Where My Head Is At…

Ack, it’s a hard one? How personal is too much? To share health-related stuff or not? Nobody want’s to read a depressing blog post, but also health-stuff is a big part of whats going on in my life – creative and otherwise – just now…

I’m just back from a couple of hospital visits – one (under blue light) to my local hospital, and one to the nearest Neuro Sciences Unit. As you’ll know if you read a previous post, I have syringomyelia, a condition where a fluid filled cyst forms inside the spinal cord. These cysts can sit there merrily causing no bother, or start to cause neurological issues. Mine was possibly due to a car accident around 8 years ago and  discovered only in the last year, when it had started to cause me issues with balance, walking and gave me a hand tremor, amongst other symptoms.

In March this year I had a shunt (basically a tiny outlet pipe) put into my spine to drain the cyst and hopefully cure some or all of my symptoms. The great news is that the shunt has been a huge success, scans show the syrinx has almost entirely disappeared! Most of the neurological issues it was causing have been vastly improved, which along with some physiotherapy (and aside from a little nerve damage to one leg caused by the op’ itself) means I’m in much in much better shape.

On the down side, I’ve had a history of mild to very severe headaches since the shunt was put in, and I’ve now had it confirmed that the shunt is ‘overdraining’.

The brain sits protected inside the skull in a lovely cushion of watery liquid called Cerebrospinal fluid (CSF). The fluid also flows down through the middle of the spinal cord along a tiny, hair-width tube, and also around the spinal cord.

If you’ve ever had a lumbar puncture procedure, CSF is what they have collected from around your spine to test. Likewise, if you’ve had spinal anaesthesia (epidural), such as during childbirth, the anaesthetic is injected into the CSF around the spine and circulated up to the brain.

For me the shunt is working excellently to keep the syrinx shrunken and from re-forming, but it’s draining out too much CSF and leaving my brain not properly supported and giving me low CSF headaches. Essentially what I have is  a saggy brain.

I like the term ‘saggy brain’ as it’s friendly, as it makes me think of grannies knitting and mashed potato – rather than a fairly serious neurological condition. 

This week I’ve chatted through lots of options with the Consultant… One idea is to have the shunt blocked off – but it’s very likely then that the syrinx will form again over time. Another option is to fit a different type of shunt with an adjustable valve, but there’s no promise that this will be any easier to control and get set up right. I could have a different type of shunt where the fluid drains into the spinal cord area (subarachnoid shunt) instead of into my chest cavity (the type I have, a  Syringopleural shunt) but this carries a risk of more neurological damage. I could also have a procedure where a little of the bottom of my skull is removed to make more spare for my sagging brain – but this has a long recovery and is a very serious operation.

In the end I have opted to take a cautious approach and wait and see… There’s some hope that in the medium to long term the headaches may improve as scarring occurs and my body adjusts post-operation. In the intervening months and years though I’ll have to learn to live around the headaches and other symptoms. If it gets too tough, I can opt to go in and have the shunt blocked (and risk the repercussions from that).

So what does this mean for life – and work? I’ll have to take a more cautious and pro-active approach to managing my workload and schedule. Possibly rambling up hillsides with camera or painting kit are out for a bit. I’m not one to be held back though… Adapting is key!

My next painting project, I have decided, is unlikely to be based around the Scottish Highland Landscape (grand landscapes, rolling hills, transient weather, open vistas, etc) as I had planned. Instead I think I’m going to tackle something closer to home – the place where I live and have called my home for 12 years – Tain (Ross-shire, Highlands of Scotland).

I feel it’s an interesting time for me to investigate the area in a visual form – I’ve been here long enough for things to become familiar, but I’m also still enough of a new-comer to see things with fresh eyes. It also means practically being able to work around pain and tiredness with little travelling and a bed near by.