Spinal Cord Injury Recovery -My Story 12 Years Post Injury

Spinal Cord Injury Recovery - My Story 12 Years Post Injury

A while ago I checked the statistics relating to specific spinal cord injury topics I’ve posted and not surprisingly found that Spinal Cord Injury Recovery the most read.  Not surprisingly as anyone who has experienced this life-altering injury desperately hopes that there’s a light at the end of that very dark tunnel.

Do you believe in miracles?... I don’t.

If you were told you won’t get much better and find yourself improving, I attribute that good fortune to medical misdiagnosis of the severity of your injury by your doctor.

If you are a religious person, go ahead and pray to your God---it certainly won’t hurt.  But I personally don’t believe it will help.  After all, where was your God when your injury occurred?

For myself, I don’t believe God had anything to do with my receiving this injury and God will probably offer the same amount of involvement in its healing.

Some more background:

So, first off---all injuries are different, not only in cause but in severity.  Immediately after your injury, were you properly stabilized and moved by properly trained personnel?  How quickly were you diagnosed and received appropriate medical intervention?  How quickly did you receive physiotherapy to keep you limber and maximize your chance of recovery?

As my injury was due to an infection by the bacterium Staphylococcus aureus, its physical invasion and toxins produced damaged my spinal cord differently than severing, shearing, crushing or even a stroke would.  Even other bacteria or viruses would have damaged differently.  You see, Staph aureus produced a variety of enzymes and toxins that can inhibit the body’s response to the invasion as they damage tissue.  It is my belief that many of my neurological pathways are mostly intact but modified.  The enzymes action on my spinal cord were similar to a solvent being poured over a bundle of insulated wires which when denuded of insulation produce short-circuits.  I can relieve the itch on the bottom of my left foot by scratching my left butt.  Go figure!

I believe most doctors tell the spinal cord injury patient that what they get back in the first few months (six months) is all that they can expect to recover. (I’ve heard a number of variations on the timeline).  Personally, I could not move my knees together more than an inch when discharged after six months.  Movement did not improve until the eighth month when the inflammation from my infection subsided.  I believe my injury would not have been so great if the inflammation could have been reduced much sooner.  The body produces inflammation to swell the tissues thereby localizing the injury or abscess.  However, that same inflammation may also restrict the body’s cellular defenses against the infection, constrict blood flow to the area and the physical swelling may further damage surrounding tissues.

My injury (infection) occurred at the T-5 to T-7 area.

Only after 8 months post-injury, as inflammation subsided, did motion slowly begin to return to below my waist.  The downside to that is that the same pathways carry the sensory (pain) signals and I began experiencing the burning neurogenic pain.  Spasms became more pronounced at that time as well.

I was lucky as my employer’s benefit package included unlimited physiotherapy of which I took full advantage.  One hour sessions three times a week was recommended.  I received physiotherapy in a hospital setting for two full years and then for a number of months longer at a private physiotherapy clinic.  I believed that I had come as far as I was ever going to recover after some two to three years post injury.

Still, I joined a gym and utilized whatever equipment I could---about two hours at a time, twice a week for another two years in hopes of staying limber.  The gym I attended began changing out equipment to models my limited motion prevented me from using.  Also personal circumstances limited my attendance to the two years.

Okay---Twelve Years Post Injury:

Neurogenic burning: has been a constant companion ever since the inflammation subsided some eleven years ago.  No better but no worse either.  Gabapenin, Nortriptyline, Amitriptyline and Lyrica have done little if anything to reduce the pain.  Perhaps they reduce the number and intensity of zapping shocks that can spontaneously occur above the steady burn.  At best, the drugs may take the edge off the burning pain but if so, only by a few percent.

Spasms:  Spasms cause limbs to jerk or jump rhythmically---contracting every few seconds and then relaxing---on and on, often for hours until they ran their course.  I found it curious that spasms occur only in one limb at a time but can switch over to the other limb: what (shared) pathway?  Analogies: Is it some sort of feedback loop caused by a ‘dripping’ neurotransmitter---where each ‘overflowing drop’ causes a spasm? Or could is it some ‘electrical spark’ where each ‘zap’ causes the spasm?  Could it be a combination of the two?

What triggers spasms to start or to finally run their course and subside?  They seem to come from nowhere and seem unaffected by work or rest; leg position (sitting or lying), temperature, nor any other physical condition of note. While they could occur at any time of the day, they most certainly will start in the evening.  My spasms usually last no less than an hour but usually several hours at a time.  The longest stretch of continuous spasms was for eight hours.  Sometimes putting pressure on the limb (foot) can help eliminate the spasm---stand up if able or if sitting have your feet on the floor and lean forward.

Initially, once the spasms finished, they let me sleep in peace and did not appear again until the next day or evening.  Around nine years post-injury, the frequency of spasms increased. I began experiencing spasms throughout the night, often when lying too long on one side or the other---however these spasms were short-lived meaning, unlike the long-lived spasms of the day, they usually subsided on changing position.

Nine years post injury I began to experience what I called ‘Atomic Spasms’.  These spasms were so explosively violent that the one leg or the other would contract to the limit yet the muscles tried to go even further feeling as if the leg would be pulled from the hip socket.  ‘Atomic Spasms’ produced excruciating pain as the body felt as it was attempting to tear itself apart.  My ‘Atomic Spasms’ lasted for about a year and half or two years then disappeared.  (Regular rhythmic spasms still occurred throughout this time period)  I have no idea why the ‘Atomic Spasms’ began then disappeared except that they started shortly after I left the gym and perhaps there was some reaction to the cessation of strenuous exercise.

On discharge from the hospital I was placed on the maximum oral dosage of Baclofen with Valium added in an attempt to control my spasms.  I continue to take the Baclofen however the Valium was discontinued early on.  I feel the Baclofen has little effect on spasms if defined as the rhythmic contraction and relaxation (jerking) of a limb.  What it seems to do is reduce some tightness in the limbs.  I found when I attempted to wean myself off the Baclofen that my legs drew together and attempted to cross making it more difficult to separate the legs into a ‘jumping-jack’ position.

Proprioception: Defined as knowing where your limb is in space without looking at it.  Proprioception was lost with the injury but slowly began to return after the eighth month post-injury, however it did take longer to come back.  I feel I’ve regained most of that particular sense.

Tactile Sensitivity:  I can feel both sensations of touch and temperature in my feet but they are not as quick or as intense as previous to my injury.

Movement:  After my physiotherapy and the independent gym routines, I could walk short distances with a walker with a fairly normal gait.  Even with physiotherapy and the gym, the muscles in the back weaken and want to give out.  While I can stand and even let go of the walker, I cannot recover if I start to waver and drift to any side---front or back.  I describe my sensation as trying to balance a pencil on its eraser---pointed end to the ceiling; not easy to do.  I can stand if braced, reach high or bend to pick up off the floor.   I can just about do anything other than walk away from my wheelchair.

Stiffness: I have an overall stiffness which seems greater than what can be accounted for neurologically. By that I mean in twisting my trunk about my waist, I feel that neurologically I can twist further but that the tissues (muscles, ligaments, etc.) are restricting the movement.  If this is not a neurological deficiency then the muscles, tendons and ligaments have shortened or stiffened to limit the range of motion.  Further evidence is that Baclofen has no effect on this stiffness.  If this is the reason then why didn’t two years of physiotherapy and two years of independent gym activity stretch the connective tissues back to normal?  Perhaps I’ve developed “contractures” which roughly is the ‘gluing’ of one layer of tissue to another so that they essentially become fused and may require surgery to be separated.  The Achilles’ tendons also shortened while during my six-month hospital bed confinement.  Again, physiotherapy and gym routines plus day to day standing have not returned the Achilles tendons to their normal length.  While I can stand, the short Achilles point the toes downward and always want to push me backwards.

Other: body/bathroom functions are unaffected by the injury.  Because I can shift and move around independently, I have no skin issues.  I try to sleep on my sides or stomach to give the backside a break from pressure.

My injury weakened my left side differently than my right.  As a result of a change in muscle strength, I place more pressure on the left hip.  My injury resulted in sciatic nerve pain in my left hip which at times extends to my foot.  A blood vessel must run near the nerve (can’t find my Gray’s Anatomy book) as the pain pulses with every heartbeat.  Sciatic nerve pain is always present but intensifies to excruciating levels about once a week then subsides to a lower level of pain.  Exercise and other physical techniques have not lessened this pain.

Final Thoughts:  I truly feel I would have recovered further if the initial inflammation could have been reduced.  Six months of hospital rehabilitation with one hour physiotherapy five days a week is insufficient in keeping affected limbs limber.  Persistent movement after the initial injury is sufficiently healed would be extremely beneficial.  How can one keep the Achilles tendons from retracting if there is any hope of walking again---some kind of boot keeping the tendon extended?

Once the high-priest of medicine wearing his white lab-coat vestments; a stethoscope in place of a crucifix, and pronounces you a paraplegic, there is not much real effort extended in helping you recover.  Doctors don’t like to be proven wrong.

In the final analysis, my recovery is about the same as when I finished physiotherapy about two to three years post injury.  Spasms, burning, stiffness and, of course paralysis remain,  No other changes or improvements occurred other than the increase of spasms which now also occur during the night into early morning.

Prayers or positive attitude---use whatever means to keep motivated and keep moving.  Just remember, doctors are not always right.

*   *   *

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.

Spring-Summer Regime

Spring-Summer Regime

(Concluding "Physio Lite")

In a previous post entitled "Physio Lite" I outlined my plans for the winter of 2009-10. Due to hospital restructuring, the outpatient physiotherapy program at my hospital was terminated and those patients, like myself, were advised to find continuing physiotherapy in private community clinics. I chose the only clinic near my workplace accessible without without having book additional transportation

My reason for finding a clinic was two-fold. I wished to receive additional therapy to strengthen my core muscles in order to have better control and posture when standing upright. Secondly, as my home did not provide enough linear space in order to practice walking, I hoped to find a longer continuous space in which to walk while the winter snows prevented me from walking outside.

True to my expectations, the private physiotherapy clinic was not geared to treating patients with brain injuries, spinal cord injuries strokes or other major neurological tramas, but rather specialized in treating sports jocks and people with community acquired strains and sprains. That said, I found them to be quite professional and dedicated. The atmosphere and staff were welcoming and although the therapy sessions were a half hour each, I was never rushed and allowed to walk and use exercise equipment as long as I wished - usually dictated by by my scheduled ride home.
*(photo is of my physiotherapy clinic's gym. Gives some idea of the distance walked)

The half hour physiotherapy included a variety of stretches including hamstring, Achilles, and piriformis. I also recived further instructions on exercises I could do at home. Early in the new year of 2010, once a week massage therapy was added to the twice a week physiotherapy regime. Cost was paid for out of pocket but later reimbursed by my private insurance plan.

So what was accomplished in this half year of private physiotherapy?

• on the first day of therapy my physiotherapist performed a piriformis muscle stretch and the spasm that it generated almost threw her across the room. The spasms quickly subsided during subsequent visits & stretches however, after a winter of receiving the stretches, the increase in range and reduction of spasms has not translated into reduced sciatic pain. It continues as unpredictable and intense as ever. The links provided shows a technique in performing the stretch that differs from how I received mine. I lay prone on a table/bench while the physiotherapist braced with her hand around my hip while pulling my leg outwards like the handle on a slot machine.
  

Another link which which may be of use - YouTube Piriformis stretch.

• the range of my hamstrings is now about what would be considered normal, or pre-injury. The Achilles stretches were discontinued early on as the diminutive physio's physical effort was insufficient to be effective. (ie. I'm a big guy and she was a rather small young lady.) My own weight & repeated standing, whenever able during the day, was no doubt more effective than any force she could apply. Regardless, no matter how much I stretch the Achilles, I find that they tend to rebound to a tight state very quickly. The stretch doesn't last, perhaps due to the 'tone' I spoke of a few posts earlier. Early in January, I received another set of BoTox injections to the gastrocs and soleus muscles in hopes of reducing the tightness which prevents me from getting my heels down and not tilting backwards when standing. Although my physio thought she felt a slight amount of increased range right after injection, the amount she detected was minimal, nor did she feel the effects lasted very long. I felt very little change internally though after the effectiveness of the Botox wears off after about 3-4 months (due to the regrowth of the peripheral muscles targeted), I once again may have noticed a slight deterioration of my gait. (ie. walking was not as fluid and smooth). I now have to decide whether its worthwhile in getting future injections.

• laser therapy was applied to my hip and sciatic nerve area in hopes of lessening the pain however, in the end, I feel it had no effect, even temporary.
  

• Walking - core strength has improved which allows me to walk in an upright position and not lean heavily on the walker. In fact I can lift the walker off the ground while standing however I'm still unable shift weight to one leg while lifting the other foot, as in stepping, without the support of the walker. I don't have the measurements of the gym, however I graduated from walking the full length and back some 6 times when I first arrived to 25 to 30 times when I concluded last week. My stopping was due more to my time running out as my scheduled ride neared, than to fatigue. From full paralysis in 2006 to walking with a walker in 2010, I have yet to stumble and fall to the ground - a record I hope to keep.
  

• I used an apparatus where I could lift weights with my legs or switch the configuration to pull the weight downward with the hamstrings. This improved the muscle mass and strength in the hamstring muscles and quads. In the end I was doing about 50 repetitions of 100 pounds each session - twice a week.

• Massage therapy was started in January. Although advised by my BoTox physiatrist that it would be of little use and that I should save my money, I thought it was worth a shot anyways. During my post-injury recovery, my calf muscles have become rock-hard probably due to the tone - the very tightness which the BoTox had little effect on. More recently, I've noticed that my legs get very cold to the touch, especially at night (I don't feel cold, but the legs are noticeably cold to the touch). This again is probably due to the 'tone' - the brain telling muscles to clench which now constricts blood vessels and blood flow to the limbs (legs) affected. It appears that the doctor was correct as the legs remain very hard and tight even after my massage therapy coverage was exhausted. The massage was not restricted to my legs but also applied to stretching out and treating the lower back and piriformis muscles in an attempt to reduce the sciatic nerve pain. In the end I find myself undecided on the effectiveness. Some days post-massage I feel I have some relief, then again other days the pain that follows is as intense and as frequent as ever.

So, in summery, I did improve my walking, both in posture and endurance. Neurogenic nerve leg pain and sciatic nerve pain, however, remain and are as frequent and intense as ever. Both can be so intense that they make life very miserable 24/7 and are impossible to ignore.

The future? As I entitled this post, 'Spring & Summer Regime', it is now up to me to prepare a schedule and find a suitable location to practice walking and build on the endurance I gained at the physiotherapy clinic. With better weather, I can venture outside along sidewalks, in local parks or in shopping malls when crowds have dissipated. Structured physiotherapy provided the incentive to attend bi-weekly. Now it is up to me to find the discipline to continue walking on a daily basis. Wish me luck!

Odds & Ends

1- Had a third series of Botox injections two weeks ago and hoped that this would aid the tightness in the calf muscles to allow better movement/range from the ankle.

Now, when I had the first two series of Botox injections, the physiotherapists were concentrating on getting me up and walking - with the hope that Botox would improve my stride. They didn't check for range of motion pre and post injection to see if there was greater range and flexibility. Internally I did not notice any change in sensation nor any increase in range from my perspective. As the effects of Botox were to last about 3-4 months, before blocked nerves regenerated and formed new pathways, the only feedback I had regarding the effects of Botox therapy was what I thought was a shortening of my stride as the next injection date approached. My Physio and I thought that this was probably due to new connections circumventing the Botox blockage and therefore the Botox was effective.

Now that I am upright and able to walk for periods of time, my new physio was concentrating on various manipulations to my limbs such as stretching out the quads and hamstrings as well as the piriformis muscle (but more on that one later). As she was directly observing and working on the range of motion of my lower limbs, she was interested in seeing exactly how much more range the Botox therapy provided after a series of injections to the Soleus and Gastroc muscles (basically the two calve muscles joining to the achilles.

As it turned out, she said that there was an increace in flexibility and range a day after I received the injections, however now after only a week has passed, she no longer detects that change even with the increased therapy. Could the Botox really be that ineffective for me? If so, I really have to reconsider whether to take any more shots in the future.

2- As mentioned, I'm back to the Gabapentin from the Lyrica as in the end I felt the Lyrica had no greater effect that the Gabapentin, had fewer side effects (for me blurred vision and probable weight gain) and was less expensive which would please my private supplemental health insurance carriers.

3- Also as mentioned, I'm walking more at the physiotherapy clinic though still somewhat unsteady. Have to improve on the core muscle stability as the muscles, particularly the lower back, tire quickly. Trying to regain that link - feedback from the feet on the floor, telling the brain what's happening and subsequent messages from the brain telling the muscles how to perform to correct, compensate and maintain balance while upright. Since standing for the very first time, post injury, I still have not fallen to the floor once.

4- Tone- not the tone that athletes & body builders speak of when they say an athlete is really "toned", but rather refers to the increased tightness, post spinal cord injury, where the communication between the damaged cord and the brain, tells the brain to clench or tighten. Baclofen is supposedly prescribed to lessen this signal and reduce the tightness experienced.

In my case, I believe, (I believe, because meaningful feedback from therapists and doctors is sadly lacking) - In my case, I believe that because the injury is not quite symmetrical, one part of my spinal cord received more or different damage that another. As a result there is greater 'tone' on my left back muscles than the right resulting in a greater pull or tension on the left. It is also my belief that this results in my left side pulling more on the muscles attached to the hip and this asymmetrical pull results in my sciatic nerve pain. A tremendously painful affliction which is bothersome even when not sitting. On my stomach the nerve throbs with pain with every pulse and heartbeat. A truly maddening situation. On the few good days it is noticeable but tolerable. On bad days it is excruciatingly painful, drawing one's attention to it ever minute or so. Something I've endured for three years and no health care professional has offered any advice other than to "learn to live with it". Yeah, right!

This new physiotherapist has at least attempted to stretch out the piriformis muscle with a manipulation akin to grabbing my leg by the ankle and while bracing with one hand on my hip, pulling the leg out sideways. When she first attempted this on my weaker (painful) side, the resulting spasms were so great the I thought the recoil was going to kick her in the teeth. However, within days the spasms lessened to where now she can pull through just about a full normal range with only a slight shudder on a very few stretches, I do believe this has helped the pain. Although a bit tender the day after the therapy, I get a couple of good days afterwards. For how long, I'm not sure as I'm back in physio receiving that stretch and subsequent post physio tenderness the day after. Not sure how long the relief might last however as the tone is always there, the hip will most likely be pulled out of alignment once more.

5- Low Level Laser Light Therapy. Not sure if this is revolutionary or just plain Voodoo science but I've had a few sessions with laser therapy in an attempt to help my sciatic nerve pain. Can't quite see how it would help in my situation. I understand the premise is that the laser light somehow alters the cellular biochemistry at the site it is applied thereby increasing healing. (very oversimplified). But I just can't see how shining light on my butt will cure a pain that is much more deep seated (no pun intended). Therapy consists of placing these light emitting panels under my shorts, positioned against the skin at the afflicted site. The laser is turned on for six minutes after which a different panel is inserted (different intensity?, frequency???) for another six minutes. There is no sensation associated with the therapy (ie. no heat, pulse, pain etc.) After about 4-5 sessions now, I notice no difference, however I notice very little change from any of the therapies except possibly the stretching of the piriformis muscle. Nerve still hurts but doesn't spasm as much. Laser therapy was included as part of the physiotherapy session.

6- My physiotherapist suggested I try massage therapy once again to loosen up the legs and perhaps increase circulation. I passed the issue by my physiatrist (Doctor), specializing in spinal cord injuries however he stated that there are no studies suggesting that massage therapy aids this tightness. The 'tone' will always be there - it cannot be shut off but only controlled with doses of Baclofen. It was my impression that he believed that the tone would simply undo, or fight any improvement the massage therapy might offer, negating any gains almost immediately. As my private insurance does cover limited sessions of massage therapy, I though I'd give it a try because;

• my doctors have been wrong in the past, numerous times
• each person responds differently to therapy
  
• the cost is covered and the therapy can't hurt
• it may aid circulation if not the tightness from 'tone'

Having had my first massage therapy session with the new masseuse, my impression is that she knows her profession and that it offers temporary relief if not longer lasting. With only one session I have yet to make judgment on the effectiveness of this added treatment. My hopes are that it too will help my agonizing sciatic nerve pain.

Phyisotherapy twice a week after work for an hour to hour & half and Massage therapy once a week for a half hour. 12 hour days! Pain at times is unbearable and not much to look forward to can really mess with the mind.

State of Affairs at Three Years Post Injury

So where have I gotten to three years post injury?

On some hazy day in April of 2006 I woke to discover my legs would not move. Major surgery weeks later after antibiotic therapy was initiated but seen not to be effective on it's own. Six Months over three different hospitals. Could not sit up at all - would flop over at the waist like a rag doll. Lifted from bed and chair with sling and hoist. No movement below lower chest, no pain (after initial surgical incisions) Catheterized. Left rehab hospital in about that state with only the slightest movement returning to my legs - which I decided not to share with hospital staff because of a disinterested if not negative attitude. Two doctors dryly stated that I would never walk again.

Returned home at the end of October of 2006 in about that state. Hospital bed in the living room, hoist, etc. Community health care sent me an in-home physiotherapist who assessed me and felt some flicker of movement stating "we can work with this". In January of 2007 I suddenly realized that I sat up with some abdominal control while reaching for something. As the inflammation continued to recede, the mobility slowly increased but the amount of neurgenic leg pain increased with it. The bad came along with the good. Post injury, through this period, I had massive spasms where one leg or the other would begin jerking uncontrollably, one or the other (never both at once, hmmmm?) and the would be violent and last sometimes for hours.
Started physiotherapy 4 times per week at my local community hospital (hospital number four). After a few months one gym session was replaced with pool therapy.
Got fed up with bowel treatments and catheter bags after the first year and got rid of them. Those functions have returned to near normal.

Continuing physiotherapy over the next few years, strengthening whatever muscles had returned under my command. During this time I was fitted for long braces (KAFO) which had a locking hinge at the knee. Put them on and wobbled in the parallel bars further strength and balance. Progressed to braces below the knee (AFO), with a limited hinge at the ankle. Each progression took about a year (a year from exercises on a mat to a sit-to-stand frame, another year to progress to walking with long braces, another year to walking with the short ankle braces, to now walking distances with braces and walker.)

Paralysis is only some 50% of the problem. The other major problem continues to be the intense and constant neurogenic leg pain (pins & needles/burning). The spinal nerves are permanently damaged and are continuously sending the signal that something is wrong and to stop it - only it can't be stopped.
Drugs have little or no effect on this particular type of pain.
Spasms have reduced to a few mild ones, usually late evening and not lasting for very long.

BoTox therapy could not be felt internally in any way but did improve my gait as the stride seemed to be longer and better controlled - that is, foot went right where I wished to place it rather than perhaps drift a bit or pull in to center. BoTox may have lost it's effectiveness about 3 weeks prior to my 4 month post-injection assessment and probable repeat injection.

In spite of the intense core exercises I still feel as if My middle is wrapped in a large Theraband (elastic band). Muscles are very tight and don't want to give at all. Doesn't hinder any motion or breathing but feels uncomfortable.

Muscular control has returned to much of my legs but the dorsiflection (lifting my foot off of the ground with heel in contact with the floor - or cannot tap my foot on the floor as I can push down but not pull up)

Post injury the muscles or back were altered such that I developed an intense sciatic nerve pain which manifested itself as an intense pain in the left seat/butt/hip joint area, making it hard to sit for any length of time. Turning on my side or back doesn't help much as even each pulse of circulating blood causes the spot to throb. The pain often manifests itself in the left heel at the same time. The most recent core exercises seem to have helped with this pain as it feels less intense, and occurs less frequently. Some days good, some not so much but can't correlate the change with 'post-exercise' fatigue, length of time sitting, weather, barometric pressure etc.

So in summery, I went from a catheterized rag-doll stuck in one position to now where I can turn to sleep in any position on my bed, dress myself and leave home for appointments without assistance. While my neurogenic leg pain remains intense and very distracting, other symptoms have improved immensly and I can walk with a fairly normal gait with the assistance of a walker. Distances are limited but are improving week to week. Transfering to a car or van is no problem as I can stand and swivel into the seat and lift my own legs into the car under their own muscle strength and control (no transfer board). Lyrica medication does not seem help the nerve pain much, if at all but one of the side effects is weight gain and I believe that side effect may be manifesting itself on me, which is problematic as I'm a big guy anyways.

So, I'm walking ever increacing distances but nerve pain remains the most distracting symptom.

Progress?... Really?

Progress??....Really???

Everyone has been telling me that I'm making progress. Physo patients who I don't know have even stopped to chat and told me how they've seen me improve. Then why don't I feel it???
Things will never be the same but I don't see any 'light at the end of the tunnel' where I feel that some degree of normalcy and joy of living returns. Eighteen months ago I was catheterized and hauled in and out of my chair with a hoist and now I move about from bed to chair to washroom under my own power.

So why was I more optimistic about the future when I first started the journey to recovery than now?

Constant pain varying from moderate to intense is continuous - relief comes only when passing out asleep.

1. Nerve Pain continues - from just below the knees to the toes. A pain which is a cross between intense burning or an intense tingling (needles & pins). No relief from any medication (Nortriptyline & Gabapentin). So intense at time than it is difficult to concentrate on any task as my mind is constantly being drawn back to the pain.
2. Sciatic Nerve Pain - Muscle imbalance has left one side of my abdominal/pelvic/back muscles weaker than the other side causing one side (hip) to be pulled out of alignment resulting in intense sciatic nerve pain. Doctor could offer nothing for relief & a year of physiotherapy has not helped this condition.
   

Have to wonder how long before I'm driven mad by the pain???

Spasms: an involuntary rhythmic contraction and release of the muscles, particularly the legs but extends into the back. Spasms have lessened in severity & duration over time but still can start up on either leg and be extremely annoying. Muscle contraction can be mild to extremely violent. A condition I shall have to live with.

Mobility: Continue to improve. It seems to me that 50% of my mobility problem was a direct cause of the spinal cord abscess and the other 50% was caused by muscle/ligament etc. deterioration from a half year+ lying in bed. Even now, some two years later, the amount of walking I can do is for the most part dictated by the time I spend in the physiotherapy department. After warm up and putting the braces on, there is only about a half hour of actual walking time available. A half hour once or twice a week is insufficient for recovery!!!

In the last few months walking has become more fluid and I'm able to stand more upright although the tight muscles/ligaments in the lower back refuse to loosen up and can cause a rather intense dull pain after standing erect for some time. The muscle weakness that is causing my sciatic nerve hip pain also shows up as I sway and collapse more to my left side with each step I take. I am starting to take the large and bulky leg braces home with me to add some additional time walking, however, neither our home's interior nor backyard etc. offer much room for a proper effort.

I have had one AFO (Ankle Foot Orthotic) made which I'm starting to use as my knee gets stronger and no longer buckles or hyper-extends as I put weight on it unsupported. It's my hope that in the somewhat near future I can get an AFO for the other leg and that I'll be able to replace my bulky KAFO (Knee Ankle Foot Orthotic) with the AFOs and have a more normal walking gait.

I am riddled with frustrations and overwhelmed with anxiety. Have to get back to work in order to continue my extended health care benefits including the drug plan and physiotherapy, yet the constant pain and discomfort make it difficult to concentrate.

Walking the Hospital hallway with KAFO (Knee Ankle Foot Orthotic) Braces and Walker
(3-5 repetitions of hallway length 2-3 times per week)

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Perpetual Pain & Discomfort - The New Normal.

Perpetual Pain & Discomfort - The New Normal.

With the easing of trauma around the spinal cord resulted in increased recovery of movement but along with it, the increased pain and discomfort of the neurological damage. On the up side, signals to the muscles were beginning to get through but on the down side nerve pain increased what seemed proportionately. Now, although a good deal of mobility has been recovered, I live most days in excruciating discomfort and pain. The available drugs do little or nothing to ease this distracting discomfort.

Can’t Stand & Can’t Sit

Sciatic Nerve Pain:
Although I can stand up at the parallel bars or when braced against my chair, and can even walk with my leg braces, neither can be done for any length of time. Whether through physical trauma or the consequences of infection, injury to the spinal cord is usually asymmetrical. In my case this resulted in a muscle imbalance affecting the ‘pelvic cage’. My left hip doesn’t sit in the proper position resulting in what I would assume is pressure on the sciatic nerve. With the muscles not holding the hip joint in the proper position, the joint often produces a ‘hitch’ with a audible click as a ligament catches producing a moment of pain in the hip joint. This is in addition the sciatic nerve pain which simply feels like pressure pain on the hip joint when sitting in a chair or even semi-upright in bed. Even lying on my side or on my stomach doesn't stop the pain. Often it continues to throb with every beat of my pulse. The sciatic nerve causes not only hip pain but it radiates right down to the heel of the foot. Exercises may possibly help as well as non-steroidal anti-inflammatory drugs (NAIDS) - neither of which offer me any relief.




Damaged Nerve Pain:
Nerve pain, whether caused by progressive diseases such as diabetes, cancer, guillain-barré syndrome or by physical trauma can result in a burning discomfort in the affected limbs, in my case the legs. My legs feel as if they are immersed in very hot water which can extend as far up as to the knees.

Shooting Electrical Pain: On occasion I get these shooting electrical pains which feel almost identical to having had that limb touch a live 120V electrical wire. A sudden and unexpected shock or zap causes the limb to jerk in response. These electrical shooting pains usually occur in clusters - after a number of zaps the subside until the next event.

Other Physical Pain: Walking with the leg braces has resulted in further damage and discomfort. The rigid braces pushed against soft flesh resulted in pinching and gouging in more delicate areas, particularly the inner thigh resulting in bruising, blistering, bleeding and abrasions. Having been bed ridden for so long, the soles of the feet have lost there normal toughness and calluses. The smallest amount of rubbing results in blisters and bleeding. This has to be watched carefully with the impaired sensation I have.
Because of the muscle imbalance from the injury, the sciatic nerve is irritated on my left but on my right the right hip does not activate properly when attempting to walk in the braces. The hip seems to lag behind and does not want to come over the leg/knee when taking a step. The resulting swagger in my gait is caused by that hip momentarily falling out to the right side. As it does the right leg twists in compensation resulting in an irritation and slight pain in my left knee cap as it twists. Ultrasound therapy may be in order for the knee if the pain persists.

Muscular Spasms: A direct result of the spinal injury. Although not a pain as such, the are a tremendous nuisance. Again, often unexpected or preceded by what might feel like a momentary increase in tension, the leg will jerk uncontrollably and usually set up a rhythm. The limb might jerk as often as once every few seconds. This could last for minutes or hours. The spasm or jerk could be so unexpected and violent that one is unprepared for the action and the intensity might not even be duplicated if one tries. In other words, I would not be able to move my leg that fast if I tried. I cannot voluntarily duplicate the suddenness and intensity of the jerk.

With the increased mobility has come distracting, annoying and frequently excruciating pain. I can't find comfort nor sitting or in standing. Constant pain is so distracting that it is often impossible to concentrate or focus on a task whether reading a book or just watching TV. Passing out in sleep seems to offer the only relief.

(Is this any way to live?)
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