Crashing like cymbals.

While the ‘harmonica’ pain is regular — you might say unremitting — every so often my central nervous system reminds me just how screwed up it is. Without warning I experience a sharp spasm of electric agony behind my left leg that renders me incapable of speech. I clutch my hamstring and grimace, barely breathing through my clenched teeth. If Linda is with me she rubs my back. It doesn’t do a damn bit of good but it reminds me that, at that moment, I am not alone. If I am alone, I sometimes scream. I am overwhelmed.

After 10-15 seconds the agony fades and after a final, forget-me-not jolt, it vanishes into the ether. Like the post-coital harmonica I am now pain-free, until the next time.

I liken these spasms to cymbals because they are sudden, sharp and, left to themselves, they produce a lengthy tone. Again they occur in the back of my leg (sciatic nerve again) but the precise site varies. They often invade during an otherwise calm period, just to keep me on my toes. They are also a comparatively recent phenomenon, perhaps associated with my trunk’s slow collapse into my wheelchair. The one thing that both sensations have in common is the heel, because the spasm invariably radiates down there. I remember my left heel once ruined a job interview. You know how vain types hate their profiles, or their ears, or their middle-age spread? I hate my left heel.

Every so often, I wonder why I bother taking drugs to ‘control’ pain like this. Sometimes, if I am enjoying an infrequent quiet patch, I will try to reduce the dosage. It won’t be long before I am forced to accept that, without them, life would be worse.

Wailing like a soft blues harp.

I get more excruciating pain but this is the most distracting and most regular, and I’m experiencing it right now. It starts in my left heel, often at its back and left, occuring every 3-4 seconds and lasting 1-2. It goes on for days (and nights) and there is very little I can do to mitigate it. It helps if I stand but I can’t do that for very long. It doesn’t respond to pain-killers. I hold my heel or, sometimes, the back of my knee to my chest — more for comfort than anything else. This is one of the reasons my left leg is now shorter than my right. Seriously. It’s over 4cm.

Sometimes I get relief from lying on my back on the floor. On occasion, usually when I’m in this position, the throbbing will build in intensity, and migrate to the back of that knee, building and building until I experience what I can only describe as a climax. Thereafter I can be blissfully pain-free for a few minutes, perhaps longer. If lying down, I can catch up with some sleep.

I often descibe this as sciatic pain distorted by the spinal injury, but I’m told that the relevant nerve is not damaged.

… to get his pain fixed!

Johnny has been troubled by acute nerve pain ever since he became paraplegic, through a flying accident in 1985. Since then he has tried everything, from cranio-sacral massage to spinal surgery, from faith-healing (not enough, clearly) to dope cookies — all without lasting success. I did get two weeks off after the cookies (Dad, bless him, was my dealer) and a full six weeks after trying CBD oil, but after the jolts kicked in again they would not go away. I stayed clear of opiods, thank God. They didn’t stop the pain; I just didn’t care about it.

But I have spent all the past 36 years on healthy doses of other prescription drugs, including anti-depressants that coat the damaged nerve endings. Without them, the pain would be even worse. I have always pointed out that the stuff was there for the pain rather than depression, but the pills must have affected my demeanour. It would also acccount for the levels of vagueness and general lack of spunk that cost me work as a freelance and one particularly exciting full-time job. That’s my story, anyway.

The paddle

A couple of weeks ago I tried something else and, as I write, am waiting to find out if it works. In the Neurological Wing at St.George’s Hospital, Tooting, I was fitted with a spinal cord stimulator that emits a signal to counteract the pain. It consists of a strip (they call it a ‘paddle’) of electrodes fitted to the appropriate lumbar vertebra and connected to a battery pack inserted into my side — at the bottom of my left-hand ribcage. I was only in for a few days.

The slim controller

Yesterday I returned to have the device switched on and tuned. The staff used a tablet to start and adjust a vibrating signal emmited from my device, to help me find the best location and signal-strength. The device was then switched over to emit the same signal but with the vibration removed. I was presented with an actual i-Pod Touch to help me adjust the timing, and a substantial magnet for jump-starting it (or me, I need to read that up). The prognosis is a 70% reduction in 70% of the pain, which I can live with and which I hope will allow me to come off the pills. I’ll need a new battery pack every five years.

Next Monday I have to send Merry (Clinical Nurse Specialist) a photo of one of my wounds, just to check all is well. By then I should also know whether or not the device is helping.

Whatever the outcome, many thanks to Merry, Messrs Pereira and Mostofi and the Neuromodulation team for their skill and care.

So far, Johnny hasn’t noticed anything exciting, apart from the vibration frequency appearing roughly the same as that of his electric toothbrush. Perhaps he could have shoved that up his bum, switched it on and saved everyone the trouble.