What follows is a long-winded summary of my symptoms and
improvements (if any). I write these
posts primarily for my own documentation and not so much for any interested
audience I may have acquired. ‘They are
what they are’ –please take them as such and read on if still interested.
Much of the following can be found elsewhere in my blog
however this is simply a summary of my state of recovery and or symptoms eleven
years after I first sustained my infectious injury.
I had expected to make more progress after my discharge
from the rehab hospital but sadly things haven’t changed significantly. While I was written off and offered little
expectation or encouragement by the “professionals”, I had hoped for and have
achieved much more…but sadly not enough.
I was basically told to go home, put a quilt over my lap
and live out the remainder of my days watching the sunrise and sunset from my
porch. My wife was given instructions to
set her alarm clock in order to turn me over in bed every four hours so that
the chances of developing pressure sores would be minimized.
All told, I believe the rehab hospital did as much damage
to me as did the original infection simply by such minimal treatment that it
amounted to neglect.
When my wife questioned the rehab about my receiving
further physiotherapy, they actually questioned why we should want to continue
physiotherapy after discharge. The
impression was that it would be of no use.
I simply cannot imagine any competent healthcare facility arguing
against further therapy. Though I trust
my wife implicitly, there must have been a miscommunication.
I did receive over two years of physiotherapy at the
hospital at which I was employed –three times per week. Afterwards, I joined a gym and created my
own routine on any apparatus or equipment that I found I could utilize. I feel it did help though not as much as I
had wished. After two years at the gym I
stopped going after the equipment was changed over to models which I couldn’t find
a way to use. What equipment remained
didn’t justify the membership cost.
I did return to my work as a medical technologist. I am able to stand alone and non-braced for a
short period of time and braced by my wheelchair, significantly longer. I can do much of what I could before my
injury except for walking away from the wheelchair. I had always hoped to get back to my
woodworking shop when no longer at the bottom of lengthy stairs.
While lying on my back for six months at the rehab
hospital, paralyzed from my waist down, my muscles weakened and tendons
shortened; ligaments also probably tightened.
Muscles regained much of their strength through physio &
self-directed gym work; however the tendons are another issue.
Tendons, particularly the Achilles’ tendons retracted
(shortened) so that I have little dorsiflexion (lifting my foot up at the
ankle) but have strong plantar-flexion (moving the foot down at the
ankle). As such, I can stand on the
‘balls’ of my feet –tip-toe I suppose.
As I cannot lift my foot up much at the ankle, the toes point downwards
and catch if I try to take a step using a walker. I can walk using the walker but I have to
lift my foot un-naturally high so the toe clears the floor. The gait, though awkward, is effective; I can
walk moderate distances.
Unfortunately it is a “catch-22” situation where to
stretch out the Achilles at my age would require my being on my feet for long
periods of time. My injury does not
permit me to be on my feet for long periods of time. I wished there was some sort of apparatus or
‘boot’ that could be worn early after the initial injury that would keep the
foot bent and the Achilles in the stretched position so they wouldn’t retract
and shorten. Of course, once the learned
doctor has pronounced his prognosis, no further assistance is given as doctors
are never wrong. Physio and gym therapy
has helped to a limited degree; I can feel the Achilles stretch on gym
equipment made for that purpose, but the effects are short-lived. Young developing children have very pliable
tendons but as you age they lose this quality and it is hard, if not impossible
to regain their effectiveness once retracted.
Injury Symptoms Remain:
Here are my remaining injury symptoms which remain to
give me great grief each and every day.
1. Tightness: as mentioned above, tendons and ligaments
have tightened or shortened because they have not been used as intended – over
their full range. It is my understanding
that muscles or tissues not used over their natural range may develop
‘contractures’ where the tissues or tissue layers permanently fuse to each
other. Movement may be forever
restricted unless the tissues are freed from each other surgically.
In addition to my Achilles
tendons having shortened, I suspect there is some alteration around my hips as
well as I cannot ‘do the splits’ to any great degree. I used the ‘abductor’ apparatus in the gym in
hopes of improving this but it probably helped to regains strength but not
range. This may have some bearing on my
sciatic hip pain (further below).
The other location where this
tightening is most noticeable is in my core.
I have a limited range in twisting from side to side at my waist. I suspect it feels as if I would wear one of
those corsets the Victorian ladies used to lace themselves into. The main limitation is in personal hygiene
after having used the toilet. It is
difficult for me to swivel and reach my backside therefore some inventive
methods have to be developed to accomplish this unpleasant but necessary task
if one is to preserve dignity.
In spite of constantly
twisting and turning ‘in-situ’ (real life), I have not achieved any additional
range of motion. While my muscles seem
willing to go further, the ligaments seem to hold them back resulting in pain
if I attempt to twist further. Any
improvement I get from exercises is quickly lost –as if there is a philological
mechanism preventing improvement.
2. Shocks: I suppose these are the spontaneous firing of
various nerves with the resulting Even these vary in
sensation. One feels so specific as if
someone suddenly jabbed me with the point of a pin. Without any notice a pin-pint jab can cause
me to jump (unexpected, it is usually accompanied by a yelp or expletive which
I cannot repeat here!). They may occur
anywhere below my injury site but usually from the groin to the feet. A shock as specific and isolated as a pin-prick.
Then there is what feels like
electrical shocks which I can only describe as being accompanied by a kind of
“buzz”. They kind of feel as if you
touched a 120V electrical wire for a split second. I don’t think the human body runs on A.C.
(Alternating Current), however that “buzz” I mention feels like the 60 cycles
per second alternation our electricity is transmitted with. I swear I can almost perceive the buzz as the
cycles alternate.
Finally there is a variation
of the specific electrical shock described above. It is broader, almost a wave that spreads out
over a larger area. Although they have
occurred from the groin area downward, they occur more frequently in the soles
of my feet. Again, they are a broader or
wider buzzing shock-like sensation similar to the 120 Volt shock.
All of this shock like
sensations may occur only once or they may pulse – occurring several times with
perhaps a few seconds in between each shock.
There are usually no more than five or ten shocks before they peter out. They offer no clue as to what triggers them
and they offer no warning as to when they are about to occur.
3. Sciatic
Nerve Pain: I suspect this exact
sensation is unique to my injury. My
injury appears not to be symmetrical (affecting both sides the same). Though my motion appears the same on both
sides, they symptoms differ slightly between left and right. It seems my injury has weakened my left side
such that there is pressure or stretching (which?) at the hip joint which
causes the sciatic nerve to be irritated.
I have sciatic nerve pain which at time can be tremendous and all
consuming. When at its worse there is no
escaping the pain. OTC (Over the
Counter) analgesics (pain medicines) do little to ease the pain. I have tried ‘Piriformis’ muscle stretches
which target sciatic pain to no avail. At
worse it feels as if I am sitting with my hip joint placed squarely on a hot
rock. There is no escape as the nerve
pain throbs with each heartbeat pulse whether sitting or lying on my
stomach. I said ‘all-consuming’ as it is
difficult to think of anything else but the pain when it is at its worse.
4. Neurogenic
Pain (Burning Pain): Another symptom
that can be “all-consuming” in that it is hard to think of anything else when
the pain is at its worse. In fact I
don’t believe the severity fluctuates at all.
Simply when some other discomfort becomes worse than the burning –then
your attention is not entirely focused on the burning. (To not focus on a headache, hit your fingers
hard with a hammer. The sensation is
unique –unlike anything I have experienced before so it is difficult to
describe accurately. I imagine it may
vary between individuals affected and their particular injury.
The best description of my
neurogenic pain that I can offer would be that it feels as if my limbs are
immersed in boiling bubbling soda water with the millions of very hot bubbles
continuously bursting on the inside of your limbs. There is an unpleasant “tickling” sensation
as each bubble bursts after hitting the inner surface of the skin where it
‘explodes’. Some describe the sensation
as having pants made of glass shards or perhaps the sparks from one of those
‘Christmas sparklers you light with a match.
Internal receptor sensations may be amplified so water from the shower
may feel unpleasant, causing the limb to jump.
This burning sensation is with me every hour of every day and absolutely
ruins any quality of life I may still have.
Gababpentin, Pregabalin
(Lyrica), Amitryptaline and Nortryptaline are the only drugs I know of that are
supposed to ease nerve pain. I find them
of little benefit, perhaps lowering the pain level by 5 to 10%. I “grasp at straws” and accept those drugs as
better than nothing, however they are not very effective. If they don’t do much good, then why do I
continue to take them? Well, a drowning
man will reach for a twig if it is the only thing floating around him…
5. Paralytic
Spasms: “Spasm: a sudden involuntary muscular contraction or convulsive
movement” –Webster. This is certainly
what I consider to be a spasm to be. I
believe I was given another description by my botox doctor; it was something
like ‘tightness through velocity’ as he flicked my foot at my ankle (I didn’t take notes). These absolutely destroy my life! While they can occur at any time and last for
any length of time, they usually occur
in the evenings and can last for hours.
My longest stretch of continuous spasms has been for eight consecutive hours. They started at 10:00 pm and finally subsided
around 6:00 am. You cannot get much
sleep when it feels as if some demon in your bedroom suddenly lifts your leg
off the bed and violently throws it back down –over and over and over again for
hours on end!
Usually spasms give some
warning that they are about to start and they are about to begin. The leg starts to buzz much more intensely
than which I attribute to neurogenic burning.
My calf gives the sensation that it inflates or swells outward. The sensation that it is hollow and a million
bees have bees have been let loose to bump into my skin with their stingers
out. Then comes the first spasm; a quick
and sudden jerk that at its weakest lifts my knee off the bed and at its
strongest actually throws my entire leg around the bed. Each individual spasm may also give a
half-second warning prior to the leg jumping.
It feels like a wind-up spring mechanism that drove old wind-up clocks. Wind too tightly and the spring may release
and unravel requiring you to wind it up again.
It is that last fraction of a second wind-up and release that teases me
that another spasm is about to fire. Try to get some sleep! Just try to read a book, or watch TV or do
anything when your leg is flailing around; up and down, left and right for
hours on end.
Again, my injury is not
symmetrical. Spasms on my right side
start with that creepy hollow buzzing feeling in my right calf and the spasm
seems to come from both my calf and thigh.
On my left side, the spasms come from the hip and lower back. I find it a curious clue that spasms occur on
one side or the other. Though not always
in this sequence, they usually start on my right side and then may stop or
transfer to the left side. Both sides,
thankfully (I guess) both sides don’t spasm at the same time. Probably a clue to the neurological pathway
they take.
I am taking the maximum oral
dose of the anti-spasmodic drug Baclofen. I have no longer have trust in doctors as I have been miss-diagnosed my entire life. After my experiences, I have no desire to
have a Baclofen pump surgically
inserted in my spine. I also have my
suspicions of efficacy of the drug itself.
Some length of time after I was released from the rehab hospital I was
experiencing spasms in spite of being on anti-spasmodic Baclofen. It seemed to have little effect so out of
curiosity I slowly began to lower my dosage until I was all but off the
drug. I found that the spasms continued
at about the same rate and intensity however what did change was my stiffness. I discovered that my legs seemed to pull
together and were harder to spread. My
only real observation was that there was a major change in stiffness and
tension in my limbs –spasms, not so much.
So I have to wonder what difference would pouring Baclofen juice
directly into my spine would have and what side effects would I then experience?
In my ninth year post injury I
started to get what I called “Atomic
spasms”. These spasms exploded so
quickly there was no warning as to their coming. They were so intense that it felt that the
muscles were trying to disarticulate (tear apart) the joint. They would explode to the extreme limit of
the joint’s movement and then try to go further. At their apex (highest point)
they would not release but hold, often for seconds. The results were eye-wateringly painful spasms
usually accompanied by a barrage of curse words, regardless of present company. What caused this change in the ninth year, I
can only speculate. Perhaps after
quitting the gym my muscles rebelled as the benefits painfully returned to
pre-gym status. Thankfully these Atomic
spasms have generally subsided, though not entirely.
One note on the possible
effectiveness of Baclofen: Also up to my
ninth year post injury the spasms I experienced occurred in the evening or at
night. They would run their course and
then leave me alone until the next evening.
In the ninth year I began to get the ‘atomic spasms’ –an entirely
different beast than the annoying, repetitious spasms. What I also observed was that if the annoying
spasms ran their course and stopped before bedtime, I could sleep uninterrupted
until morning. In the ninth year this
changed. I now may wake during the night
and the simple act of turning over to another side may trigger a (few) spasms
which usually however these will not continue on for hours. So, I may be wrong. The Baclofen may have some
effect on my spasms after all. The
efficacy of the drug may be wearing off after nine years of constant
usage. The body may metabolize or
circumvent the drug allowing spasms to initiate more frequently. Regardless, the majority of violent,
long-lasting spasms still occur each evening to late night. This same metabolism or circumvention of
Baclofen may account for my increased core stiffness.
So what is the exact mechanism
that fuels these spasms? Are we dealing
with an electrical pulse for it symptoms sure exhibit themselves as a
shock? Zap! Zap! Zap! Or is it the constant
drip of neurotransmitters across the gap?
Drip – Fire! Drip – Fire! Drip –
Fire! It is the closest thing to
perpetual motion than I can think of. I
could never lift my leg up and drop it down every few seconds for up to eight
hours. I suspect I would be sore and exhausted - unable to raise my leg after
fifteen minutes of exertion! Spams that
fire roughly every 6 to 10 seconds for hours on end! Urgh!!!
So nightly I wait for the
rhythmic spasms to begin causing my leg to jump and jump and jump – rarely, if
ever for minutes but usually for hours on end.
It is pure ‘hell on earth’ –worse than the paralysis itself and destroys
whatever quality of life may still remain.
At the risk of being “politically incorrect”, the perpetual spasms are
like ‘Chinese water torture’ where a victim is restrained and from a reservoir
and bamboo spout placed above their head, a single drop of water drips, drips,
drips every few seconds upon their forehead.
Such a seemingly innocuous method has the victim ready to confess any
and all secrets within a day if not hours.
I have no secrets to offer to stop this torture. It will continue perhaps daily and surely
every night for the remainder of my life.
And because of this never ending torture I have been broken and I’ve
even cursed my God now on numerous occasions.
There is and will be no salvation for me…
“I hope I feel awful tomorrow as awful would be so much better than how
I feel today”
Now, what has improved over
11 years post injury?
Because my spinal cord injury was due to an infection and
not physical trauma, the progression of my recovery may differ from other
paraplegics.
When you have an infection, the tissues respond by
swelling which physically contains the bacteria much to the site of
infection. Fluids and white blood cells
from the lymphatic system infiltrate the area in an attempt to destroy and mop
up the invading organism. The act of
swelling can have a deleterious effect on the spinal cord by exerting pressure
and perhaps reducing blood flow. The
body’s self-defense mechanism may actually aid in the damage which occurs. (The same is true for physical injuries due
to a cascade effect of substances triggered by the injury –but that is another
matter).
I believe that this response to my infection caused
additional damage to my spinal cord. I have reason to believe this as when my wife
first saw me post-surgery, she said I was tremendously bloated and
swollen. She also said I could move my
feet at that time which I could no longer do days later. To continue, I became infected sometime in April and it was
only in early January of the following year that I believe that the swelling
receded enough to allow what neurological signals I had (motion and pain) to be
transmitted along the spinal cord.
Before leaving the rehab hospital in November, I noticed I had regained
some motion in my knees (slight movement in and out). In January I suddenly realized I had regained
some control of my core and could sit up or back against the backing seat
cushion. Soon after I realized I could
lift my feet back and forth between the wheelchair footrests and the floor.
Two-plus years of physiotherapy, three times a week
helped maximize my strength and range of motion. It took some time longer to regain
proprioception (knowing where in space my limbs were).
Sitting in my wheelchair I could exercise anytime by
lifting my legs up in front of me.
(Sorry, my Grey’s Anatomy is packed away.) That was fine for strengthening my (upper) thigh
muscles. Unfortunately the muscles on
the underside could not receive the same attention as I cannot bend my legs
back as my heels hit the wheelchair frame.
It was a lop-sided sort of exercise.
I had hoped the gym equipment would help strengthen those
and other leg and core muscles. After
just over two years at the gym (2 to 3 times per week for about two hours at a
time), there was some improvement but not to the extent I had wished and the
improvement did not translate into improved or independent mobility. As I mentioned before, I stopped going after
the equipment was swapped out for newer models on which I couldn’t find a way
to safely use.
I felt that this was about as far as my efforts would
take me. I returned to work and worked
for an additional five years until I accepted early retirement. I retired not because of any hardship, though
there were plenty of challenges, but rather because the hospital at which I
worked merged with another and consolidated the laboratories. There were just too many staff members and my
age and years of service qualified me for early retirement.
I am fairly independent as I can live on my own if I
must. My wife is out of town frequently
and I can do all the chores, unassisted, that I need to do for daily
living. I hope to find a way to get back
to my wood working. I have a basement
full of industrial quality equipment and only need an accessible location to
reconstruct my shop. (I have just moved
to a new location). Time will tell.
In my mind I find an apparent disconnect between my
injury and my debilitating symptoms.
Over these eleven years I have regained motion right down to having weak
yet obvious motion down to and including my toes. I have the sensation of touch and of
temperature in my legs though not as acute as before my injury. But I can move a few toes, I can stand on the
‘balls’ of my feet, I can stand up from a sitting position (some help by
pushing on the armrests occasionally helps).
And I can stand freely for some short periods of time and braced (back
of the legs) for longer. In the gym I
could press several hundred pounds on the inclined-leg bench-press and could
even kick some smart-ass in the pants if the situation warrants. I can walk some distances with the assistance
of a ‘walker’ though my problem in doing so is more mental than physical. I have a sensation of loss of balance, more
so from not having walked for so long rather that the inability to maintain my
balance.
So, in essence, I can do just about everything with my
legs except for walk away from my wheelchair!
I sympathize with those who have recently received a
spinal cord injury. Heartbreaking
stories appear in the papers of people vowing to fight hard and walk
someday. I say “good-luck” to them. I hope they do and for some reason some
people regain the ability to walk. I
don’t wish to ‘rain on anyone’s parade’ but as I have described with my injury
–I have regained almost all of my pre-injury motion yet after years of
physiotherapy and persevering determination, I still sit bound to a
six-wheeler.
It is almost as if the body actively works against
recovery. The stiffness! Any stretching out is lost within minutes of
stopping. I have found that the
paralysis itself, the inability to move, is the least bothersome aspect
associated with spinal cord injury. What
destroys your outlook, your joy; your determination is the never ceasing
tightness, shocks, burning and most of all, the spasms.
Once again:
“I hope I feel awful tomorrow as awful would be so much better than how
I feel today”
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