So, first, a review of the facts so far: as of October 2023 they had cut out a piece of my radial nerve and sewn in a piece of my sural nerve, and I had begun the 2-3 year recovery process. The surgeon had informed me that first the nerve needed to grow over the removed area – the grafted nerve wasn’t just a live wire the signal would instantly shoot down – it was more a track laid for new nerve growth to happen on. And nerves grow about an inch per month; and they’d taken over 4 inches of nerve out of my arm; so they didn’t expect to find out if that connection had regrown for about six months; after which the nerve would continue growing down my arm, inch by inch, month by month, slowly reconnecting first one and then hopefully many strands to the various muscles it was responsible for.

Unfortunately, nerves that are not receiving signals are also prone to dying back, and motor nerves die back permanently, so we were starting a race between the nerve growth and the nerve death.

Remember that I was already feeling weakness in my fingers before all this surgical intervention? Well upon examination they found there was already some amount of nerve atrophy in my radial nerve below the elbow – in fact there was even muscle atrophy in my extensor muscles on my forearm.

So the surgeon was very up front with me: we were not likely to be able to regrow nerves that were already nearly gone. I don’t expect to recover any of the function I lost prior to 2022. We are hoping to recover most of the function that i had the day I went in for surgery, but there are no guarantees. We took the growth out because there was a chance of saving my wrist and elbow function from it if we did it now, whereas waiting till the growth fully eclipsed my radial nerve meant that the nerves downstream would likely be fully irrecoverable.

If I do not regain nerve connection enough for a basic level of function in my hand, we will look into a tendon transfer procedure. That’s the potential third year of recovery. It would entail detaching one of the flexion muscles from the tendons on the palm side of my forearm and reattaching it to the extension tendons on the upper side of my forearm, giving me muscle power to extend everything, but also forcing me to learn to fully rewire my brain. I’m not personally SUPER excited for that challenge, but if I need it I need it, y’know?

Two facts for you:

• firstly: what exactly happened to me is so rare that in the center of healthcare and cutting edge medical science in canada, I still can’t find anyone who’s ever seen anything like it before!
• but, secondly: whatever IS causing you problems is still real and still needs to be dealt with; if I could offer one piece of advice from my journey it would be to ask for help sooner than later, and not to be satisfied or give up if things don’t improve on the first try.

I let this fucker grow in my arm for six years before I had the space in my head and my life (and the insurance coverage for the physio) to really chase it down. I don’t know how finding it sooner would have changed anything; I don’t know if we COULD have found it till it was big enough for me to palpate under my brachialis (read: feel with my fingers where it grew underneath the muscle under my bicep). I am doing a lot of Accepting that This is the State of Things and trying not to chase regrets backwards; I know that’s a trap. But for advice: feeling weird? Get it checked out if you can.

So neurology covers the brain and nervous system, right? And the brain and spine are the central nervous system, so the limbs etc are the peripheral nervous system. A peripheral nerve surgeon is not a brain surgeon – in my experience they are more likely to be a plastic surgeon, a term that encompasses an enormous amount of lifesaving medicine despite what television may have taught you.

back in 2016/2017 I noticed some weakness in my right index finger – it wouldn’t extend (straighten) as far as my other fingers. At the time I was about eight years recovered from some serious RSI in both wrists that had affected my range of motion, and I assumed this was the same or similar flaring up due to an increased freelance art workload/a kickstarter/et cetera, and simply stretched my way through it.

in 2019 i was doing physio for an upper back injury and asked about it, as the finger was still weak, and we started rebuilding some movement, loosening up the knuckle joint, etc. we didn’t get to do much tho because I broke my ankle catastrophically and had to redirect my energy to relearning how to walk.

in 2022 I was finally done acute ankle recovery and asked another physio about the weak finger extension, and she and I went through a few months of me trying to rebuild strength in it. At this point it was clear that the weakness also impacted my middle finger, but that was the only symptom – there was no pain or any sort of discomfort.

After a few months showed us that there was no progress being made, the physio recommended I ask my doctor for a peripheral neurology assessment, because it seemed like I had maybe some nerve injury or compression happening somewhere in my arm that would cause this.

September 2022 I saw the neurologist, who spent two hours with me doing all the tests, only to say “that’s weird. get an ultrasound.” By December 2022 I’d had an ultrasound, MRI and CT scan of my arm and we were quite sure there was a growth much farther up my arm.

February 2023 I was meeting with a peripheral nerve surgeon; he assured me there was no reason to think this was cancer, but, they were taking it seriously nonetheless.

In May they did surgery to see if they could remove the mass without damaging the nerve. Turned out the mass WAS the nerve, though, so it was back to square one while the surgeon explained nerve grafts and tendon transfers and so forth.

October 2023 I had the surgery to remove the growth and a few cm of nerve on either side of it, and to graft in a very long piece of nerve from my right calf.

It went well!

The nerve they took from my calf had no motor function, just sensory, and so doesn’t affect my movement, but it’s two hefty scars on that leg at the top and bottom of the chunk they removed.

The nerve they removed from my arm has been to every lab in Canada that might know something about weird nerve growths, now, and they have found nothing wrong with it, except that it had grown there in the first place, functionally destroying the use of that nerve slowly over eight years.

They found an almond-sized growth on my radial nerve above my elbow in my right (dominant) arm, and in october 2023 they removed it and grafted in a sensory nerve they took from my right calf. I have been slowly regrowing my radial nerve since then. The growth has turned out to be a benign medical anomaly, and while there are no current clear explanations for why it happened, no one seems to think I should worry about it happening again anywhere else. Just, random chance took out my dominant hand.

Maybe I was getting too powerful.