Recovery

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).

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!).

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.

Splint-ered Hopes

Today I returned to see the hand surgeon, it has been nearly 11 weeks since my operation. He was happy with how things were healing and thought I had good stability in my wrist, but now needed to work on building up the muscles and their association in my brain so that I get the full benefit. On the unfortunate side, one of my fears was realised and I have to keep my splint on. For another 7 weeks! I suppose it could be worse, but it's frustrating - it will mean I'll have had a cast or splint on for over 4 months.
I also realise that since talking about running and fitness at the start of the year I haven't returned to the subject. I've actually done reasonably well, despite a slight dip during my operation. I've recently achieved my goal of running 10k non stop, and despite being embarrassingly slow I'm proud of myself. I'm now in a bit of a holding pattern - I want to increase my distance, but haven't found/devised a program to keep building. In addition to that, I've just been to see a physiotherapist specialising in musculo-skeletal issues, who is trying to help me with my right leg, which drags a bit. Apparently both my hips are quite week, the right one more so, and this is causing my issues. I've started some exercises to try and increase my hip strength and hopefully help my leg, and therefore my running.

So, overall, quite good news on my health at the moment. My hand is coming along, I'm fit, healthy (I went for a full check up at the GP a few month ago and my results were "boringly OK") and thanks to some focussed effort on watching what I eat am the slimmest I've ever been as an adult. Now to get this splint off...

Update

Yesterday I returned to the surgeon for the 6 week follow up after my operation. The original plan was that I would get the fibreglass/goretex cast at the two week mark, then wear that for another 4 weeks. Unfortunately, things didn't go to plan.
After a few weeks of having the fibreglass cast on, I noticed some redness around the knuckle of my index finger. Closer inspection revealed that I had a sore near the edge of the cast. It turns out that when I was typing the cast would press against my hand. Given there's very little muscle in my hand, it pushed the skin up against the bone and I ended up with a pressure sore. The OT cut the cast back to try and alleviate the problem, but this only shifted it back further up my hand.
So, the remedy was to replace the cast with a splint, a moulded plastic sheet running from halfway up my fingers most of the way down my forearm. It covers the top half of my arm, and is held on with velcro scraps. I wear a "sock" under it to protect my skin. It's not as covenient as the cast, I can't get it wet and have to change the sock.
Despite this, my surgeon was very happy with how things had healed, and gave me some exercises to do. Now I go back to to the OT to get the splint straightened to a neutral position, keep doing my exercises and go back to the surgeon in 4 weeks.
The best news though? I can drive again.

Housebound

I've got to admit I've been very lax in updating this blog despite having a reasonable amount of time on my hands - not driving to work adds about an hour and a half to my day. I'm not driving to work, of course, because I'm still wearing the cast from my wrist operation at the start of April.
The operation itself went well - apparently when they cracked me open everything was as they expected it (healthy red muscle fibre where they thought it would be and sickly white where I have nerve damage) and everything moved where it needed to go. I had very little soreness, there was only one day nearly a week after the operation when I needed to use the painkillers they provided, and I suspect this was because I overextended myself.
The first two weeks were very frustrating though. I had to wear a large plaster and gauze cast to start off - they give you this split cast so that there is room for any swelling of the wound. Unfortunately, you can't get the cast wet, which meant no running and showering with a plastic bag on my arm. The running ban was particularly disappointing as I'd worked up to three 8k runs a week (I even knocked one out the night before my operation). To add insult to injury, the cast was quite heavy and bulky, so it was pretty awkward.
The good news is that after 2 weeks of the plaster cast I changed over to a goretex and fibreglass cast. This one is much slimmer, lighter and can get wet. I went out for a run the first day I got it and discovered the 2 week break had done me no favours in the fitness department, I think it will take me a few more weeks even now to get back to where I was.
As good as the new cast is though, my wrist is still set at a very awkward angle (it's curled in at about 45 degrees) which is making a lot of common tasks pretty tough. As usual, I need a hand with my hand. Today marks three weeks until I go back to the surgeon to have my cast removed and start therapy, I'm looking forward to it.

Tendon Transfer

This is just a short post to note that on Thursday I'll be having the operation on my wrist I mentioned earlier. I'm not really nervous - it's pretty minor compared to the other operations I've had (having them cut open part of you that isn't your spine helps!) - I'll only be in for day surgery.
I've also been going pretty well with my running lately - I completed Couch to 5k and am now building up to 10k. I'm running three times a week, and my last run was 8k. Hopefully being fit helps speed my recovery, and I can bounce back from the operation and get back into running pretty quickly.

Anyway, wish me luck! I'm hoping that I get a positive outcome and don't go too stir crazy while I'm stuck in the house with a cast on.

On Fitness and Cooking

In a bid to undo some of the damage (i.e. fat) wreaked on my body while travelling a lot for work last year and a somewhat indulgent holiday period, I'm currently trying to complete Couch to 5k. C25K is a nine week running program designed to take you from being unfit (the couch) to being able to run five kilometres in 30 minutes. I completed Couch to 5k after my operation at the start of 2010, but let myself fall out of the habit as the year progressed - being in Canberra in winter was most of my excuse. At the moment I'm giving it another go and am up to the seventh week, which is the first week which does not break the runs up with any walking, and last night I struggled. While grinding up a hill that felt a lot steeper than it probably was I pondered the question:
How much of my struggle was related to lack of fitness/talent, and how much to my illness?

It's a question that would be very hard to provide a quantified answer, because you're getting into the realm of "what if?" I've never been particularly fast, coordinated, or athletic. But how much do these factors influence what my peak performance could be, versus any negative factors introduced by my illness?
I know that there are definite impacts - for example, my right leg doesn't always "fire" correctly, resulting in my toe scraping the ground quite often as I walk and making it a lot more likely that I trip (I was running every other day on my recent holiday in Vietnam until I tripped and smashed my back into a post. It's still sore nearly four weeks later). Whilst I stop myself from destroying my shoes by taping up the toe with duct tape every few runs, my efficiency must be terrible. I shudder to think how my arm/shoulder movements compare with those of an athlete.
So am I just being a sook and making excuses, when in fact I should be knuckling down and pushing through it? Or should I be realistic about what I'm capable of and cut myself some slack? I'd love to be able to build up to running 5ks in twenty minutes, or completing a half marathon but wonder if the effort for me would be too great. Or am I just making excuses for myself? I can only try and find out.

Away from the world of fitness, I also need to be more self aware of my shortcomings in every day life. I really enjoy cooking, but given the lack of strength and sensation in my hands, I'm somewhat ungainly,especially when handling delicate, awkward or heavy items. As a result, my left hand at the moment is more blister than not. This used to happen a lot wit my right hand, and was one of the catalysts for my second operation. This is pretty scaring considering I didn't even notice one of my burns until a minute or so until after it happened. I'm going to have to keep reminding myself that I'm not a celebrity chef with asbestos fingers, and that asking for help is not a crime.

Hand-some

On Tuesday I went back to hand surgeon. Last time I saw him he was concerned with the variability of my symptoms (I'd just lost and recovered strength in my right tricep), so he had asked me to come back several months later. My arm has stabilised, and it appears that I've had a slight increase in the strength in my fingers. My right wrist is still shot though, with the extensor overactive and the flexor barely working. As such, the surgeon recommended that I have an operation to transfer the tendon from my brachio-radialis to the flexor carpi radialis. This would hopefully stabilise my wrist and let me get more use from my hand.
We talked about the risk involved, particularly around further degeneration of my symptoms. There's little risk of making things worse, as the brachio-radialis isn't used much (I use my biceps for most elbow flexion), and my extensors don't do a lot as it is. Normally the anaesthetist would do a nerve block for this style of operation, but as there's a slight risk of nerve damage from this they'd look to a combination of local and general anaesthetic instead.
I would have to wear a cast for 6 weeks (which precludes driving), and then undergo occupational therapy for about a year, so now I need to talk to the insurance company and my work to get things rolling. Hopefully I can have an operation sometime next year in late February or early March.
I'd really like if this helped me improve doing a few standard things like pulling my phone out of my pocket and doing up buttons, but my ideal situation would be that it lets me get back to playing touch footy with my mates - I played for years with dud fingers, so I'm pretty confident that if my wrist improves I'll be able to catch, pass and pick a ball up well enough to play.

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.