It’s all coming together

…or rather, it’s all coming apart.

What do I mean by that? Well, after (almost) 5 years of carting around a dead weight, I am scheduled for an amputation in May. I honestly can’t wait to get rid of this meat-anchor – I never realised how much an arm weighs, but when it can’t support its own weight any more you feel every gram, trust me.

According to my impeccable sources (Google) an arm should weigh approximately 6.5% of your body weight, which as someone who is no stranger to a square meal, makes mine 14lbs (or 6.37kg). I’m assuming that’s the total arm up to the shoulder joint, so it’s not totally accurate for me as I do have some shoulder function; I have muscle wastage in my trapezius and deltoid but I can still shrug. I’ll post the saga of my shoulder another time, as today I want to talk about amputation.

This is one of those topics that polarises opinions, as people instinctively seem to take up one of two positions:

  • I’d never choose amputation. My arm is part of me and I can’t imagine getting rid of it. I’d look strange, and you never know what medical technology will be able to do in the future. When it’s gone, it’s gone forever.
  • What’s the point of keeping an arm that doesn’t work and never will? I don’t want to carry my arm around for the rest of my life hoping for medical miracles that may not happen in my lifetime. I want the quality of life improvements from amputation.

As you have probably gathered, I’m in the second camp, but I want to stress that in this era of bipartisan ‘us vs them’ mentalities, there is no right answer here. This is one of the most intensely personal decisions it’s possible to make, and at the end of the day, you’re the one that has to live with the consequences of your decision. Only you can make the right choice for your own wellbeing. I’m not here to preach the One True Way of dealing with a dead arm, but here’s my decision and the reasoning behind it. Maybe it’ll be useful for others.

Having it off (fnarr)

For me, the overwhelming reason for getting shot of my arm is quality of life. I’m tired of hauling it around all day. I’m fed up of wearing my sling. I’m annoyed that I have to pay special attention to the danger of burns or trapping it in doors or knocking it on furniture. When I called it a meat-anchor I meant that literally; I feel held back and dragged down by my arm. I’ve already amputated it mentally, when I realised that I was never going to use my hand again.

Another reason I want it gone is that the only recovery I had from my sural nerve grafts was a slight regain of sensation in the palm of my hand and thumb/index finger. This would be a good thing except that this sensation just manifests as a flare in the phantom pain in that location, not true sensation. Imagine how many times a day something brushes against your hand when it’s in a sling hanging in front of you. The one that gets me most is when I’ve wrestled my coat over my sling and moving around rubs the coat against my hand repeatedly. Same thing  when I’m in the car and the constant jiggling (curse you, Aberdeenshire road surfacing *shakes fist*) just delivers extra pain.

Speaking of coats, I’ve always had my coat on over the top of my arm-inna-sling and left the empty sleeve dangling. I think it’s important to plan ahead and decide how you’re going to approach clothing post-amputation. I’ve got a friend of the family who is a seamstress, so I’m going to have the sleeves altered on my coats and jumpers.

Fake news arms

So, prosthetics. I’ve actually decided not to bother with a prosthetic. When it comes to aesthetic arms, my approach has always been that if I was bothered about how I would look with an above elbow amputation, I’d just keep my current arm. Functional arms are a bit trickier to discuss; are we talking about the good ol’ pirate hook or the Skynet-heralding robot arms you see in the news every now and then? This is a great article from the Amputee Coalition site, that goes through some important factors to consider when thinking about upper limb prosthetics:

  • After almost 5 years of being one handed, do I really need a prosthesis? I can do most things with what I’ve got, and the functions I can’t manage, I doubt current/available technology can do
  • Upper limb prosthetics give little sense of the environment and can be physically and mentally demanding to use
  • The weight of a prosthetic, even where that weight is the same as the body part it replaces is fatiguing
  • I don’t have enough function in what’s left of my upper arm to work anything technically advanced
  • There are assumptions made about the extent to which technology can replace what we’ve lost – even the most cutting edge robot arms are not a perfect replacement for a real arm

I think this raises an important point – I often get friends and family linking me videos and articles of people who had arms replaced with bionics or external exoskeletons that let you move your arm again. But as one of my favourite fictional characters is fond of saying, ‘you have to be realistic about these things’. Everyone loves new technology, but in this era of NHS austerity and given I’ve experienced a 41 week wait to just to get an appointment to discuss elective amputation and am on a 12-18 month wait list for a spinal cord stimulator,  what are the chances that I’ll get a Terminator arm?

My whole approach to elective amputation has been one of practicality, pragmatism, and being realistic. I’m looking forward to drawing a line under my flail arm and getting on with the rest of my life. Bring it on!