Thursday 9 July 2009

high voltage...

The Patient Investigation Unit at QMC is located in ward D8 on the fourth floor of the west block. To be honest, it's amazing that anyone finds it at all, not just because the hospital is such an enormous rabbit warren of a building, but also because - if their track record with me is anything to go by - they don't take very much trouble to inform anyone that they actually have an appointment. I received notice of my first appointment with the PIU via a phonecall from one of the nurses telling me that it was, in fact, the day before. Did I not receive the letter? I checked the address they had for me. It was fine. OK. They then tried to set up another appointment, but I was at Glastonbury. By now they had me down as a non-attender (I'm not sure they believed me when I told them that I hadn't received the appointment in the post), so they rang me to inform me of the dates. Just as well, really, as I didn't get that appointment either. I checked the address again, but it still seemed to be correct. Third time lucky, and in spite of another missing letter, a phone call ensured that this time I was actually going to turn up.

I was scheduled to have an Evoked Potentials test and a Lumbar Puncture. The EP would take about two hours, apparently, and the LP about 20 minutes, although I would then be obliged to lie flat for at least an hour afterwards. OK, let's just get this over with, shall we?

The Evoked Potentials test was something of a mystery to me. I knew it was something to do with using electrical signals to try to measure the damage to my nervous system, but I had no idea how it actually worked. Essentially, they measure your head (mine's massive, apparently), scrub some conducting gel onto some carefully marked spots on your skull and attach some electrodes. They then do the same with the back of each knee. You are attached to some sort of monitoring device, and then a nurse holds another electrode to a spot just below the ankle bone and they switch on the power. Electrical pulses are then thumped through your body, hard enough to make your big toe twitch rhythmically and to make you feel pretty uncomfortable. The aim of the exercise, apparently, is to measure the speed of the transmission of each pulse to my knee and then onwards to the brain. They then repeat the whole exercise for the other leg. The measurements recorded on the machine will now be compared with the average for someone of my height, and they will try to determine how much damage has been done to my nervous system. It didn't hurt, exactly, but it was a very strange sensation indeed; just about on the edge of bearable. Still, it didn't last too long and was all over in less than an hour, producing some interesting looking graphs that mean absolutely nothing to me. I'm sure someone will know what they mean....

Where the EP was a bit of an unknown quantity, I had a pretty fair idea of what a Lumbar Puncture was: they take a whacking great big needle, shove it between the vertebrae of your lumbar spine and drain some cerebrospinal fluid for analysis. I'm not squeamish about these things, but I do know that there can occasionally be serious complications arising from a lumbar puncture, and the leaflet they gave me before we started gave me a momentary pause for thought: the needle can damage nerves, causing shooting pains; it can hit a blood vessel, causing bleeding leading to brainstem compression and perhaps death; there is a risk of infection and meningitis..... hmmm. Luckily, I had my back to the doctor as she inserted the apparently huge needle into my spine and so I didn't see anything. Thanks to local anesthetic, I didn't really feel anything either, apart from a bit of pushing. C. tells me that the giant needle they used actually had a tap attached to it, the sort you see on a beer barrel, and once it was firmly lodged into my spinal column, it was used to fill several bottles with my spinal fluid for analysis.

It's a reasonably routine procedure, so they tell me, something that is carried out many times a day in this unit, but that doesn't make it straightforward. According to C, my doctor's face was a picture of focus and concentration as she worked on me. Good - when we're talking about a big needle being put into my spinal cord, frankly I'm to hear it! I can't say that the whole procedure was exactly comfortable, but neither was it especially uncomfortable, and the worst thing about it was the thought of that needle shoved into my back. Apparently, so the doctor told me, I was one of the least complicated LP's she'd done. Least complicated: an interesting turn of phrase, I thought. Apparently it's good that I am slim and have a flexible spine, as this makes it much easier to find the right spot and to slide the needle between vertebrae without too much trouble. Hooray for me - if you have to have a lumbar puncture, it's probably as well to be at the simpler end of the scale and to make it as easy as possible for your doctor, eh? A quick blood sample, and all that remained was to lie flat on my back for an hour and to drink plenty of fluid to try to ward off the apparently killer headache you can get as a result of the lowering of your CSF pressure. Easier said than done when you desperately need a pee, but I managed.

So, some 4 hours after we first arrived at the hospital, it was all over and I was free to go. The anesthetic was wearing off as I walked to the car, so I started to hobble around like an old man as the pain began to radiate from my back around my pelvic girdle, but no sign of a headache. Not yet, anyway. Lots of caffeine helps, apparently, so I've been chugging tea and coffee ever since. It's sore, but manageable.

On my way out of the hospital, I sneaked a peak at my notes. I think I now have an idea of why I'm not getting any post from them: although they keep reading my correct address back to me whenever I ask them about it, the address they have on the front of my notes is an address I haven't lived at for more than five years. Oh well, as long as they're good at the really important stuff involving really big needles and my spinal cord, eh?

Results are due in about three weeks time. I'm not expecting any great revelations as they've already told me I have MS, so what more do I really need to know?

Interesting times. Circumstances are turning me into quite the stoic.


  1. personally I'd have taken a quick marker pen and changed that front-of-file address. And I know what you mean about QMC communication... *rolls eyes in despair*

  2. Just reading this post made me feel squeamish - you sound like you're being very brave! RH had meningitis as a child and says he still has nightmares about the lumbar puncture even now. (He was six though, so possibly not quite as brave a boy as you.)

  3. amazed you got away with a sneaky peek.... last time I was in the ozzy (for summat trivial) I got a right bollocking for trying to look at my own notes. hope the results tell you something in English - even if it's what you already knew.