Getting legless – Part 1

There are some words and terms I never thought would apply directly to me.

Amputation. Stump. Prosthetic leg. Bedpan.

Turns out, as time goes by, you can sometimes find yourself facing, or experiencing, these sorts of concepts. (I didn't actually have to face the bedpan ... but there was one there, in the room, mocking me).

Three weeks ago I had my right leg amputated just below the knee. I asked for this to happen. In fact, I pressured my doctor to speed up the date of the operation, once I told him I wanted to have it done. I bent him to my will, and he moved the date up by a week.

Why would I do this? Had I succumbed to the ultimate absurdity ... a desire to disfigure myself for no good reason?

I'll try to nutshell the reason. I asked for the amputation  because I have spent almost 9 years dealing with the fallout and domino effect of learning I have a genetic nerve disorder called 'Hereditary Sensory Autonomic Neuropathy' (HSAN) Type 1. This inherited thing lurks within genes (mostly men) and surfaces on or about the age of 40.

My HSAN erupted at the age of 42. It desensitizes extremeties (feet usually, sometimes hands; other Types can include hearing and eyesight). My feet rapidly went numb, and while mountain biking, I broke my right foot (several hairline fractures) and didn't feel it happen. After walking around on a broken foot for a month, the foot swelled and the toes and bones started to mutate in unusual and absurd directions.

It took some time to find out I had HSAN Type 1 ... a neurologist had to look it up, it's that rare. It also took a lot of time for me to come to terms with what the follow-on effects are, and how I went from "It'll get better, I can deal with this" to "Can we hurry up and amputate this leg NOW?"

Follow-on fun with HSAN and a broken bone include weird bone mutations, and massive infections. This meant lots (20+) hospital stays to fight the infections with IV drips and surgeries. And a steady diet of anti-biotics.

Somewhere around June 2010, I noticed I was suffering from what felt like low-grade flu symptoms. The big red flag that had previously heralded the need to be hospitalised was high-grade flu symptoms (raging fever, chills).  By August, these low-grade ones hadn't gone away, nor gotten worse ... a GP visit punted me over to my usual orthropaedic surgeon, and after a few tests and a consultation with the ominously-named Infectious Diseases doc, it seems anti-bees no longer work on this infection.

The leg needed to come off.  It didn't take me long to decide to make it so.