One Week

Today marks a week until I'm undergoing my fourth spinal surgery.  I  recently noted over on the Chiari & Syringomyelia Facebook group (http://on.fb.me/Nh9alI) that I had been having very few dizzy spells recently and that my fitness has been getting better - I ran a very comfortable 8 kilometres last week and will try and do a 10k run before I go to hospital.

Despite that upside, my hands have been very problematic lately.  My right hand always tends to get worse with the cold, clawing up and allowing very little movement.  This combined with the decreasing strength and sensation in my left hand is making a lot of things very hard.  Zippers and buttons are very unmanagable, and my typing is suffering when I neglect to wear my wrist brace.

All this serve to remind me that the operation is worthwhile.  While I'm not looking forward to my time in hospital or the recovery, I am looking forward to seeing what impact it will have had on my health afterwards.  I'm not nervous at all, I'm starting to feel an old hand at this now - my major concern is probably more around how nervous and worried my wife will be!

Here's hoping for a safe hospital stay and a speedy recovery.

May The Fourth Be With You

In July I'll be having a fourth operation on my neck.  In the time between visits to the neurosurgeon he decided on a slight change of approach, only inserting the shunt near the base of my brain.  He felt that if that shunt did the job, the one he'd proposed lower in the spine wouldn't be required.  He showed some videos of a similar procedure being performed, it was pretty interesting to see what it would be like and helped to get a better feel for what would take place.  It also looks my current scar, which runs just up past my collar, will be extended a lot further up my neck and onto my head and will be a lot more prominent.  This doesn't bother me too much - I don't have to see it!

As I've found is typical with these  things, the doctors aren't very willing to promise too much with regards to any positive results, and given this is my fourth operation and all of the issues I've had so far it was more of the same here.   As I've been having a steady decline in my hand functions and continuing issues with my balance and dizzy spells, I felt that it was worthwhile having the operation despite the possibility it wouldn't have a positive result, or even halt the progression of my illness.  I'd hate to look back and regret not having done everything possible to try and get the best outcomes for my health.

Now it's time to try and get as fit and healthy as possible prior to the operation so that my recovery is as short as possible.  I'd really like to build up to a 10k run beforehand, but given the time frame and my current fitness levels I think I'll have to set the bar a little lower.

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.

Shouldering the Burden

In the ongoing effort to improve my running, during the week I visited my physio. He filmed me walking and running, and we then reviewed the footage to see where I had problems.
When I was walking, my gait was OK. The physio could see where the hip exercises I had been doing were helping, and I was generally pretty balanced. Moving into a jog though, and the issues started to become apparent. I was dropping in my hips, so that rather using momentum and swinging my legs through to run, I was forced to push up on every step, greatly increasing the effort required. I was also carrying my right arm very low. However, it was when I tried to push into a slightly faster run that the extent of how many deficits I have became clear.
Rather than using my arms to rotate and counter-rotate my torso to assist in running, my right shoulder protracts and I don't counter-rotate. This throws my whole gait out of whack, so now it looks like I've got to get back to working on my shoulder as well as my core, hip and glutes. There's a long way to go yet.

Master Splint-er

On Tuesday I returned to the hand surgeon, this visit marked 4 months since the operation. At first he was a bit worried that I'd made no progress, but on further investigation he realised that I was weaker than he'd expected, and things were working, just not at the level he expected. Apparently when undergoing tendon transfer operations the muscles usually weaken, but due to my condition they weakened more than normal. As such, what is typically a 6 month recovery is likely to take me twice as long.
He did seem to think I had some improved strength in my thumb and tricep, which are related to the same nerve path, so maybe something is healing back towards the source of the problem as well.
There was some more good news though: I don't need to go back to see him or the OT for another two months. That'll save some money. Even better news though is that I don't need to wear the splint. It was getting pretty cumbersome and annoying, so I'm glad to see the back of it. The first thing I noticed though was that without it I was having problems typing, so now I'm back to wearing my old wrist brace while I type.

Hip-ster

Given I've been seeing a musculo skeletal physiotherapist for about a month now it seems like a good time for an update on my efforts to resolve the problem of my foot dragging when I jog.

I've been doing a lot of exercises to try and strengthen some of the smaller muscles in my hips, core and buttocks. I've done a few sessions with an ultrasound to identify which muscles are working and which aren't. It's interesting to the complex interplay of muscles on screen as you perform small movements, and how slight changes in position have considerable changes in the muscles being used.

As it stands, I have several deficits in my right side which I'm overcoming by overcompensating with my hip flexor and obliques. Thinking on it, it makes me realise areas other than running which I've been impacted, such as getting in and out of cars and standing up without swinging into it.

So far I've noticed a little improvement - standing up is a lot easier, and I'm getting good feedback from the physio. How about the acid test of running? Unfortunately I've been pretty bad at keeping up with my running lately. I've only been going for a few short runs each week, although on these I've been able to run more than shuffle and pick my speed up. It will be interesting to see how much more I can improve.