2020 Rehab Review

I guess for most folks 2020 has been a crazy year, though I think for me it was mostly more of the same. COVID complicated things a bit, but rehab is really what is hard. The year didn’t go how I expected, but there were still quite a few accomplishments.

  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.
Changing medications in March-June really interrupted everything.
  1. 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.
  2. 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.

First Hike in Over Two Years

Very exciting day! I went with my wife and kids (5 and 2) for a hike near our house. It is a trail I had been on countless times in the past and had often also run on. I don’t think I’ve hiked it in at least three years. I had spinal surgery about two years ago (Jan 9th, 2019), and have definitely not done anything like this since then. Feels like a huge accomplishment.

I never saved anything for the swim back.

From Gattaca.
(Not really true, but I was thinking of this on the way up)

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.

Exhausted but I think Dreem is Working

It has been about a month since I started using Dreem and I am now 18 nights into the core part of the CBT program. Feels and looks like it is working. I’ve been fairly optimistic for the past week or so.

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.

Sleep Tracking: Apple Watch vs Dreem

For a bit over three years I’ve been tracking my sleep mostly with a an Apple Watch and great little app called AutoSleep. I’ve been suspecting for quite a while that the tracking was not really sufficient. My legs and muscles twitch a lot, and I wake up a lot. Because the Apple Watch sleep tracking is mostly an accelerometer movement is likely to get misinterpreted.

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.

DateDreem
Asleep Hrs
Apple Watch
Asleep Hrs
Dreem
Awake Min
Apple Watch
Awake Min
Aug 46.74.553105
Aug 55.75.82145
Aug 67.54.81345
Aug 76.65.95660
Aug 86.44.5149225
Aug 97.65.726135
Aug 104.35.09135
Aug 117.75.232180
Aug 122.33.6295270
Aug 130 (*)3.60 (*)75
Aug 148.76.512150
Aug 158.06.010135
Aug 167.56.12775

(*) 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.

AutoSleep long term view. I have minor complaints, but they have put some good thought into it.
Dreem – just a scrolling list of nights. You can click in and compare individual stats to 7 and 30 day averages. Averages are dumb though.

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.

A Miserable Four Months of Medication Experimentation

March till early July was filled with experiments for adjusting my medications. It was pretty terrible. I was trying to reduce how much pain I was in. Particularly in the afternoon when I couldn’t focus, and at night when I was trying to sleep but couldn’t. Unfortunately when I talked to doctors about it, the only answer was to experiment. Make a change. Wait three weeks. Evaluate. Then try the next thing. I took a lot of notes that I have spread all over the place. I thought I would rewrite them here since I will likely have to do this again in a year or so.

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.

DateChangeResult before next change
March 13Add 300mg Gaba at noon; 1200mg at night; 1500mg total.– Legs very weak. This is too much Gaba.
– Nerve pain reduced
– Initially very tired, but sleepiness did slowly get better
March 23300mg Gaba at noon; 900mg at night.– Legs still weak. Need to reduce weakness.
– Nerve pain ok-ish. Still there at night sometimes.
– Had to back off and stop most PT.
April 10Stop Tizanidine. Try and reduce weakness– So weak, so tired. Especially later in the week.
– Sleeping really poorly. Maybe Tizanidine was helping me sleep more than I thought.
– So confused. Pretty depressed.
May 11Move vitamins to noon. Maybe my vitamin D is causing insomnia? Or some other vitamin waking me up.– Kept getting worse.
– Even more tired in the afternoon.
May 29Move all magnesium vitamin to night, maybe making me sleepy?– Nope, still crazy tired
June 7Move 300mg Gaba from noon to morning. Maybe that is making me sleepy and the Cymbalta will counteract it.– Nope.
– I feel positively sick after I take my vitamins. Tired and nauseous. Getting worse.
June 8Vitamin D toxicity? I increased it in Nov 2019. Stop all vitamins! Gaba 300mg morning; 300mg noon; 600mg night.– Hooray!
– Still tired, still pain though.
June 13Let’s add back in multivitamin– Nope. Terrible idea. Nausea and super tired immediately comes back. Vitamin D was building up in my system over months and slowly making things worse. Will take months to reverse.
June 22Gaba: 300mg 12pm; 300mg 5PM; 600mg PM. Try to target afternoon pain and evening/night pain.– Kinda helped. Still tough to fall asleep.
– Learned: Gaba absorbed in small intestine and has a 5hr half life. So…
– 3-4 hours for Gaba to fully hit me. This is when I am most tired.
– 300mg reduces pain for 5 hrs.
– 600mg reduces pain for 7 hrs.
July 11Gaba:
– 300mg at 12pm => pain reduction 2-7pm
– 600mg at 5PM => pain reduction 7p – 2a
– 300mg just as I am falling asleep => pain reduction hopefully to 6 or 7a.
– This is pretty much working.
– My sleep is still a mess, but not really due to pain anymore.
– Sometimes tired in the afternoon, but I think better than being in pain.
– Able to start up rehab and PT again.
July 21Stop slow release melatonin. Only use fast melatonin to help me fall asleep. See if I can reset my body’s sleep cycle to work correctly.– Seems to be working so far.

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…

PT: Strengthening My Lungs

My spinal cord getting slowly damaged from T5-T8 over the decades means that pretty much every muscle below my armpits are weakened in some way. Lungs rely on a lot of muscles and even getting aerobic exercise won’t necessarily strengthen those muscles.

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.

Great Recovery Movie: The Martian

I’m currently re-watching The Martian for what must be the 20th time this year. It has become my go to movie when I am in too much pain to focus. Often I don’t even want to watch anything new. So many things feel so unpredictable and take so much thought that I would rather rewatch or reread something rather than try and parse something new or add in the risk that I may really not like it.

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…

Laminectomy for an Arachnoid Web. My Experience and Recovery

It is now about seven weeks since I had surgery to remove my arachnoid web. I thought I would write some thoughts on how recovery has gone since surgery.

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.

Arachnoid Web Spinal Surgery

Welp, on January 9th I had a neurosurgeon from the Mayo Clinic crack off a few pieces of my vertebrae (the lamina portion of the vertebrae) from T5-T8, cut through the dura covering my spinal cord, and then remove a 3 cm long arachnoid web that was compressing my spinal cord. They are pretty certain that the arteriovenous fistula that I had previously been diagnosed with and treated for was completely unrelated to the spinal cord issues I’ve been having. Similar to the fistula though, arachnoid webs are also very rare, about 1 in 500k or so. This paper has some good summaries if you really want to read a lot.

As three (and three quarters) year old Morgan has excitedly whispered a few times:

They figured it out!

I’m trying to not get overly optimistic, but it is quite possible that now that my spinal cord is no longer compressed it may just float back to where it is supposed to be and will conduct signals much better. Really only 1-2 years and a lot of rehab will tell though. I’m pretty excited about the idea of rehab where I can actually make progress though.

So now I have about 5 more weeks of recovery where I’m not supposed lift more than 10 pounds. Unfortunately at almost 4 months now, Connor is already bigger than that. I can however do as much walking as I can manage. Right now I can safely do about 300 feet as long as I have hiking poles to help my balance. Still a lot of pain from the surgery, but it is a lot better than it was last week, so seeing some improvements.

Thanks everyone for all the thoughts and notes. The past month or so has been a hectic whirlwind trying to figure out how to get to the bottom of why things were getting worse. Turns out we hadn’t really figured out the right cause in the first place.

Below is a video of a similar surgery, and a few images of my spine.

This is the removal of an arachnoid cyst which is pretty much the same procedure just a slightly different malformation.

Ugh… Ongoing Spinal Cord Damage

Welp, as of last Thursday I feel pretty certain that my spinal cord is still getting damaged. The spinal arteriovenous fistula that presumably caused the spinal cord damage was embolized (glued closed) in September 2017. From what I understand though, embolization is only about 75% successful, so I guess I am in the remaining 25%.

Unfortunately, the only real way to know whether it has been successful is to monitor your symptoms and look for additional problems. Especially new problems or more than one problem changing. This has been pretty difficult given that I have been trying to do spinal cord rehab and constantly trying new medications and treating other side effects from the spinal cord damage (like sleep apnea).

Over the past few weeks though I’ve been slowly coming to the realization that I have more bladder urgency than I used to have (and one time where I didn’t get where I needed to in time which is ummm… “fun”). It would probably be far worse if I didn’t work from home. Then on Thursday my PT redid my muscle strength testing that was done in January at Craig Hospital and it was fairly clear that some of my muscles, which were rated as 5 out of 5 then, are no longer 5s. Given that I’ve been regularly doing PT exercises all year long I definitely shouldn’t be getting weaker.

I don’t really know whether the damage has been occurring slowly all year long and only recently did the damage become enough that it started making the symptoms worse, or maybe something recently changed and I just started getting more damage. I am pretty certain that the embolization did reduce the rate at which things had been getting worse. Definitely the rate at which I was getting worse in 2017 was much greater than 2018 has been.

So I’m off on the hunt through medical systems to find the right doctors and surgeons to diagnose and hopefully actually fix the problem. First step was two hours of MRIs this past Monday which I don’t expect to find anything new. I imagine I won’t really get anything diagnosed until I can get some neurosurgeon cutting into me to take another look.

Forward.