In this post I’ll provide an update on what I am going through physically from surgery through the first 10 days of recovery. There is a lot going on so I’ll add sister post shortly that covers more of what life is like in the facility
Where I am and Why I’m Here
After a more invasive than expected surgery that really messed with the motor cord that controls the left side of my body it was very clear I would need rehab before transitioning home. I ended up transferring to a specialized neuro-rehab facility at Sinai Hospital (that’s right, for those of you scoring at home this is hospital #4 in the last 2 weeks). There are 20 rooms/beds here and I am schedule to be released to come home on Thursday October 8th.
I am here for 2 reasons
- I need to be safe at home. I get into the details in the next section but my left leg is really very limited and it turns out that is important for things like ‘walking’ and ‘getting out of bed’ and all of the other fancy things that until a few days ago I took for granted.
- I need to get strong for the rest of this journey. I don’t know everything about what the future holds but it at least holds brain radiation treatments which don’t sound like a walk in the park. It is very important that I get as strong as possible after each time my body goes through one of these traumas (in this case a 4+ hour tumor removal surgery) because this is going to be a multiple step journey and I’ve got to be ready to take on the next one with the same mental and physical attitude as I did the first one.
The amount of time here has been a really hard pill to swallow because I miss my family and I so want to be at home helping with the kids. I get one visitor per day and no one under 18 has been allowed as a visitor since the COVID outbreak. My mind keeps bouncing back and forth between guilty that I’m not home helping Jenn and the kids and a sense of peace knowing I am in the best place to accomplish the recovery goals above. The program I am in is amazing and designed for people in my exact situation so the sense of zen/alignment is real and my family and doctors have all been 100% aligned that this is the where I need to be for the most important part of brain recovery – the first 14 days.
My Body – After Surgery & 10 Days In
Given how invasive the tumor was I’m very fortunate to have as much function as I do. I genuinely thank my lucky stars to be where I am and am very upbeat about where I can get to over time. I’m glad that Dr. Weingart made sure to get the whole things even if it required removing a little more material as my brain is already knitting itself back together and function is returning but MAN do I not want another brain surgery. That sucked.
The Good
- The right-hand side of my body has been totally unaffected through this entire adventure as the tumor was on the right side of my brain (and to the extent I had pinched nerve in my back my sciatica problems have always run down into my left leg). so right arm & right leg 100%. Way to go guys.
- My left arm started to have some trouble before the surgery but it was always driven more by swelling than the actual tumor and the hope was that it would be fine. The unexpected invasiveness of the tumor and surgery means I didn’t get off totally clear but I bet this will come all the way back. Right now I’m a little slow with the hand and coordination but I’m a lefty which is a really good thing because it means I keep using and practicing with it which helps. After surgery it was almost funny trying to pass the neuro test doing things like trying to reach out my arm to touch someone’s finger or go back and forth touching each of my fingers with my thumb but as of this writing on 10/5 I’m at 85% and trending in the right direction.
- My head is a pretty similar situation to my left arm, but it is much less consistent day to day and harder to pick up the changes. 2-4 hours each day I feel 100% back to my old self. Joking, having trouble sitting still and not smiling when a good song comes on, background noise and distractions are totally fine, etc. This is often after naps and showers and stuff – just like I would expect. But there are also still definitely some effects of the surgery and being so sedentary for a while. I have trouble maintaining focus beyond ~30 minutes, I can feel myself getting impatient in situations that I used to struggle and shrug off. I have good and bad days (Saturday 10/3 I slept ~14+ hours and couldn’t get sharp). I also shake a lot which drives me bananas. After I move around I need ~10 minutes for my head to sort of settle in and I’ve had to cut short a couple PT sessions because my blood pressure moves around when my head moves a lot. But this is also impacted by all the drugs I’m on, the sedentary lifestyle, and I’ll even blame the godawful food in this place ;-). All in all the feeling is really quite similar to what is happening on my left side. I can feel it coming back, I feel REALLY good about getting 100% back to me in the not too distant future.
The Not as Good
- The tumor was really wrapped up in my motor cord where it controls my left leg. When he had to remove some extra material it was clear Dr. Weingart was concerned. After the surgery when he stopped in to check on me and I was able to sort of spasm my left knee it was as close as I have come to seeing emotion from him (I would read it as surprise and happiness… but neuro surgeons are just wired different so I could be wrong).
- This is really why I am in rehab and it is pretty bad. For the first few days after surgery I could move my knee a little, my hip a bit, and my ankle only down and at random. I would go hours with nothing below the knee then it would feel like it wanted to go and just sort of move almost on its own. 10 days later my brain knitting itself back together, a concept called neuroplasticity, is really taking place and I can now move all parts of my foot except my toes on command.
- But man am I weak and uncoordinated. I walk only with a walker and can go ?30 yards? before my foot starts failing to lift on each step. I can not control my knee side to side and I had a pretty good workout on the stair stepper type machine. I went 8 minutes on zero resistance and burned 26 calories ;-/
- The weirdest sensation is the inside of my leg feeling like it is filled with alien jello. When I touch the skin it feels normal but inside when it moves it feels tingly and like isn’t mine. I have never been a big recreational drug guy (in fact I have never tried a tobacco product or smoked weed or anything more aggressive than some truly awful blackberry moonshine from some hick buddies at UVA) but my leg feels like a hard drug high as portrayed in a film. An out of body experience filled with super weird sensations. This seems to be subsiding a little but it definitely affects my motor control.
- This time in rehab has been incredibly humbling and challenging to my patience. Jenn has gently chided me from the beginning because although every doctor told me this is the place to be and to reset my expectations and this will be a long path I was convinced with hard work and dedication I could cruise back. That is how everything in my life has worked before. I spoke about getting out of rehab in a few days instead of 14 days, I set targets of walking out of the hospital – may be suffering the great indignity of wearing a brace – but walking none-the-less and frankly it just doesn’t work that way, no matter how bad I want it to. I’ll walk out with a walker, and I’ll have a plan to stay safe and keep getting stronger. I can live with that because…
Longer Term Prognosis & Progress
Literally, everything is trending in the right direction. Not every day, not at the speed I want, but 100% in the right direction. With all the signals my body has been sending me over the last 10 days I have considered every outcome as the place I could be (and let us not forget the doctor was afraid what he cut out meant the leg could be gone for good). Wheelchair -> Walker -> Cane -> Permanent foot-listing brace called an AFO -> Limp -> No Impact. I’ve even accepted each of these outcomes as totally fine given all I’ve been through at some point.
But if the frustration and slow pace of recovery from pain surgery are the bad sides, the amazing flexibility of recovery and knitting, and working around bad spots in the brain are the upside. Most people continue to regain capability for over a year after their surgery. If I were a betting man (and I am) I would say I am cane at 30 days and brace at 90. I may never break my old 40 times and I may have to eat some humble pie as I am outdriven by some of the clowns reading this blog, but with how everything is trending, the patience, the work, and the team surrounding me I bet it all knits together over time and I’m walking the Kinder Loop with a kid or two most mornings by the time it is nice out again. I haven’t hit all my targets, but you better believe I just set another one 😉 I’m hard-headed like that.
Because it Feels Good To Write These Things Down
10/1 – Took a shower and put on my own socks and shoes. This is important because I need to do these things to be home safely
10/2 – Went up 3 steps | walked for the first time with something other than a walker (a very fancy grocery cart in a fake store) | Removed the brace and control my own knee on the stepper
10/4 – Stairs with only one rail like home. Full flight with a break.
10/5 – Stairs with cane | 60 yard walk
10/7 – 243 ft walk, 150 with good clearance