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.