, the data from Dreem is too good to not keep going with it, and I currently am fairly hopeful that the CBT-I over the next 6 weeks will pay off. It lines up with some of the things that sleep doctors have had me try also.

March 1st – My starting point

• 3mg Tizanidine at night
  • Prevents leg spasms, twitching, spasticity.
  • Before starting this in 2017 I was almost falling down multiple times a week due to my legs twitching randomly while walking.
  • Makes me super tired, and makes my muscles weaker.
  • Changes to this drug badly screw up my sleep and make my legs twitch. I’ve fallen down in the past soon after making changes.
  • At one point was up to 6mg. Made me so weak that I could hardly walk up a flight of stairs. Couldn’t really stand up on my toes at all.
  • Goal: get off this entirely.
• 1200mg Gabapentin at night
  • Makes me tired and sleepy.
  • Lots of extra pain and twitching when I change it. Also causes insomnia, dizziness, and depression.
  • Controls nerve pain for a period of time. Somewhat helps spasticity.
  • I’m on the highest dose I’ve been on. Tried stopping in mid-2019 when I hoped I could just use Tizanidine. Did not go well.
  • Goal: just rely on this for pain and spasticity. Spread it out across the day to better manage pain.
• 30mg Cymbalta in morning
  • anti-depressant and can also help with nerve pain.
  • unlike Gabapentin, it definitely doesn’t make me sleepy.
  • In 2018 when I started it I had two months of terrible stomach problems and muscle problems.
  • Goal: Last resort is to increase this if the Gabapentin makes me too tired during the day.
• Vitamins: quite a few all at night
• Melatonin: 6mg slow release at night to try and keep me from waking up.
• Pain on a 1-10 scale: starts at a 4 every day. Almost always a 6 by 2PM at which point I could hardly focus on anything. Most nights also in pain and it got in the way of falling asleep.
• Sleep: averaging 5.75 hours a night. Often alternating between 2-3 hrs and 10 hrs.

Experiments

Ideally, make a small change, wait three weeks to evaluate and then make the next one.

Experimenting with meds is so non-linear. You can’t really A/B test it because everything is always changing. What I assume was vitamin D toxicity would have hit me hard then either way, but it was very confusing.

Where I’m at

• I cut out a drug: Tizanidine. Yay!
• In March I also stopped using knee braces which is a big deal.
• Completely stopped vitamins. Seems not great
• I moved around Gabapentin.
• 8 days in July where my pain started at a 3.
• 16 days in July where the pain maxed out at a 5 rather than a 6.
• Definitely super tired, but my sleep schedule is getting a bit better.
• PT has restarted and is kicking my butt again. So sore. Terrible balance and tough to do my 10 minute walk the past two days because I overdid PT.

Now on to trying to fix my awful sleep patterns. After discussing the efficacy of my watch tracking with my sleep doc, I decided to go crazy and buy one of these. That’s a different blog post though…

Starting in September of last year I began exercising them with this simple “respiratory muscle trainer”: The Breather.

When I told my PT I had bought one of these he said I was the first patient who ever actually asked about them. He often recommends these sorts of devices to his patients who are pro athletes who need to work on their breathing. His recommendation of how to use it was pretty different from the directions:

• 30 breaths – fairly fast – less than one second apart
• Twice a day
• Stick with one setting until it is easy and then ramp it up

It takes me less than two minutes a day and it may have been one of the best exercises I started doing. I began on the lowest setting (1 on inhale and 1 on exhale) and couldn’t even do 30 breaths without stopping. It has now been 6 months and just yesterday I cranked it up to the highest setting (6 inhale and 5 exhale). I have no idea how much this will help if and when I get COVID-19, but I can definitely feel the improvement in my lungs when swimming.

There is also a pro version (The Breather Fit) which I guess I may get once this version is too easy. They seem to have raised their prices though and there are a number of other competitors.

One of the top Amazon reviews for The Martian is exclaiming how great a movie it is for watching and re-watching during cancer treatment. I find the same thing for surgery recovery and spinal cord rehab. Beyond it being a well done movie and story, I think there are a number of things that make it great for rehab:

• First of all, the movie does a great job of conveying the stress and difficulty of slowly dealing with a problem. It takes place over the course of years with moments of excitement mixed in. I’m approaching the end of the second year where I knew something was wrong with my nervous system, and I’m expecting to be working on rehab for another year or two. Every day requires making lots of small steps in the right direction, but there is also a lot of waiting around (in pain) after taking my daily steps. Waiting for the next day to take one more step and trying to not go too fast and slide backwards. Trying to stay on task, but then also needing to re-evaluate and adjust my plan.
• There are a few points in the movie where the main character has a major setback and kinda gives in to depression and being a wreck for a bit of time. It normalizes that sometimes the right decision is to sit on the couch and give in to doing nothing. Wait for the pain to dissipate. Wait for a point where you can logically process and figure out the next step. Wait another week to gather more data and not immediately second guess everything.
• Then you get back up again. Start over again. Analyze what went wrong. Look at the data you have about yourself and your situation, and try the next thing. Iterate.
• Lastly the movie does a great job of portraying loneliness. Even when lots of people are helping you and lots of people care, you are still really alone. In the end it is always your life, and you are always alone with it. You are still needing to figure out the details and second guess your choices. You make the final decisions and live with the consequences.

The movie ends optimistically with a pretty good summary of the above:

When I was stranded up there, by myself, did I think I was going to
die? Yes, absolutely. And it is going to happen to you. This is space [life]
it does not cooperate. At some point everything is going to go south on
you, and you’re going to say this is it, this is how I end.

Now you can either accept that, or you can get to work. That’s all it
is, you just begin. You do the math, you solve one problem, then you
solve the next one. And then the next.

And if you solve enough problems you get to come home.

I have a list of ten problems that are currently getting in the way of rehabbing my body. Solving things is slow…

I think my big takeaway is that spinal surgery is really damn painful. A lot more painful than I expected. I had brain surgery to remove a tumor when I was about 25 and that hurt a lot less and the recovery was a lot shorter. It is really hard to not use your back.

The surgery itself was pretty fast. Just a few hours asleep and then waking up groggy. The first thing that actually was bothering me was that my head was itching in a few spots and kinda bloody. Turns out they put my head in a clamp and tighten it in place with some screws during surgery. I ended up in the hospital for three days. A bit longer than expected because I got a pretty bad spinal headache due to losing spinal fluid during the surgery.

After the hospital I was in a hotel in Rochester, MN for a week. The pain for my back got pretty bad even though I was taking a fair bit of oxycodone. Pain as high as an 8 (on a 1-10 scale) which is apparently the point at which I screech uncontrollably. Fortunately it really only got that bad when I was moving to stand up. I flew home from Mayo (first class but was still not at all comfortable) about a week after surgery. Couldn’t walk much so I was in a wheelchair through the airports, and a friend gave me a ride from the airport while Mekayla picked up our car and came home separately with Connor (Morgan had returned earlier and was having a great time staying with friends).

Most of the six weeks after surgery was just laying around and watching way too much TV. Mostly couldn’t even stand to watch anything that I hadn’t seen before so it was really a lot less fun than that sounds. At first I just had too much oxycodone in my system. Then I had a week-long spinal headache that was probably my body adjusting to the new dynamics of how spinal fluid flowed in my body without an arachnoid web getting in the way. After about four weeks I had tapered off of the oxycodone and then had another weeklong headache, that peaked at a non-stop 7 in pain, caused by oxycodone withdrawal and autonomic dysreflexia. That headache was really debilitating.

Throughout the first six weeks of recovery I wasn’t supposed to lift more than 10 pounds, so I couldn’t do any physical therapy other than just walking. When I got out of the hospital I could only walk about 100 feet. It was a few weeks before I could walk for more than a few minutes. Currently I’m up to 12 minutes. Irritatingly slow progress, but steadily improving.

Still taking a lot of Tylenol every day to get through the pain, but I have now started PT exercises and have gone for a walk for 10 days in a row. My muscles feel very weak, painful, and sore all the time, but it it is a start at least. I’m expecting a good year or two of rehab to go. Hopefully my body will start to get used to it. I think all the spinal cord nerve problems I was already having – weak leg muscles, bad balance, muscle atrophy, and using muscles incorrectly – are now just resulting in everything complaining as my spinal cord relearns how to transmit signals to my brain. Unfortunately most of the signals are just pain so far.

But pain is kinda one of the exciting signs. For the past year or so my legs have been really numb and getting more numb. I couldn’t really feel much if any pain in my left leg. The other day though, I dropped a small measuring cup on my foot and actually said “ouch”. I am pretty sure I have been having some sensation returning to my legs that was not there before. Not sure if it will keep improving or if it is all entirely real, but for the moment I’m trying to take pain as a good sign.