Friday, 21 September 2012


Well, it's been a long time between blog posts.  I'm now a little over 9 weeks post-op and have been at a reasonably stable state for the last few weeks.
As per my previous post, I was struggling with mobility for a while.  I didn't feel at all fluid while walking, and it took quite some time before I felt I could walk freely.  I'm now fine walking (well, as fine as I was pre-op), but haven't gone back to running yet.  The main reason for that is I'm still suffering from my "dizzy spells".  The symptoms are a lot broader than dizziness, and also include dark vision, ringing ears, feeling like I'm falling, spasming arms/legs and pins and needles in my arms.  I usually get a combination of these (very rarely all), and typically when I first get up in the morning.  For example, this morning I was lucky and wasn't very dizzy, but my vision was quite dark and I struggled to butter my toast because I couldn't see it properly.  The concerning thing is that I'm getting my spells with greater frequency (more days, more coverage throughout the day) and intensity (stronger symptoms) since my operation.  The other post-op issue I'm having is with the strength and movement of my right hand.  I'm about a 50/50 prospect of being able to button my shirt at the moment, my wife has been having to help me dress a lot more often than I'd like.
Because of these symptoms (mostly the hand I believe) my neurosurgeon sent me for my post-op MRI four weeks earlier than he typically would.  He seemed pretty happy with the results - it showed that the technical/structural aspects of the operation had been successful.  He believed my syrinx had collapsed a little, but hadn't completely collapsed due to the scar tissue holding it open.  He didn't seem overly concerned, and asked me to come back in three months.  Hopefully I get some improvement in that time.

There were a few other interesting aspects of my recovery worth noting.  About 5 or 6 weeks post-op I tried having a glass of wine.  Within a few minutes I was having a very strong spell, and not long after I got really tired and slept for about 10 hours.  The next few times I tried having a drink the same thing happened so I held off for a few weeks, and then had more success.  Now it seems to be a 50/50 proposition as to whether alcohol will floor me or not.  The other interesting thing was my weight.  For the first 5 or 6 weeks post-op I was losing weight unless I consciously ate more food / higher energy food.  I thought it was great at the time and was having pastries every morning and dessert every night.  Now things are back to normal and given I'm not running I'm starting to put some weight on.

Today I've also had my first post-op physio visit.  I get a knot of muscle on the right hand side of my neck where all of the weak muscles and postural issues combine.  It's been pretty sore for the last few weeks as I've spent more time driving and sitting at a desk, so it was good to get some massage to help, although I'm pretty sore now though!

This is where the patience and optimisim have to kick in.  I need to remember that just because I was running 6 weeks after my second last operation, it's not going to be the same for this one.  It's a different part of my spine/brain.  I'm older.  So hopefully the dizzy spells start dropping off, my hand picks up and life can get a little closer to normal (whatever that is).

Tuesday, 31 July 2012

Ups and Downs

Two weeks ago I went into hospital for my fourth spinal surgery.  I checked in at 2pm the day before the operation; and given they only needed to do a chest x-ray, take some blood and give me an ECG meant it was a long, boring afternoon.  Wednesday morning they took me to the operating theatre pretty early, and 5 hours later I woke up in ICU (not recover) feeling pretty good.  Unfortunately not long after I started feeling some negative side effects.  First, my legs and abdomen started spasming and my teeth started chattering.  They gave me some pain medication for this and covered me with some blankets which seemed to help, but then my temperature rose and my blood pressure spiked.  They gave me something for my blood pressure, but it then dropped quite low.  After that things settled down a bit, and I had a typical restless night in ICU.
On Thursday I experienced doctors doing rounds for the first time.  It was interesting to see the doctors trying to assess me just based on my symptoms.  After this I had improved enough to go back to the ward, which led to what is always the most unpleasant part of leaving ICU:  removing the catheter.  I just shuddered typing that!  Unfortunately Thursday was another unpleasant night.  I developed a fever, with my legs spasming again and was having really strange feverish dreams.  I was also getting a lot of pain in my hips, hamstrings and backside.  Worst of all, I started getting double vision as well so they sent me for a CT and x-ray.  Fortunately everything was clear and by morning I felt a lot better.
Friday was a lot less eventful:  I was able to get up and walk again, and despite some slight dizzy spells getting up I was starting to feel a lot better.  Saturday and Sunday were similar - I started walking more and further, and on the whole was feeling pretty well.  Unfortunately the pains in my legs and backside shifted to an intense shooting pain in my tailbone.  This was affecting my walking when I wasn't on painkillers.  The doctors let me know it was sciatica caused by blood from the operation in my cerebro-spinal fluid, and this would take 2-3 weeks to move through.  Ouch!
On Monday they let me know I could go home when I felt comfortable doing so.  Unfortunately Tuesday was the only day no-one could pick me up, so I was stuck in there until Wednesday.  I felt great on Tuesday - being stuck in hospital when you feel OK is a terrible feeling.
Unfortunately my return to the real world wasn' particularly kind to me.  I was quite sore after the hour in the car to get home.  After a bit of relaxing I decided to try going for a walk as I hadn't been outside for a week.  This was when I realised that walking on an uneven, hard footpath was a lot harder than on the carpeted floors of the hospital.  I was very slow and had to watch my feet and concentrate very hard.  On top of this, if I took a misstep I would get a jarring pain in my chest.  Also, the pain moved out of my tailbone and into my backside and hamstrings.  Walking was not fun.  Even worse though, the mild dizzy spells I was having in hospital started increasing in frequency and intensity.  This has been on and off since - just when I think I'm having a good day and turned a corner the next day I have a shocker.  Yesterday was particularly bad.  Today has been pretty good.  Here's hoping the frequency of good days starts to outstrip that of bad days!

One last thing to note:  this was the first operation where they used staples rather than internal stitching.  I had a bit of oozing from the wound over the first few days, but they gave me a few stitches which stopped it.  This was a great result as I'd had issues with inflammation and infection with my previous two operations.
Here's a picture of the wound on the Saturday following the operation - I'm still amazed at how healthy it looks (ignoring the 30 staples!).

Wednesday, 11 July 2012

One Week

Today marks a week until I'm undergoing my fourth spinal surgery.  I  recently noted over on the Chiari & Syringomyelia Facebook group ( 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.

Sunday, 3 June 2012

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.

Saturday, 24 March 2012

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.

Thursday, 22 March 2012


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.

Saturday, 27 August 2011

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.