Author: Greg Ichneumon Brown

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:

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 a post about my damaged spinal cord, but I’ve been working at Automattic for seven years now, so I really can’t help but think about the first line of the Creed:

I will never stop learning.

I strongly identify with this line, but damn it is hard sometimes. The past two to three months I have been in physically terrible shape. Every 3-4 weeks I’ve been learning something new about how my body now works, and this learning is both metaphorically and physically painful.

Aristotle – “Learning is not child’s play; we cannot learn without pain.”

Damn Greek philosophers!

Really I think I’ve been learning something new about my body every few weeks for the past 10 months. Currently feeling hopeful that I can put some of the physical discomfort behind me, but a part of me knows that is probably overly optimistic.

Abdominal Muscles

In early June I went to a work meetup in Denver which contributed to me pausing my PT exercises for about two weeks. Then I tried to pick up where I had left off. It turns out though that muscles atrophy faster when you have a damaged spinal cord, so two weeks off is more like 4-6 weeks off for me. On top of that, it turns out I don’t really have much sensation in my abs. So when trying to do my PT, I didn’t realize that I had badly pulled my abs, so I kept going and pushing through as my exercises got harder. And then for the next week I really couldn’t stand up. About a month later, as I was finally getting better I pulled them again, probably due to dehydration.

My lack of sensation in my abs is so bad that my PT can push on them to get the muscles to release and I am perfectly comfortable where he says anyone else would be in agony. Turns out pain is a really useful feedback mechanism.

I now finally understand why every few years since about 2006 I have badly screwed up my abs to the point of having trouble standing. I just didn’t have enough sensation to tell myself when I needed to back off from whatever I was doing. This problem has been there for a long time. At least I understand it now.

Sleep Apnea

I started on an APAP machine in mid-June. It wasn’t until about two weeks ago that I found a mask configuration where I am pretty comfortable and feel like I can sleep well. There was a lot of bad sleep along the way to figuring that out. But I think I can now see some improvements to two of the fatigue metrics that I have been tracking: grip strength and heart rate variability. This is pretty exciting. My grip strength – yes grip strength! – has increased something like 20% on average. Similarly my heart rate variability has increased by 10-20% which is an indication of less fatigue.

Pretty exciting that I am seeing an improvement in the metrics that I had identified as mattering. For some reason my watch has not been showing an increase in deep sleep, but overall I have also been feeling somewhat less fatigued so I’ll take it.

Unfortunately I have actually been feeling more tired which is probably related to how much sleep debt I have. Supposedly that can take months to catch up on. Just in time for kiddo number two to show up! 😉

Anti-Depressants

The other recommendation I got to deal with fatigue was to start taking Cymbalta which is both an anti-depressant and can reduce nerve pain (maybe allowing me to reduce another medication which can also add to fatigue). I started in early July, and the side effects have been pretty terrible: insomnia, nausea, dizziness (especially looking at a screen), and light headedness due to my blood pressure dropping.

The first week was so bad that after days of nausea and insomnia I repulled my abs because I got very dehydrated. Then ended up calling an ambulance at 3AM when I couldn’t stand up without getting dizzy. Every time I stood up my blood pressure would drop about 40 pts. After they put two liters of fluid in me I was a lot better, but ya it was a bit exciting.

Sidebar: when you are laying on the floor unable to stand, alone in the house at 3AM (Mekayla and Morgan had gone camping), but otherwise ok, it is really hard to know when to call an ambulance. Also, it is really nice when you have a watch on your wrist from which you can make a phone call rather than having to go find your phone.

After about five weeks on Cymbalta, I think I am mostly adjusted to the medication. I am not sure it has helped with fatigue, but I am in an amazing mood. Given how rough the past month has been, I have actually been feeling pretty good about everything.

So… um… yay anti-depressants. I don’t actually think my depression was all that bad. It happened occassionally. What I thought of as maybe a few times a year. The reality is that it was always probably there more than I even now want to admit. Wil Wheaton probably explained this better than I can. But I would say that even though I am unsure just how bad it was, that I wish I had tried this years ago. If you are reading this and thinking about it, you should know that there are other meds besides Cymbalta where the side effects are typically not as bad.

Increased Sensation

This one is really just funny.

So my spine has become a bit crooked (not yet the funny part). It turns out that this was because my shoulder and back muscles had become chronically tight to compensate for my bad balance. My PT has been working on this for many months, and it is improving, but I decided to also add in getting a massage from someone who has experience with spinal cord injury clients. In lots of places my body has reduced sensation, but the sides of my torso are extra sensitive. A little bit of pain is just unbearable even when I know the massage is not that strong.

So, the massage reminded me that my sides are extra sensitive, and then solved a long running bout of marital discord. For years, Mekayla would lay on my shoulder, and then I would yelp and ask why she was digging her fist into my side and she we would plead complete innocence. Ignorance even. She would complain that I was being overly sensitive and I would say something about why she has to twist her knuckles into my ribs. This has been going on for years.

Turns out I was being overly sensitive.

Ooops.

Gnōthi Seauton

I spent most of 2017 trying to diagnose the slow degeneration of my ability to run and then walk. Then the past nine months have been slowly trying to discover how much I can recover from my spinal cord injury. My spinal cord damage is non-traumatic which means that it is a bit different than the typical spinal cord injury – though I’ve rapidly learned that all spinal cord injuries are really pretty unique experiences. In general, for someone who is missing 30% of his spinal cord for a couple of vertebras I am doing really well, but that really doesn’t make it feel any easier most of the time.

My rehab is still a work in progress, but I’ve been wanting to write about the data I’m collecting for a number of reasons:

1. I learn a lot by writing, and it helps get the details clearer in my head when I write them down.
2. Hopefully sharing this can give ideas to other people struggling with similar problems. I’ve taken a lot of ideas from folks with multiple sclerosis, chronic fatigue syndrome, and of course spinal cord injury.
3. Comments on blog posts can often provide a lot of great feedback and other ideas of things to pursue, so hopefully I’ll learn something from you.

So I’m going to cover a good chunk of the data that I am tracking about my day to day symptoms. If you don’t want to know a lot of details about what is going on, you should stop reading now. Also, I should probably warn you that I like data a lot, track a lot of data, and this is going to be a 3,000 word post. 😀

Background on my Symptoms

Probably helps to outline my symptoms around walking/moving:

• Injury diagnosis: T1 ASIA D – Sensation changes start at Thoracic 1 though most of the visible damage on the MRI is from T5-T7. “D” because I can walk, and don’t need a cane or anything. For comparison “B” would be in a wheelchair but with some sensation/control, and “E” is normal.
• Walking ability: I was close to falling down a lot (and did once), but the Tizanidine I’m taking has gotten the spasticity under control so that I almost always feel pretty stable on even surfaces. Changing speed is challenging though as is looking around while walking, but both are improving. Otherwise my walking is mostly limited by endurance and how much pain I want to be in. I’m averaging about 4.5k steps a day this month. Typically, less than 5k steps I’ll be fine, and more than that I’ll be in pain later in the day or tomorrow.
• Muscle control and gait: I have poor control over lots of muscles from my chest down, and it is not symmetric. Certain sides and certain muscles are very hard to activate. For example, my left hip is much harder to control than my right. This resulted in some odd walking problems where I’ve learned (over more than a decade) to balance using my left shoulder which is always really tight, and my right hip which is always sore. Was resulting in a slight limp. Also my ankles have very poor control. Manual manipulation by my PT and lots of focus on being able to activate particular muscles is slowly helping. I have a lot of habits to retrain.
• Pain: My feet are always numb to some extent. As I get more tired it becomes a burning pain and eventually my legs start twitching which also hurts. Overall pain usually varies from 2 to 6. I haven’t not been in pain for over a year. I’m taking Gabapentin to reduce the nerve pain. Helps a lot, especially with falling asleep. Only take it at night because it was increasing my fatigue during the day though so often in more pain as the day goes on and the drugs wear off. Most of my pain doesn’t happen immediately, it kicks in a few hours after the activity, so it is very hard to have good feedback.
• Fatigue: My fatigue is delayed by many hours and often builds up over the course of multiple days. This is not muscle fatigue, but more full body fatigue that I now think of as “central nervous system fatigue”. Coping with this is what led me to trying to track my fatigue and various symptoms daily so that I could know when I needed to back off before I ended up just laying on the couch unable to move for hours at a time. This used to happen a lot and at those times, even reading to my three year old was too much.
• Balance: My balance is pretty bad. I can maybe stand on one foot for 10 seconds. When I have my knee braces on it is a bit better, but still pretty bad.
• PT recovery: I have trouble recovering from any amount of physical therapy. Especially I think the balance exercises really increases my fatigue. I can do a day or two in a row of my 1.5 hrs of PT, but then I’m very exhausted and in pain for another day or two. Currently I’m getting about two PT sessions a week in, and I’d rather be doing four.
• Standing: Took me a while to realize that just standing around talking with friends often ends up with a lot of ankle pain later on. I didn’t really understand this until just recently. I think it is a combination of my ankle muscles being weak and my balance being poor which makes me work my ankles more.
• Running: I can run. Yay! Not far, but mostly because I am out of shape. It hurts at the time though, and it puts me in pain for a few days. The big problem with running is that it increases fatigue and then makes it harder to do my PT exercises. I really want to be running, but it takes so much out of me.
• Sleep apnea: I was just diagnosed and haven’t really started my machine yet (tonight!), but this is the most exciting diagnosis I’ve ever had because it seems so likely to be solvable. It may also be at the root of a lot of fatigue and recovery problems. 20% of the population has sleep apnea, and a significantly higher percentage of folks with spinal cord injury do (which makes sense given that we have less control of our muscles). Given how easy the test was (basically just take home a device to wear at night) I feel like everyone should get tested.
• Depression: Ya depression happens a lot. Most of the time it hasn’t been too bad, but sometimes it is completely debilitating. I haven’t started any anti-depressants yet. I’m hoping a lot of this is due to the sleep apnea and lack of sleep (and of course trying to adjust to having paraplegia).

I feel like I keep learning about my symptoms and my body, and I seem to learn something new every few weeks.

Docs, PTs, and Specialization

I am fortunate enough to live near Craig Hospital which is one of the top spinal cord rehab centers in the world. The difference between my docs/PTs at Kaiser (even the ones who know a lot about spinal cord injuries) and Craig has been night and day. I ended up also finding a PT near me who used to work at Craig to go to weekly as well.

Tools and Devices

I’ve been using a bunch of different technologies for tracking and walking.

• DeRoyal Knee Braces: I’m using these all day long to prevent my knees from hyperextending backwards. Starting with these immediately doubled how far I could walk without ending up in pain. There is a pretty common refrain from folks using wheelchairs that their wheelchair gives them freedom and though my own paraplegia is nowhere near the same, putting on these knee braces gives me an incredible feeling of freedom. I’ve also been doing some of my own modifications to my braces to make them easier and work better for me.
• • Knee sleeves: I found that wearing the braces was causing me a bit of discomfort by the end of the day. Putting on some knee compression bands under them gets rid of that problem almost completely. At first I also tried using Rolyan Cotton Stockinette, but it starts falling apart after about a week so I would constantly need to be making new ones.
  • Marking with silver sharpie where on the straps I am velcroing the cross over straps so I don’t have to spend time trying to figure out how to adjust them each time. I started marking with just some tape and moved to sharpie once I was sure of the location. Simply writing a big L and R on the inside makes getting them on so much faster also.
  • I’m tying a small shoestring from the top flap to the plastic buckle loop to reduce how much the top strap slides down throughout the day. You can see this at the top of my right brace in the picture below.
  • I found that the straps that came with them were not quite the right length so I bought some shorter replacement straps (and then put tape over the logo).

• New Balance 990v4 Running Shoes: I ended up with New Balance running shoes in order to get better stability when walking. They also were wider than the shoes I had been wearing that makes them work better with my orthotics.
• Orthotics: custom made by my PT at Craig. It was kinda like LEGOs for orthotics, pretty cool.
• Polar H10 chest strap heart rate monitor: My watch also has a heart rate monitor, but to get good monitoring of heart rate variability (see below) you need a chest strap.
• Apple Watch: I’m using a bunch of different apps for tracking and building habits. There are a lot of different watches out there, but the breadth of Apple Watch apps is what really helps me:
• • AutoSleep: My only complaint is that I feel like it could have told me six months ago that I should get a sleep apnea test. 🙂
  • Streaks: I’m big into habit building, and this is mostly what I use right now. It is always right in front of my face (on my watch), so lots of reminders throughout the day about what I am trying to work on.
  • Meditate: really nice meditation app that I can start from my watch and is not overly distracting.
  • Apple health for step and distance tracking (also swimming when I can). The HRV data from this is not accurate though.
• Grip strength tester: I use this as a proxy for how tired my nervous system is (see below).
• Ankle Stabilizer Brace: Just recently got these. I’m not wearing them all of the time, but if I know I may be standing around a lot or my ankles are in a lot of pain then I’m wearing these. I’m also thinking to try running, hiking, and biking in them to see how much that helps reduce pain. So many experiments…
• Airex Balance Pad: I use this for a lot of my balance exercises. Makes balancing just a bit harder.
• BOSU: I haven’t been using this for balance exercises as much recently because it is mostly too hard for me. Need to master things on the Airex first, but expect I will get back to using this too.
• Other iPhone Apps:
• • Symple: I use this to track symptoms daily and throughout the day
  • EliteHRV: I use this with the chest strap above to measure my heart rate variability
  • YouAte: taking pictures of food
  • MetroTimer: a metronome to help retrain myself to take even steps.

PT Exercises

I’ve gone through a lot of different PT exercises and as I said I’ve worked with a number of different PTs. My current set is focused on getting the exercises really good and solid before moving on to the next set. That was probably one of the biggest mistakes early on with things like balance exercises, I didn’t really have them completely solid before I worked on making them harder.

I’m not going to describe all my exercises, but I will describe how I am rating my ability to do them:

• Level – I abbreviate this to be something like L1, L2, L3. The levels are arbitrary and a bit dependent on the exercise. For balancing on one foot for 30 seconds for instance the levels are:
• • L1 – eyes open, looking at one point
  • L2 – looking around constantly
  • L3 – eyes closed
  • L4 – eyes on one point, but standing on my Airex
  • L5 – looking around constantly, but standing on my Airex
  • L6 – eyes closed, but standing on my Airex
• Repetitions – for exercises where I am doing repetitions, this is how many I am doing. Squats for instance.
• Ability (1, 2, or 3):
• • 1: means that I can’t do something non-stop. For 20 repetitions, I need to stop. For a balance exercise, I fall over.
  • 2: I can do it, but not easily. For balance this means my arms are waving around or that I feel I need to use my shoulders or other muscles I shouldn’t be using.
  • 3: It feels pretty good. Maybe not perfect enough to move on to the next level, but probably will be able to move on in a week or two.
• Sometimes color coding also – yellow, none, green. Currently I am only using this for balance exercises to indicate whether I am wearing my knee braces and shoes or not.

Ability to do PT exercises doesn’t change very often, so I only record these once a week, and I’m really only looking for improvements over the course of 3-4 weeks at a time. Having some metrics to use and slowly seeing improvement helps with a feeling of having some accomplishment. It will probably also tell me when I have maxed out what I will be able to improve.

Here are 6 weeks of recent tracking.

Daily Fatigue Tracking

I’ve experimented with a number of methods for daily tracking of my fatigue so I would know when to take it easy. I print out spreadsheets for this and tape them to the wall so I can fill them out during the day, and then every week or two transfer it to a spreadsheet on my computer. Here is what I am currently tracking and why:

• Resting heart rate. Usually goes up above 57 when I am more tired or sick.
• Hours of sleep (from AutoSleep): varies a lot. Below 4 is bad.
• Hours of deep sleep (from AutoSleep): if I am not getting deep sleep then my body is not entering the sleep stage where my muscles actually recover
• Grip Strength: This is used by some elite athletes to track “Central Nervous System Fatigue”. Not great scientific evidence, but for me I find that when my score is low (below 47) then I need to back way off.
• Heel Raise. 5 point scale: 1 – can’t do it, 2 – very hard, 3 – doable, 4 – have a little bounce, 5 – ready and raring to go
• Pain on the usual 1-10 scale. At 5 the pain is pretty hard to ignore. If I wake up already at 4, then it is going to be a rough day because my pain almost always increases. This is tricky though because sometimes the pain is due to things unrelated to walking, mostly bowels (that’s a different post).
• Heart Rate Variability: from the EliteHRV app. Below 47 is usually not very good.
• Steps (at the end of the day): In general more steps puts me in more pain.
• Some things I just track in notes, and then summarize later:
• • Fatigue (Y/N)
  • Bad (Y/N)
  • Autonomic Dysreflexia (Y/N) – for me this is triggered by bowel problems

Most of these I record in the morning, except grip strength, pain, and hell raise I do both morning and night. No single metric is enough to say that I am fatigued, but they do give me a sense of whether I need to back off or not. I also track whether I did any PT, walking, running, and notes about my day.

Some recent data:

I’m a pretty big fan of conditional formatting in a spreadsheet to pull out patterns.

Monthly Fatigue/Sensation Tracking

Because my spinal damage is non-traumatic it is possible that it hasn’t fully been fixed and unfortunately the only way to know is if my symptoms start getting worse (at which point they probably won’t get better). So I am doing a bunch of monthly tracking to see if I can find any signals that would indicate that things are getting worse. Most of these are based off of various standard medical questionnaires.

• Fatigue: I am using the Modified Fatigue Impact Scale (MFIS).
• Depression: I am also using the PHQ-9 for tracking depression.
• Sensation changes: I have print outs of the ASIA scale that I am trying to self rate myself with. I basically use a pen cap (perfectly calibrated of course) to poke and rub parts of my body and recored where I am extra sensitive (X), triggers twitching (T), no sensation (O), and numbness (N). Especially looking for differences between each side and changes

https://pt.slideshare.net/dennis43/standard-neurological-classification-of-spinal-cord-injury?nomobile=true

I’m also tracking a bunch of bowel and bladder data from month to month, but I’ll leave that for a separate post since I could probably write 3,000 words on that topic too.

Your Turn

OK, so there is everything I am tracking around sensation and movement so far. I’d be really interested in anything others have found useful. This is already a lot, but since I keep learning new things, I assume there is a lot more to think about that I am missing.