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.

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Neurogenic Pain vs Common Pain

A simple graphic to compare Neurogenic Pain vs what might be called 'Other Pain' or 'Common Pain' or perhaps 'Everyday Pain' and their response to analgesics (pain medicine).

Regular Pain when treated with analgesics

Neurogenic Pain treated with the same analgesics

So how do you relieve burning Neurogenic pain?  In short you don't.  You grit your teeth and learn to live with it!

To my knowledge there are only four drugs which currently claim to alleviate Neurogenic pain.

1. Gabapentin
2. Nortriptyline
3. Amitryptyline
4. Lyrica (Pregabalin)

Are there any others under investigation, development or under restricted use?

From my personal experience (and I imagine every injury is unique), the above listed drugs may reduce my pain by perhaps 10% at best.  And I've tried them all.

Now if someone burns you with a lit cigarette 100 times an hour then reduces the burn to 90 times an hour, will you accept the kind gesture with gratitude?  Absolutely!  But ask yourself, is the quality of your life substantially improved?

I continue to grasp at straws...

*   *   *

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.

Back to Gabapentin From Lyrica

January 2009 - Nerve pain is as severe as ever. Intense burning from just below the knees to the toes. A cross between burning and 'pins and needles' or perhaps if your limbs were submersed in very hot soda water with the thousands of bubbles bursting as 'pin-pricks' each and every second of each day of the year. There is that constant tingling element to it.

With my latest prescription renewal I abandoned my experiment with Lyrica and have gone back to Gabapentin although neither did much, if anything for the nerve pain. The Lyrica distorted my vision and induced sleepiness. Gabapentin is cheaper than Lyrica and although covered by my private insurance so I guess it's preferable to take an ineffective drug that has less side effects and doesn't erode the profits of the insurance company's CEOs.

I continue to take the medication simply because I feel as if I'm doing something, even if not very effective.

Re-evaluating Nerve Pain & Pain Medication

Re-evaluating Nerve Pain & Pain Medication

It has been 3 years almost to the day that the inflammation in my back from the initial infection and subsequent surgery subsided. A two-way street, so to speak, as it allowed both signals through to regain motion in my legs but also the signal of pain to be my constant companion from mid-January, 2007 to present.

Burning, searing pain that is a cross between sensations of ‘burning' and ‘pins & needles’. Or perhaps a constantly fluctuating sensation as if my limbs were immersed in very hot club soda (soda-water) with painful effervescent bubbles rapidly bursting along those limbs.

Initially prescribed 300 mg of Gabapentin three times a day along with 25 mg of Nortriptyline once per day, I felt that there was little if any relief yet lived with that pain for about 2 &½ years.

About a half year ago I persuaded my doctor to prescribe Lyrica (Pregabalin) as an alternative to the Gabapentin. It is my understanding that Lyrica was “stronger” and therefore a lower concentration was needed to achieve relief. I started at 25 mg three times per day for 3 months and at first I thought that I did notice an immediate slight reduction of neurogenic (nerve) pain. However, I now believe that was simply a coincidence - for whatever reason I had a slightly better weekend after changing to Lyrica. Within days the pain seemed to be as before (or at least my perception of it was) and the constantly searing and distracting pain was as before.

On renewal I asked my doctor to double the dosage to 50 mg three times daily (It is my understanding that some people can tolerate as much as 600 mg daily). Living with the 50 mg dosage for another quarter year has lead me to the conclusion that the increased dosage does little if anything to ease my pain but does distort my vision and I find myself very sleepy by mid day.

Vision may become blurred, with multiple images especially with illuminated objects such as stop lights. The tiredness is felt mostly at mid-day in spite of my having sufficient sleep each night. A drugged tiredness where my head swims leading to a disorientated feeling, at times even feeling ready to nod out. Having weaned myself off the drug slowly, I feel that pursuing Lyrica at an even higher dosage would only lead to more pronounced side effects.

As renewal of my prescription approaches, I will either go back to the Gabapentin or perhaps do without nerve pain medication as it seems to have little or no effect at the intensity that I experience that pain. These are basically the only drugs that are available for nerve related pain and I’ve come to the conclusion that they are ineffective on the pain I experience.

It is difficult to accept that this constant and rather extreme pain will be with me for the remainder of my life. I’m reminded of how animals, ceaselessly tormented by biting insects, frequently plunge into deep water to escape their suffering.
How soon before this pain becomes too much for me to bear?…..and where is my river?……

Neurogenic Pain Treament Change

Treating the Untreatable

Neurogenic Pain

It was both a blessing and a curse when in January of 2007, I was reaching for some item in front of me and I realized that my torso actually angled forward. Previous to this, my injury had rendered me a virtual 'rag doll' from the chest down. Now, as the inflammation subsided, signals were beginning to flow again and muscles started to receive more and more signals. Muscles and limbs began to move, even if ever so slowly and weakly. The upside of this increase flow of signals was muscle movement, however the downside was pain. Nerves that send impulses to muscles to make them move, but also send sensory information such as tactile (touch), proprioception (position of limb in space) and, of course, pain.

With physiotherapy much of my muscle strength and action returned. Again, after being paralyzed from the chest to toes, I now have limited action only at the ankles and below. Pivoting my foot downward at the ankle (plantar-flexion) is quite strong, however the opposite, pulling my foot upwards (dorsi-flexion) is very weak. Lateral stability at the ankles is also reduced (feet may wobble or tilt at the ankle with reduced control)

But this post is about pain. It was the signals of pain that started in January 2006 and quickly increaced to a level that hovered between very annoying and excruciating. A constant sensation of a mix between quickly fluctuating "pins & needles"that quickly and repeatably stab and "burning" sensation as if your legs were immersed in very hot water. For me it occured just below the knees and extended to the toes. There would be some fluctuation up or down and in intensity, but for the most part I burned 24/7 from the knees down. So intense that it takes your concentration away ever few minutes as your mind drifts from the task you're doing to acknowledging the pain. Hard to enjoy a book, watch TV or concentrate at your job.

While at the rehab hospital, I was prescribed 300 mg of Gababentin (Neurotonin) three times a day. As my nerve signals were still not getting through at that point I felt no pain. On my discharge in the end of October 2006, I had the hospital discontinue this medication. In January of 2007 when the neurogenic pain revealed itself, I asked my family physician to re-prescribe the Gabapentin once again. I started taking it immediately but really felt no relief. This continued right through to this week. Didn't much help, but I continued taking it as I felt I was doing something to eliminate the pain. No relief and no noticable side effects. I could just as well have been taking a placebo.

I had heard about Lyrica (Pregabalin) on several occasions - from my physiotherapist, from the physiatrist administering BoTox, and some other health care providers. About a year ago (2007), I had asked my family physician about it but he was unfamiliar with the drug. On a quick consultation with his CPS (1), he dismissed it as having too many unpleasant side effects. So that was that...

The pain remained intense and distracting and in desperation I approched him again, intending to insist of trying it. This time, without hesitation or consultation, he wrote out a script for the medication. Strange!!?? I told him that, because of the side effects (discussed at bottom), I would like to start with a smaller dosage and work up if it offered any relief and I could tollerate the drug. I began taking 50 mg of Lyrica three times a day yesterday (July 17th, 2009). Only after one day, I wonder if the sensations are somewhat muted or reduced. Still too early to tell. So far no evident side effects other than perhaps some drowsiness shortly after taking it.
Although nothing will eliminate the pain, I do hope this drug would take the intense edge off and make life bearable again. It's hard to live a joyful, pleasant and productive life with your legs immersed in boiling water year round.

I continue to take the Nortriptyline (25mg at bedtime) for nerve pain but I feel it has little if any affect at all. Perhaps I may ask that be discontinued at some later date to reduce this biochemical soup in my system.

The side effects of Lyrica can include, dry mouth, blurred vision, drowsiness, allergic reactions and edema (swelling of hands and feet) , weight gain and possible increaced suicidal thoughts. This is not a complete list of side effects but some of the more common ones encountered.

(1) CPS - Compendium of Pharmacutical Specialties - a book compliling information on all the drugs available for use by doctors including information on use, dosage, side effects, contradictions, biochemical structure, pharmacokinetics (how it works), manufacturer etc, etc.

Progress at Three Years Post Injury

Progress at Three Years Post Injury

Three years ago I had a Staphylococcus aureus infection on my spine and six months later in the rehabilitation hospital was told by two doctors, rather matter of factly, that I'd never walk again.

Although still rather rickety, I walk daily at my parallel bars and with a walker in the hospital hallways. There has to be some satisfaction in proving them wrong...

I was fitted for a pair of AFO (Ankle Foot Orthotic) which is a brace for the lower foot. Paralysed from the chest down, I have regained much of my previous action however what hasn't returned is the ability to raise my foot up (Dorsiflection). Pushing down with the foot (Plantarflection) is not a problem. So, when I try to walk, my toes droop down, pointing to the floor, and often getting caught with each step. The AFO holds the foot up so that it doesn't catch. Mine have a hinge with an insert permitting some movement at the ankle. They're formed plastic coming up the back and side of the calf to below the knee joint. Under pants and in shoes, they are not too noticeable. So with their use I can walk fairly normally without tripping over my toes.

I've ordered my own personal walker however, I always seem to fall through the cracks. The model I wanted with wheels on the front and posts on the rear are back ordered and I continue to wait, and wait. I hope to spend much more time out of the chair and walking when I receive the walker and hopefully this will allow the muscles to further strengthen and balance/stability to return.

So Here is a short summary of my current status after 3 years;

(1) Paralysis - After being paralyzed from the chest down I now can walk with the aid of a walker for progressively longer distances. Differences in muscular strength (due to disuse rather than nerve damage) still has be a bit wobbly but that is improving. Balance and coordination will improve as strength and improves.

(2) Pain - Still significant. Pain and discomfort has remained relatively stable as my mobility increased. The neurogenic nerve pain fluctuates from just below the knees to the toes both in extent and in intensity. It is always there, day and night, often so intense it is difficult to concentrate on anything else. Still a cross between burning or pins & needles. Gabapentin and Nortriptyline do nothing!!! Doc won't prescribe Lyrica because of side effect concerns.

The other pain I have is Sciatic nerve pain. From my injury I suspect the nerve transmission causes one muscle to be weaker or another opposing muscle to be too strong causing my pelvic area to distort. Not noticeable by eye but the result is that there is pressure (compression or stretching?) of the sciatic nerve causing tremendous pain in the hip which occasionally radiates down to the heel. Hurts when I sit but even hurts when I lie on my stomach. Hip at the joint throbs with each pulse of blood. Analgesics (pain killers) don't work, nor has physiotherapy had much effect on it. Not too many options when you can't sit and can't stand. Well, I can stand but not for prolonged periods of time. In fact the sciatic nerve hurts least when I'm standing as I suspect the pressure pushes the alignment back to where it should be. Temporary relief.

(3) Spasms - Still get the occasional spasm. Some days a good number, some days none. Some days just a few, other days prolonged periods of jerking. Some days spasms so intense that they lift me off the bed, some days gentle jerks. Can't link it to anything. Extensive workouts, longer periods of inactivity, diet, weather, etc - can't find anything that triggers it or reduces it. Totally neurological. Only constant is that they occur more in the late evening and at night.

There is what I can only describe as a "creepiness" that floods through the legs prior to spasms. Feels like the leg starts inflating and pressure builds within - pins & needles. Of course nothing visible happens. Between nerve pain and spasms is a nuisance which manifests itself as shooting shocks. Out of the blue I might get shocks to some particular part of either foot. So strong it feels as if you've put your toe into a 120V electrical socket. Zap!! Usually seveal in a row but they subside after a minute or so. Smaller ones are identical to a pin prick usual higher up the leg.

(4) Tightness - What I figured was tightness in the muscles from disuse I now figure is only partially due to inactivity. The more I exercised and stretched, the more the muscles loosened but only to a degree. Much of it is probably due to continuous release of acetylcholine from the nerve endings telling the muscles to contract. This is a problem I'm having with my feet and achillies and calf muscles. Standing for periods of time stretches them out but in a short period of time they revert and tighten up. This can be felt by pushing the feet against the floor while sitting, or by trying to stand again. A tight tingling can be felt running up the back of the calf as the tightness is trying to give once again. BoTox (Botulinum Toxin) may assist this by blocking the signal. I'm looking into getting this therapy.

(5) Proprioception - Has improved a fair bit but still not normal. I generally can feel where my feet are in space but when walking with the walker I have learned to watch my feet as I walk and it is hard to break this redundancy. I have a good idea of where each footstep is going to land but the temptation is to look down and verify. Hard habit to break! I wonder how amputees fitted with prosthetics do it?

So, in summary - I'm still wheelchair dependant but I can walk with the assistance of a walker. I hope to improve much more when my personal walker arrives and I receive BoTox.
I can transfer with little difficulty to either my wife's car (PT Cruiser) and even easier to my van (Dodge Caravan). With the van, I don't even need a transfer board. I just stand, holding onto the door frame and step into to van, then lift my feet up. Works just as well in reverse.
Pain is the greatest distraction and no health care professional has been able to offer me any relief.

Spinal Cord Injury Recovery - Update

Recovery From Spinal Cord Injury

(A Mixed Blessing???)
(Living with Nerve Pain)

Summery: Movement improvement ~90% but with greatly increased nerve pain but lessening spasms. (some of this post is redundant from previous posts)

When in October of 2006, some 4 months post surgery, I started to notice the first signs of movement in my legs, I never realized what a painful and emotional experience the recovery process would be. In the end of January of 2007 the next real physical change occurred when I noticed some strength and movement in my trunk. I feel that at this point in time the inflammation began to recede which then allowed more signals to travel up and down my damaged spinal cord. This was a mixed blessing. The steadily increasing strength and mobility was of course welcomed but the flip side of the recovery coin was that sensation/pain signals also began to flow producing discomfort to the point of being unbearable on many days.

I can now move but live in continuous pain and discomfort. Will the discomfort ever ease or am I destined to go crazy from the never ending intense pain?

Medication to control pain is either ineffective or if it has some effect, perhaps if I were to go off of it I would truly be in excruciating and unbearable pain.

During my time in the hospital and rehab, I had no pain associated with my injury. Regardless, I was placed on the nerve pain medication Gabapentin. It was only 3 months after discharge that I began to feel a tingling sensation in my legs. That tingling sensation soon developed into a burning sensation which could vary day to day. My sensation is best described as varying from what would, on better days, feel as a tingle or having my legs immersed in club soda water. On bad days they burn intensely as if my legs were immersed in boiling water. The sensation/pain could be from the ankles and below or more likely extend to the knee caps. The later is more likely. I haven't been able to make any associations or conclusions regarding this nerve pain. There seems to be no correlation between intensity and exercise, weather, diet, fatigue, position, room temperature etc. The only correlation that seems to occur is the the burning increases at night.

Nerve pain differs from conventional pain which we all have experienced. This truly is a searing, burning pain which may tingle. At it's worst, it is so distracting that it is difficult to concentrate on anything other than the pain making it all but impossible to even watch TV without constantly being distracted.
Nerve pain also differs from conventional pain as conventional analgesics (pain relievers) such as acetylsalicylic acid (Aspirin), ibuprofen (Advil), acetaminophen (Tylenol) etc have no effect. To my knowledge there are only some 4 drugs in general use which may be effective against nerve pain. They are:

• Gabapentin
• Nortriptilene
• Amitryptiline
• Pregablin (Lyrica)

I am currently on Gabapentin & Nortriptyline yet the pain can border on unbearable at the worst of times and distracting at the best.

My doctor wrote a script to add Amitryptiline to my other nerve pain medications but the pharmacy informed me of what I suspected. Amitryptiline and Nortryptiline are closely related analogues of each other with similar actions and it wouldn't be rational to prescribe both concurrently. My pharmacist was going to discuss this issue with my doctor and get back to me by phone before filling the prescription. No phone call came and I didn't pursue the matter.

So now that I've regained much of the mobility I had hoped for, on most days I live in continuous excruciating pain. In all the reading I have done, there seems to be no remedy for this condition.

A Summery of Spinal Cord Injury Recovery
(From Injury to March 2008)

March 2008 - Having been paralyzed from the chest down (T-5) I have recovered motion, almost to the point of being normal in action and strength right down to my ankles. I am able to flex my foot up and down at the ankles but not side to side at the ankles. Lower abdominal muscles are active but very weak which I believe can be strengthened and recovered with proper sustained exercises over time. Tactile (touch) & temperature sensations extend right to the toes but are lessened and altered the further down I go. Below the ankles I can sense temperature changes but it takes a second or two to register and touch/pressure does not feel normal but rather like a tingling sensation.
Spasms which previously plagued me for hours on end have diminished and now occur sporadically, usually for short periods of time, more often at night and are not usually as intense as they once were. They still are present and like the nerve pain, I cannot link them to any trigger such as exercise etc.
I am currently walking with braces and a walker for about 120 meters (360 feet) at one time, up to three times a week. Although wobbly, I can stand without braces at my kitchen sink and put away dishes in the upper cabinets.

Tightness - Muscles, tendons and ligaments that have been active and at a certain length in daily functionality over my lifetime have shortened and contracted during post injury bed confinement. In spite of trunk & chest muscles becoming active, even after one year I feel as if I have a large elastic band wrapped around my core. I can breath normally but if I cough it feels as if my diaphragm doesn't give and there is pain with each cough. On standing, my legs have to stretch out as the muscles want to contract and not stay at their functional length. I can feel individual muscle bundles or sheaths in my calves slide against each other when standing. They stretch out over a day of exercising but once again contract overnight. A very unsettling feeling. How long before the muscles remain at a functional length??
Adhesions - When twisting, stretching or moving, particularly with the chest and trunk I often get the sensation of tearing flesh. I believe adhesions that have formed over the year where I was unable to move. In my mind, adhesions occur when muscles or layers of tissues which normally slide past each other now have formed bonds or bridges between layers. They no longer slide but tug, tear or ratchet past each other. Layers of tissue do not want to separate and when stretched, the bonds tear. This gives a momentary painful tearing sensation but doesn't last. Hopefully over time the tears become less frequent, the bonds are broken and the movement of tissue layers slide smoothly across each other. I have had massage therapy in hopes of speeding this process but am unconvinced that it actually helps and my private insurance offers limited funds for massage therapy. Funds have been all but used up in about 5 sessions. I see no point in continuing at this point and intense contortions and stretching are probably as effective.


January 2008- Started to "walk" with the braces for the first time in about late January. Firstly up and down the parallel bars and then in late February walking in the hospital hallway with a walker and the close supervision of my physiotherapist.
The design of the leg braces could have used some improvement as the locking knee hinge mechanism doesn't work smoothly, the lever comes apart and during the walking process, the left and right leg hinge mechanisms can latch onto one another and lock preventing me from taking another step. I have to teeter around on the braces and walker trying to unhitch one leg from the other which may lead to my physiotherapist having a heart attack! I came up with my own modification which I'm still evaluating but it seems to have reduced if not eliminated the locking problem.

From January to March I progressed from having to have two physios haul me up out of my wheelchair to the parallel bars and assist me in moving one foot out and back, to my walking virtually unassisted for 120m down a hallway. Proprioception remains a problem as I cannot tell where my feet are without looking at them. This propagates bad posture as my butt sticks out as I look down changing my center of gravity. Still working at that.
Being in bed or chair-bound for so long, I find it difficult to push my hips forward over my leg and recover the proper center of gravity necessary for walking. I can push my butt and hips forward to where they should be but find it difficult to hold them there. Hoping this will loosen up over time as it took time for them to seize up.

September 2007- First fitted for the braces and continued to strengthen with bench exercises and with the 'Sit-To-Stand' or 'Standing Frame' apparatus in order to recover balance and strengthen leg muscles.
Up to September of 2007 I could transfer myself from my wheelchair to my bed unassisted and lie down but not much else. With great effort I found that I could flip over on my stomach by bridging with my feet and back and scooting my butt sideways to the edge of the bed. At first I would haul myself over on my side, then stomach using a rope tied to the bed frame as my bed doesn't have any side rails. Running shoes or 'water socks' (slip on canvas shoes with a tacky rubber bottom often used in water sports) provide grip and make turning easier. At first I would sleep with the shoes on in order to flip at night. I soon found that this was no longer necessary and that I could push off with the heel of one foot and roll over around my other extended leg. I attribute the absence of skin related problems to my ability move around in bed. Pressure sores and infections have never been a problem with me.
I now flip around in bed back to stomach, side to side, end to end and sit up with relative ease.
Spasms seemed to lessen at the end of August of 2007.

January 2007 - became aware of trunk muscles recovering. Could lean forward and sit up rather than falling over like a rag doll. Started physiotherapy 4 times a week at local hospital. With the increasing motion a rather intense nerve pain in the legs developed. Spasms continued - quite severe at times.

April 2006 to December of 2006 - When I awoke one morning and realized I couldn't move my legs, I had no pain or discomfort whatsoever. Pain was first felt as the result of major surgery which was treated morphine but resulted in intense and disturbing hallucinations. While in initial recovery I noticed that occasionally my right leg would occasionally jump. This curiosity was to be my first experience with paralytic spasms. At the Rehab hospital spasms increased tremendously even after being placed on the maximum dosage of the anti-spasmodic drug Baclafin. Valium was added in order to assist the Baclafin action but it just made me a drowsy 'spaz'. Botulinum toxin was suggested as a therapy - full paralysis to ease the spasms. I declined.
On waking each morning I tried not to move as I discovered that soon after starting to move my upper body the spasms would start. At the Rehab hospital spasms would start in the morning and last all day long until I passed out at night. One leg or the other (funny, not both together) would start jerking, perhaps once every few seconds continue unabated all day. Spasms could be a mild annoying twitch to jerks so intense that the repeatedly lift/throw the leg up in the air and off of the chair or bed. I felt that if restrained, these violent spasms could tear tendons and dislocate joints. Morning to night - jerk, jerk, jerk, jerk.... how do you concentrate on your life when in a spasmodic state? Luckily these massive and continuous spasms have decreased in intensity and perhaps are attributed to vigorous exercise or restored neurological pathways(?).
At the Rehab hospital the physios tried to put me on a motorized bicycle in order to move my legs for exercise and circulation. It was quickly realized that my spasms wouldn't permit my use of the cycle as the bike would detect the spasm and shut down in order to prevent injury. My bike couldn't move my legs safely and I couldn't move my legs. Currently (Mar 08), I use the bike at the hospital daily and push the cycle to the upper limit of 120 rpm with half of the available resistance dialed in (6Nm). Think of it as going uphill. I usually manage to peddle the equivalent of 17 Km (10.5 mi) in a half hour period.

Spasms and Baclofen - In spite of being on the maximum dose of the anti-spasmodic Baclafin, I continued to have spasms and jerk continuously. (see above) Thinking it had no effect I gradually reduced the dosage to see what would happen. The spasmodic jerks didn't increase but what I found was that muscular tension increased and my legs would want to clamp together. It became very difficult to peddle the bike or put my pants on etc with the clamping action. I went back on the Baclafin.

Sensations & Therapy

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Sensations & Therapy

(The Progression after Injury)

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My first realization that something was terribly wrong was on waking from a foggy haze and finding that my legs would not respond to my commands. There was no pain, no apparent fever from the infection - nothing out of the ordinary except the lack of motion.

My memory is understandably foggy during that time as I was quite sick as determined by urine and blood cultures at the community hospital. The haze continued to waft in and out as I was transferred to a major Toronto hospital’s intensive care unit. I do not remember the ambulance trip there but regained some lucidness in my hospital room and presumably days later when asked to sign the usual paper work prior to my impending surgery. Empirical antibiotic treatment had been initiated with Gentamicin and Vancomycin in an attempt to eradicate whatever bacterium had invaded my system. These extremely potent antimicrobials started to shut my kidneys down while attacking the bacteria. The antibiotic was “fine tuned” to Cloxacillin and kidney function returned over time.

Post surgery was pure agony as I lived in a state of purgatory - between painful consciousness and a morphine induced hell. Consciousness brought a searing burning pain in my torso where the surgery had excised the abscesses. I had a morphine pump which I could activate to deliver more morphine (to the maximum allowed) but in doing so I was turning on extremely realistic and disturbingly vivid hallucinations with every push of the button. Death would have been welcomed at this time. I was also prescribed Gabapenin in an attempt to counter the burning pain but cannot say it was all that effective in the early days of recovery, My toes still refused to move.

Transferred from ‘Critical Care’ to ‘Intensive Care’ (as a medical health worker I remain unsure of the distinction) I continued to feel like living hell as pain and lucidness continued to poke through the haze. Full of drainage tubes and IV’s I ingested and was injected with supplements, electrolytes and antibiotics. I was aware that post surgery there would be a restriction of fluid intake, but in my mind that period seemed to last an eternity. I cannot even begin to describe my agonizingly intense thirst. I was allowed some water, sodium free soda water and orange juice in what I felt were extremely limited amounts and in my foggy mind extended far longer than necessary. I somewhat recall begging for, then trying to bribe a nurse to run down and buy me a cola from a vending machine. No luck.

Days turned into weeks as I began to spend more time conscious rather than in my hallucinatory world. Still no motion in my lower limbs. I was annoyed by this churning motion in the center of my back and asked the nurse to turn off the beds massage unit. I have no idea what response I got, but later realized that the churning sensation was due to the emergence of muscle spasms, common in spinal cord injuries.

It was probably for the best that these weeks remain on the recesses of my memory.
Alone in a semi-private room with a roommate somewhere equally as ill, I was a prisoner to my fears and thoughts. Hours of thoughts in my virtual isolation. I will always recall one sunny summer’s day when the rays were actually penetrating my dirty window, I could look out to a housing complex where children were laughing and splashing away in a community pool. How I wanted to join them.

I had recovered sufficiently in terms of medical parameters that I could be transferred back to my originating hospital for further recuperation and await an opening al a facility specializing in spinal injury rehabilitation. I continued to receive electrolytes and antibiotics while bed bound for an additional six weeks. Some limited physiotherapy was initiated bedside but this was limited to stretching.

At this point I was free of all sensation from mid chest down to the toes. Nothing! Spasms continued, not in my back but in my legs. It was almost amusing at first where I could scratch my leg and have it jump. Soon these spasms were to increase to the point where they were with me from waking at dawn to passing out after midnight. My legs would produce and involuntary jerk sometimes hourly and sometimes every few seconds daylong. Extremely annoying when trying to read as the book would jump around with every spasm. I was still too foggy to read anyways as post injury my concentration could not be directed at any task for any length of time.

Still no sensations but when sat upright without support in physiotherapy I realized that my abdominal muscles were truly gone when I would flop over like a rag doll or ‘bobble-head’ doll with the spring in the torso

Late one evening in October, illuminated only by the flicker of the overhead TV screen, I thought I notice a flicker of movement in my knees. Was that me? Or was it just the light playing tricks with my vision? No, I think they moved at will!! On waking the following morning, I tried to squeeze my knees together and yes, it was still there - a slight movement!! For reasons explained in another post, I decided to keep this discovery to myself.

I was discharged a week or two later and sent home. I had mixed emotions. At the hospital I had the run of the grounds and could find sanctuary in a tiny garden where I could read and hide from the hub-bub of the world. Delighted to be home, surrounded by familiar possessions and the love of my wife, I still felt like a prisoner. My “cell” was a thirty foot run between my living room which had been turned into my bedroom and the family room. I had TV and a computer in both rooms. Still the walls seemed to close in around me as did the winter.

I continued to try to move my lower limbs and found that my strength and range of motion improved weekly. I had a CACC (1) regional home physiotherapist assigned to me who was the first real positive and encouraging individual I encountered. With her instruction, additional exercises were added to my regime.

I found it amusing that I could not see the changes occurring within myself as well as others could. I had improved enough that there was not much more I could do by myself at home. Four months after seeing that barely perceptible flicker of movement in my legs, I could now do the “scissors” with my legs, bring my heels back while raising my knees when lying on my back. In the wheelchair I could now lift my feet off of the support and extend them straight out. Up and down, up and down, up and down - God it felt good!!
Yes, felt! Sensations had returned in varying degrees. While institutionalized, I could not feel, or had a patchy sensation from about my waste down. Now I could feel a touch right down to my ankles. Some sensations were hyper-sensitive. I could feel every hair on my leg fire if a breeze blew over my legs or the bed sheet was pulled up. I was confused. It was great to feel again, but this altered sensation and sometimes intensity was discomforting. Along with the return of sensation and motion was the presence of a burning or pins & needles sensation attributed to “nerve pain”. It can extend from the knees on downward or just from the ankles down depending on the day. Like having your feet dipped in very hot water. Gabapentin was prescribed to counter this but the sensation remains.

Needing something more challenging than home physiotherapy, I had the good fortune of being “fast tracked” as a hospital employee into the physiotherapy unit of my own hospital. I was delighted to be assigned to an aggressive therapist who was knowledgeable, positive and encouraging.

I had started out with two one hour sessions per week but that has now increased to four sessions per week. Tuesdays and Wednesdays I receive “one on one” assistance and therapy on a variety of apparatus. Wednesdays I follow a self directed exercise program under the eye of the physiotherapist. Now a fourth session has been added on Fridays where I receive water therapy in the pool.

My spasms have diminished significantly allowing me to use a ‘Moto-Ped’ assisted bicycle. With my feet strapped in, the cycle can be set to move my feet at various speeds and apply various resistance/pressure. As I had regained some movement I could actively peddle the cycle reaching about 80 rpm on my own. I now peddle the equivalent of 14 Km in about the 30 minutes I set the timer for. This cycle gets the blood flowing through the limbs and perhaps helps to reinforce the signal connecting the limbs to the brain. Next I do about 20 minutes on the ‘Hand Cycle’ which again helps to raise metabolism, strengthen the upper body and just get the blood flowing. Weights and pulleys follow, again to increase upper body strength which helps in transferring.

During assisted physiotherapy I get a variety of exercises with a variety of contraptions. The most recent change I have noticed is that my abdominal muscles have recovered quickly and substantially, again, almost to the point of discomfort. Perhaps I just have to become reacquainted with sensations I hadn’t experienced for about a year now.
I also have been placed on a “Tilt Table” which raises me mechanically from a lying position to a near standing position. This places body weight on the tendons and stretches them out as months of inactivity has caused them to contract. I also was introduced to a “Standing Frame” where the wheelchair rolls up to the apparatus and a sling is placed under the buttocks. A counterweight is added to somewhat counter my own weight. When set up I can use my leg muscles, assisted somewhat with my arm muscles to raise to a standing position. Now I can alternately stand and sit using this frame, exercising my both my leg muscles and stretching out my Achilles tendons. I do feel wobbly laterally when standing. Obviously there is much more work to be done.

Having only one session in the pool, I can only describe it as a bit of heaven in the daily hell I have experienced. Not being able to turn by myself on my narrow bed, and sitting on my butt all day in the wheelchair, creates an indescribable agony. Shifting releases the pressure momentarily but offers no long term relief, In the pool I am freed. As a canoeist with miles of wilderness rivers under my belt, I am completely at ease with water. Lowered into the pool, there was immediate relief from the pressure. I felt so at ease that I could use all my limbs and swim the length of the pool. Wonderful! It was over far too soon. Getting redressed while wet in foreign facilities is a challenge.

So now, nearing the one year anniversary of my illness and surgery, I have regained a substantial amount of movement in my afflicted limbs. The damage was not symmetrical as one side can accomplish some movements easier than the other depending on the motion. Some motions are smooth as butter and easily controlled. A few are jerky. Spasms have subsided to the point that I have cut back on my medication (Baclafin) and they usually reappear in the evening regardless if sitting or lying in bed. Spasms are often preceded by a few seconds with what feels like a pin prick and not always at the site of the spasm itself. Skin sensitivity still extends down to the ankles but is somewhat altered from what I recall was normal and the hair receptors still seem to be hyper sensitive, firing with the lightest stimulation. I am still experiencing nerve pain which can best be described as a burning or pins & needles sensation from the knees on down. Gabapentin is suppose to counter this but is either ineffective or the dosage is insufficient to alleviate my discomfort. I am still trying to get used to my abdominal muscles as they work well but don’t feel comfortable. Proprioreception is still lacking below the knees which is what tells me were my feet are in space when my eyes are closed.

What is better? Being free from pain, sensation and motion or feeling various forms of discomfort and be able to fight and see where this recovery might lead? Some days I wonder.

So there is where I stand (pun intended) one year later. I have no idea where the physiotherapy and hard work will take me. I did not want to hear negativity nor did I want to hear about the prognosis for the future. I just want an opportunity to “try” and see what might be possible.

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