S-Hunting for Answers

I'm back to using really bad puns in my blog post titles, and this one offers a big clue to what happened at yesterday's appointment with the neurosurgeon.

The last MRI scan I had shows that below where my last shunt went in the syrinx seems to be reasonably collapsed and under control. However, above the shunt it still appears distended. Furthermore, there's also another point causing pressure right at the top of my spine near the base of my brain.

What was really interesting though was the Cerebro-Spinal Fluid (CSF) flow. The MRI at Macquarie University is able to capture the flow of CSF, and I could clearly see the upper part of the syrinx pulsing along with my heartbeat. It's actually a bit eerie. There was a risk that the titanium in my neck would interfere with some of the imaging, but apart from some black squiggly lines it didn't seem to have caused too many issues.

Interesting aspects aside, I've still got a worsening of symptoms to deal with, and two potential parts of the syrinx which could be contributing. The strategy would be to insert a sub-arachnoid shunt similar to my current one a little further up in the syrinx where the bulging is happening, and to release a membrane at the very high point which should relive pressure, and also place a shunt there for a grand total of three shunts in my neck. Apparently, there are is a slight irregularity in the shape of my skull and there's also some opportunity to remove a little bone to help make some space and remove further pressure. Going in, I had been very concerned he would recommend a syringo-pleural shunt or a syringo-peritoneal shunt, which from my understanding would have a much higher impact and recovery time, so it was somewhat calming to find it would be a procedure similar to one I'd previously undergone and could base my expectations of impact and recovery on.

I haven't decided if I'll go ahead with it yet. There's always a balance between risk and reward with these things, and given my experiences so far the rewards can be very slim indeed. On the flip side, it's hard to contemplate not doing something when there's an option available, and when you run the risk of further negative side effects through inaction. In the meantime, I have the much higher priorities of my wedding and honeymoon, and I can get back to worrying about my health when they're done.

Return

Well, it's been a long time between posts. In my last post, over 6 months ago, I was positive about my return to running and the progress I was making. There have been a lot of ups and downs since.

Following my positivity over running I started going backwards - really struggling with even short runs. It was very depressing and several times I contemplated giving up. I dropped my distance so I was doing only a few short (3k) runs a week and then slowly built my way back up to 10 kilometres and further. Unfortunately, in January just as I was really starting to consistently manage my long runs I hit another wall and ended up back doing mid-distance runs at best. Where I was doing at least one 10k+ run a week, I now haven't completed one in the last month.

With regards to my wrist, I recently saw the surgeon again for a 12 month follow up. He seemed pretty happy with how I'd progressed. I can't say I share his view - I feel that a year on I've had little to no improvement in my function - if anything it's a little worse. I know I had to try it, but it can be very disappointing when you're hopes are raised only to find you've achieved nothing. I'm still doing the exercises, but sometimes I wonder why.

I've also had a few really bad stints of muscle pain in my neck. I get a knot in the muscle on the side of my neck so large it's visible. It's very painful, and I've been seeing a physiotherapist to help with it. Luckily I've got really good physio coverage with my current employer, so it's not costing anything. The knot occurs when I spend a lot of time driving and when I don't sit correctly at a desk, so I have to be pretty careful with how I carry myself when I do both of these things - long car trips are pretty much guaranteed to set me off.

Finally though, the big issue: my syringomyelia. Over the last 6 months I noticed I was having a few issues which were probably attributable to my syringomyelia: I was losing strength and sensation in my left (good) hand. My dizzy spells were coming more frequently, with more "heavy" spells. I also had two new symptoms, or at least I noticed them for the first time - I was having issues with bladder control and my temperature was soaring. This last was a strange one - I'd find myself feeling a bit odd, perhaps a bit cranky or irritable and my partner would notice my skin was boiling. If I caught it I'd take a cold shower and would feel better, but it was often hard for me to self identify that there was a problem.

On the back of these issues I went and had some MRIs and met with my neurosurgeon. He wasn't 100% sure what was causing the problem, but thought it may be due to fluid from the syrinx pooling in the dural sac and putting pressure on my spinal cord from the outside. He referred me to another neurosurgeon specialising in syringomyelia who sent me for some more MRIs (these ones which could potentially see the flow of fluid, but might not be able to if all the titanium in my neck interfered with the scan). After falling asleep in the MRI tube again I'm due to go back to find out the results tomorrow. I'm not sure what to hope for - a clear diagnosis may require surgery, or I may be stuck just managing symptoms.

Finally, just to top things off I'm getting married in a little over a week. I'm such a lucky man to have someone who will share the burden of this illness with me.