Sensations & Therapy
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.