Location

It's been a while between posts as life has been pretty hectic. I've been travelling a lot for work, and have just moved in with my beautiful girlfriend. Unfortunately, I think I overdid it a bit. I tried to do to much packing and moving on my own, and this combined with the travel meant I went through a period where I was stressed, exhausted and disappointed in my ability to do more for myself.
Moving things really bought home for me how limited my ability to grasp and carry things has become. Boxes that should have been easy to carry were instead awkward burdens, lots of things got dropped and my hand and arm would quickly tire, further reducing my ability to carry anything. On top of this, I was finding that I was wearing out very quickly. Carrying a few loads of things from the car would require a rest; one night I had to lay down for half an hour after unpacking some books.
To make matters worse, despite knowing I (desperately) needed help some part of my male brain was still reluctant to do so, despite driving myself into dizzy spells and feeling like I was going to collapse.

Moving has also made me consider my location, and how there must be other sufferers of Syringomyelia nearby. Now that I'm living in Sydney, I'd expect there to be 300-350 other sufferers nearby (assuming an 8 in 100,000 incidence rate). In Wollongong (where I moved from), I could expect somewhere between 15 and 30. None of them seem to have any form of footprint on the web though - searching on Syringomyelia and Sydney (or Wollongong) and refining terms doesn't seem to yield any results. I wonder if there is anyone in Sydney (or Wollongong for that matter) discussing their Syringomyelia online?

Finally, I'm off to the hand surgeon again next Tuesday. It'll be interesting to see what he says. At the moment I'm a bit pessimistic that he can help, but will try and turn that around over the next few days.

Thinking

WARNING: This post is likely to be more philosophical and sentimental than those preceding it, and will also include a lot less bad puns.
Lately I've been contemplating my illness, the complications it has created in my life, and how I handle them. Given I've been suffering the effects in one form or another for over 10 years now, I've come to the realisation that I've been very poor at seeking and accepting help. I think some of this is tied to being a young man (renowned for their reluctance to visit doctors), but also to my very masculinity - the crazy idea that you're "weak" for accepting or asking for help. I think it's a little silly that in this modern age I feel diminished by having someone (especially my girlfriend) carry something heavy for me or help me with a task that requires some dexterity (I haven't been able to do up my own top button for about 5 years now. No ties at work!). Yet, despite logic telling me I should be OK with it, I still feel embarrassed, frustrated and even emasculated when accepting help from others.
So what's the cause? Australian culture? Male culture? The idiosyncrasies of my particular personality?
Treading this line of thought further, I start playing what-if, a perilous game indeed. What if I'd sought help earlier? Would my hand function be better? What if I'd sought second opinions along the way? What if I'd asked about alternatives treatments? The what-if game then leads to the future: Will my hand function continue to deteriorate? What will my health be like in 10 years? 20? If I have kids, how effective will I be in caring for them?

I have a tendency to over-think things, and often have troubles getting to sleep because I can't switch off the flow of thought. This one has been keeping me awake lately - hopefully by writing down some of my thoughts they'll clear my mind.

Sensitive New Age Guy

On Friday I visited my OT to undergo a sensitivity testy and to get a new brace made to try and help me with my hand function. During a sensitivity test, the OT has you close your eyes, then touches your hand with progressively finer mono-filaments. By saying "yes" when you feel something, they can identify the level of sensitivity in your hands. I was quite surprised by my results - I had an expectation that my right hand would be quite bad, and that my left hand would be mostly better apart from the tip of my index finger and thumb, where I've had issues with sensitivity since my operation in January.
The actual results were that I'm missing most sensation on the side of my left hand opposite the thumb (i.e. the pinky, ring and middle fingers), with a slight improvement for the index finger and thumb, which are hypersensitive in the tips - the cause for the uncomfortable sensation when I use them. My right hand, while not great, is pretty consistent and I have better sensation than my left.
So why the discrepancy between my expectation and the results? I have a few theories as to why this is the case. The first is that my right hand was the first to suffer from my condition, and for a quite a while I suffered from uncomfortable sensations when using it. The next is that I don't use my right hand as much - due to the clawing and lack of strength, I simply don't touch as much with it. Following from that is I don't tend to use the "outside" fingers of my left hand as much, and therefore don't tend to notice the lack of sensation.
It was an interesting exercise, hopefully it proves useful for the hand surgeon when I return to his offices in November.
I also had a "figure 8" brace made up. This brace loops around my palm and the back of my fingers, and is intended to stop my fingers hyper extending when I bend them in to my palm - when I normally form a fist, my fingers now bend from their base, rather than the tips first. This makes grasping things quite hard, and things like pinching nearly impossible. Hopefully the brace helps with this, although I've found while using it so far that it makes driving and typing harder, so I'm not sure how much use I'll get out of it.

I'd also just like to mention the great forums I've recently discovered at asap.org (http://www.asap.org/forum/) - these forums are full of fellow Syringomyelia and Chiari sufferers, and it's reassuring to see there are others out there with similar problems to myself who I can ask for advice, help and support. Hopefully I can also offer some assistance to others experiencing some of the difficulties I'm facing.

What do you want?

One thing I neglected in yesterday's post was a question the doctor asked me which I struggled to answer. The question was "What do you want to get out of this?"
I found it hard to answer beyond a nebulous "for my hand to work better". After some fumbling, I expanded to "for my fingers not to be so clawed". On further contemplation (I've spent a lot of time travelling over the past day), I thought of another question the second doctor asked: "Do you have trouble dressing?" Considering the two together, I realised that my trouble answering the first question lay in that I was considering what changes I wanted to my hand, rather than the changes I wanted to the functions I can perform with it.
So, with this in mind, here's my current list of things I'd like to be able to do well/better/again (in decreasing order of importance):

• Pull things out of my pocket
• Button a shirt (including the top button)
• Open a door
• Touch Type
• Shake hands
• Carry a coffee/mug
• Tie shoe laces
• Carry 3 schooners
• Hold a pen

Hope

"Where there is life, there is hope."

Today, not for the first time, I had a doctor use that fateful term in reference to me: "Interesting". It would appear that the particular combination of weaknesses and (comparative) strengths in my right arm presents some food for thought for those medical professionals who specialise in the hand.
The first doctor I met today, just after greeting me and welcoming me into his office, said "Your handshake tells me a lot of the story". After nearly an hour of describing my history and issues, then moving my arm, wrist, hand, fingers and thumbs in every conceivable direction I then went to see a second doctor to repeat the process.
The prognosis? Well, they confirmed that my wrist flexors aren't working and the extensors are over active. This is causing issues for the rest of the tendons in my hand and wrist. So what can be done about it? Well, for starters I go back to my OT for a sensitivity study (the sense of touch in my hands, not my emotions) and to try a different style of splint/brace to help me with the clawing in my fingers. Then, in a couple of months I go back to see the hand specialist - given the variability I've had with strength in my triceps, he'd like to confer with colleagues to give the nerves time to "settle down".
When I go back we'll discuss some of the different treatment options, each of which have different risk/reward profiles. These options range from fusion (I didn't like the sound of that) to hooking my brachial muscle up to a different tendon - it would appear that whilst my brachial muscle is working, but isn't actually connected to anything functional and is therefore quite useless.
As my case is "interesting", he also discussed bringing me in to a meeting of specialists, where I'd be the subject of a round table discussion. I think it'd be a pretty interesting experience to be a live case study in that sort of scenario.

It was a good experience in that while I visited a surgeon, he wasn't in a rush to cut me open, and was quite concerned the result wouldn't be positive if he did - there are pretty much two type sof muscles in my arm: dead and weak, and surgery runs the risk of making the weak ones weaker. Having said that, for the first time in a while there are multiple potential treatments, some of which may make things better rather simply preventing them from getting worse. This inspires some hope in me.

The wait is over

Yesterday I saw my neurosurgeon. I was told that there are no structural issues in my spine: the nerve exits are clear and there are no bone spurs. So, as it turns out, my current issues are just the evolving complications of syringomyelia. Apparently I can expect peaks and troughs of these symptoms; given that my right hand is currently little more than a club I'm hoping I'm at the depths of a trough at the moment.
Now my main hope is that when I visit the hand and wrist specialist next month he can offer me some sort of help, otherwise I'm reduced to hoping for improvement.

More in early September after I see the next doctor...

Update

What an inspired post title!
Last Friday I went off to see my neurosurgeon. Looking at my existing scans he had three theories for what was causing my current symptoms:

1. I may have a bone spur around C6/7 putting pressure on the nerve emerging from the spinal cord there
2. My cyst is only partially deflated, and is putting pressure on the spinal cord there
3. It's just ongoing degeneration

I have a strange feeling it's #1, but I'm not sure why. At any rate, I went in for a dose of radiation (CT scan) this morning so he can get a better look at how everything is hanging together at the moment. Unfortunately, I was not bitten by any irradiated spiders while I was there. Also, CT scans are way quicker than MRI. I was in and out of the place in short order - it took longer for them to bill me than it did for me to register, wait, and get scanned.
The lady told me the results should be back by Wednesday or Thursday, so I'm not really expecting to hear anything until next week.
The waiting continues...