Saturday, 19 July 2014

Pain (…and more)

Pain is an unseen disability.  It can rob you of your life! 
 Yet nobody will know...

It takes a second…….Furnace purrs into consciousness..  Streetlight filters through  fluttering curtains,  Neon numbers tell me its 3:12 am.  Awake…..and there it is.  Years have passed since my injury but every waking moment is greeted by pain..  It will be there tomorrow, the next day, the next year…..and for the rest of my life.  Not a happy prospect.  Not when you unintentionally find yourself praying for a shortened lifespan..

Neurogenic pain.  Intensely burning pins & needles from the knees down.  Periodic sensations such as the calves begin to swell up to twice their size and are filled with swarms of angry bees, stingers ramming the insides, trying to get out,  Instantaneous shocks that may be as minor as a repeated pin-prick to the thigh or as startling as an instantaneous electrical shock to a toe -every bit as intense as if you had stuck your appendage into a 120V electrical socket.  Such a startling reflex brings stares from those around.  What happens in your spine - at that point of injury, that suddenly decides to trigger this response?

Spasms!!, my God, spasms!!…  Just when I think I can relax and unwind from the day, my right leg, or left hip might decide to start jumping.  (funny, never together - must be some biological basis for that)  It starts off slow, the tension can be felt building - then it fires!  A jerk…followed by another, and another, and another…..on and on often for hours.  Leg flops around on the bed like a fish that has just been landed!  So strong that any individual spasm can lift me off the bed.  If my leg would be tied down, I swear the physical action could snap a bone.  My leg may involuntarily and repeatedly raise up off the bed a foot or more, over and over and over again until once again, inexplicably, it slows and stops.  A change of position, application of pressure, exercise, a massage -sometimes they seem to help but most often not.  The spasms mockingly seem to come on more frequently in the evening, as I said, just when you think you can relax.  What is it that triggers this?  Body chemistry?  Is it a neurotransmitter that has accumulated and now “drips” repeatedly, making contact with the receptor below?  Is it some rogue electrical signal, a spark that discharges across a junction repeatedly until that particular biological battery runs dry?  Is it the body trying to pump blood - contracting and relaxing muscles in order to get blood coursing through the legs? Yet as I said, exercise doesn’t seem to discourage these spasms.  Is there some biological purpose to the spasms or is it like a power transmission wire that has torn free during a storm and now lies on wet pavement, dancing and shimmering until power is cut?

Tone - that incredible tightness that no amount of stretching and exercise can counter.  Always stiff from the level of my injury in my back, to my toes.  How much is pure tone and how much may be contractures or adhesions, I can’t tell.  Tone always quickly returns soon after stretching or exercising.  Some elastic bands, you can stretch them out repeatedly but when you put them down on a surface, you can see it tighten up a bit more -that’s tone!  I feel that my torso is wrapped in elastic material which constantly resists my twisting and turning at the waist.  A secondary, related sensation is like “the outside of my insides are glued to the inside of my outsides“.  No other real way to describe it.  Layers just don’t slide smoothly over each other, but stick and “ratchet” (stick, release, stick, release, stick, release, and on, and on…)  Creepy!!

I’ve come to the conclusion that the total inaction, due to my six months of hospital bed rest, did as much damage as the injury itself.  Tendons and ligaments may tighten or loosen due to inactivity.  Layers of skin and flesh fuse to each other, as if glued  Contractures and/or adhesions are formed making what once were two surfaces, now one.  Achilles tendons shorten and retract causing toes to point downwards.  It’s a “catch-22” situation where you have to be on your feet almost constantly to stretch them out, yet you can’t be on your feet constantly because you are paralyzed!  A runner may stretch out their Achilles by doing a few stretches braced against a wall - all that is necessary between short sedentary periods.  But for those immobilized for prolonged periods, trying to stretch out the Achilles tendon is like trying to rejuvenate dried out, cracked leather and trying to make it soft and supple once again.  All but impossible!

Of course, once the “high priests” of medicine - the doctors, have come into your room and after a quick glance up and down your chart, they’ve coldly proclaimed that you will never walk again, it becomes written in stone!  It is a fact that shall not be contested!  It would be a sacrilege to argue, to deny. From that point on, any therapy almost appears to be doled out grudgingly, as if a wasted effort, rather than “lets try everything to maximize your chances”  “Come on buddy, prove me wrong -walk”.
I seized right up with the half hearted, one hour per day, (weekends excluded) therapy I received - often administered by unsupervised students.  Aggressive therapy soon after surgery might have helped -however, there is no money in the health care system for that - and that is the bottom line.

I’ll finish this post as how I started -  a few more thoughts on pain.  Pain is subjective.  I’m not sure if there is any absolute method to measure it.  Individuals exhibit different tolerance levels to pain.  Different injuries result in different pain.  Identical injuries caused by different means might elicit different levels of pain.

How might a spinal cord injury produce pain if produced by a crushing injury, or a severing (cutting) injury, or a biological injury (bacterial infection & their toxins, as was my case.)   If at the same level, does a crushing injury cause more pain than a severing injury?  Do the unattached, severed ends of the spinal cord still cause pain?  Or where the transmission is cut rather than altered, are absolutely no signals transmitted.  Do the loose, “dangling” ends below the cut, themselves generate pain.  Something I don’t know but I’m sure some of you out there can answer.  For me, bacterial growth with the production of various toxins and enzymes, damaged my spinal cord -plus whatever damage the surgical drainage itself did to it, causes an immense amount of pain.

My neurogenic pain is constant and so intense that, as I’ve explained before, I cannot  go for more that perhaps one minute before my mind is drawn to the pain again, and then again, a minute later.  That distraction, and diversion of focus from other matters in you life, in fact robs you of your life and may even result in dangerous inattention.

My spinal cord injury created an unperceivable (so slight, not apparent to anyone else) muscular imbalance in my back, torso, or buttocks, which has resulted in tremendous sciatic nerve pain.  Not like being stuck with a knife.  Consider it this way - Get a hardwood stool with no cushion and then sit on it.  Comfy?  Now get a pebble, about an inch in diameter and place it on the hardwood chair surface directly under your hip bone (joint).  Now sit there equally balanced. Still comfy?  Now sit there for a minute. Now sit there for an hour, a day, a year….for the rest of your life…  The sciatic nerve runs along side a blood vessel and with every beat of my heart, the nerve throbs and throbs and throbs!  On bad days I squirm in my seat, however no position can release the pain. An eight plus hour workday is spent with my attention diverted to the burning leg pain and the throbbing hip.  Nothing helps, not even lying on my stomach as the throbbing continues.  The only thing about the sciatic pain is that it does fluctuate somewhat.  Some days are better than others and it seems to cycle about every third day or so.  I believe on the days that it is bad, my squirming and tensing stretches out the muscle in the hip so that it sits properly for a day or two until it once again contracts and pulls the hip ever so slightly out of alignment, resulting once more in pain.  It is always there, just some days are worse than others

No drugs, no medication, seems to help in the least, yet I continue to take them as a desperate attempt to do something.  Exercise has helped to improve on strength but has had no effect on the alignment or pain.  Live with it I’m told.

As I already mentioned, it is hard to quantitate pain -the perception between individuals and same, but different injuries,  There is the Wong-Baker Pain Scale, shown below to which individuals can point out their level.  What those faces truly capture, I’m not sure but I would say my pain would sit at level 8 on most days.

It is the knowledge that this pain will be with me day in and day out for the rest of my life, that really hurts.

Friday, 4 July 2014

Permobil M300 Poor Arm Alignment

I discussed the flimsy arms that were standard on my Permobil M300 in the previous post but I though that one more short video clip would demonstrate the issue more clearly.

For those who have not read the previous post and are unfamiliar with this issue, briefly, at the time of purchase I mentioned to the vendor that the side arms had an extensive amount of side to side play and that they seemed to be rather flimsy.  They promised that a new model of arm would be coming out shortly and would swap them out when available.  I have since learned that there were no other arm models under development and that this was a ploy to convince me to purchase the chair.  With so much lateral movement, even at the time of purchase, I found it to be unacceptable and added some of my own 'after market' washers in an attempt to stabilize the arms.  The arm when raised and released would just drop down with force and bang against the catch mechanism.  To try to add some friction, slowing the drop if the arm should slip from my grip,  I sandwiched a rubber washer between the arm and a larger diameter metal washer which extended the surface area holding the arm perpendicular to the chair chassis.  (Does that make sense?)  Check the photo below.

Permobil M300 -my aftermarket addition of washer in an attempt to stiffen the arm and reduce the lateral play. The chair was sold with arms that had a good amount of side to side movement -the service department would not address the issue,so I had too try something.  The arm mechanism comes with a leaver (top) and knurled thumb-nut (bottom) and sliding tin 'whatever' (slotted piece by left red arrow) - an overly elaborate design which serves little purpose in my view.  Its a bloody hinge!! - why make it so complicated.  What it didn't do was hold the arm steady.
The left arrow points to the rubber washer I installed to dampen the motion of the arm -so it wouldn't drop with a bang!  (now showing cracks and need replacement).  The right arrow points to the oversize metal washer I installed, sandwiching the rubber washer to the arm.  Without the large washer the arm rests against the bolt head alone, providing the attachment but very little support.

In the previous post, I tried to show the excessive side to side (lateral) play of the arm from a different angle.  What it didn't show was the misalignment of the post to the catch mechanism.  Watch and see how much the 'post' can miss the 'catch'.  While the chair is now just short of being 2 years old, the poor alignment was about the same when bought -an issue which I raised in concern.  My fault is in trusting the vendor in lying to me about replacement arms. 
The entire Permobil arm construction is flawed, from thin, prematurely cracking faux-leather (Naugahyde?) material covering the arm cushion, to the single square post holding the arm cushion to the arm mechanism, to the overly complicated hinge mechanism which allows arm wobble, to the poorly aligned multiple component arm catch and tin spring which offers "hit or miss" locking of the entire arm assembly, to no surface to which a bag or pouch can be attached to to hold personal items.  Bad, bad design!!

Sorry Permobil, I'm not buying any future wheechairs from your company!!
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