Thursday, 15 June 2017
State of My Recovery -11 Years Post Injury
What follows is a long-winded summary of my symptoms and improvements (if any). I write these posts primarily for my own documentation and not so much for any interested audience I may have acquired. ‘They are what they are’ –please take them as such and read on if still interested.
Much of the following can be found elsewhere in my blog however this is simply a summary of my state of recovery and or symptoms eleven years after I first sustained my infectious injury.
I had expected to make more progress after my discharge from the rehab hospital but sadly things haven’t changed significantly. While I was written off and offered little expectation or encouragement by the “professionals”, I had hoped for and have achieved much more…but sadly not enough.
I was basically told to go home, put a quilt over my lap and live out the remainder of my days watching the sunrise and sunset from my porch. My wife was given instructions to set her alarm clock in order to turn me over in bed every four hours so that the chances of developing pressure sores would be minimized.
All told, I believe the rehab hospital did as much damage to me as did the original infection simply by such minimal treatment that it amounted to neglect.
When my wife questioned the rehab about my receiving further physiotherapy, they actually questioned why we should want to continue physiotherapy after discharge. The impression was that it would be of no use. I simply cannot imagine any competent healthcare facility arguing against further therapy. Though I trust my wife implicitly, there must have been a miscommunication.
I did receive over two years of physiotherapy at the hospital at which I was employed –three times per week. Afterwards, I joined a gym and created my own routine on any apparatus or equipment that I found I could utilize. I feel it did help though not as much as I had wished. After two years at the gym I stopped going after the equipment was changed over to models which I couldn’t find a way to use. What equipment remained didn’t justify the membership cost.
I did return to my work as a medical technologist. I am able to stand alone and non-braced for a short period of time and braced by my wheelchair, significantly longer. I can do much of what I could before my injury except for walking away from the wheelchair. I had always hoped to get back to my woodworking shop when no longer at the bottom of lengthy stairs.
While lying on my back for six months at the rehab hospital, paralyzed from my waist down, my muscles weakened and tendons shortened; ligaments also probably tightened. Muscles regained much of their strength through physio & self-directed gym work; however the tendons are another issue.
Tendons, particularly the Achilles’ tendons retracted (shortened) so that I have little dorsiflexion (lifting my foot up at the ankle) but have strong plantar-flexion (moving the foot down at the ankle). As such, I can stand on the ‘balls’ of my feet –tip-toe I suppose. As I cannot lift my foot up much at the ankle, the toes point downwards and catch if I try to take a step using a walker. I can walk using the walker but I have to lift my foot un-naturally high so the toe clears the floor. The gait, though awkward, is effective; I can walk moderate distances.
Unfortunately it is a “catch-22” situation where to stretch out the Achilles at my age would require my being on my feet for long periods of time. My injury does not permit me to be on my feet for long periods of time. I wished there was some sort of apparatus or ‘boot’ that could be worn early after the initial injury that would keep the foot bent and the Achilles in the stretched position so they wouldn’t retract and shorten. Of course, once the learned doctor has pronounced his prognosis, no further assistance is given as doctors are never wrong. Physio and gym therapy has helped to a limited degree; I can feel the Achilles stretch on gym equipment made for that purpose, but the effects are short-lived. Young developing children have very pliable tendons but as you age they lose this quality and it is hard, if not impossible to regain their effectiveness once retracted.
Injury Symptoms Remain:
Here are my remaining injury symptoms which remain to give me great grief each and every day.
1. Tightness: as mentioned above, tendons and ligaments have tightened or shortened because they have not been used as intended – over their full range. It is my understanding that muscles or tissues not used over their natural range may develop ‘contractures’ where the tissues or tissue layers permanently fuse to each other. Movement may be forever restricted unless the tissues are freed from each other surgically.
In addition to my Achilles tendons having shortened, I suspect there is some alteration around my hips as well as I cannot ‘do the splits’ to any great degree. I used the ‘abductor’ apparatus in the gym in hopes of improving this but it probably helped to regains strength but not range. This may have some bearing on my sciatic hip pain (further below).
The other location where this tightening is most noticeable is in my core. I have a limited range in twisting from side to side at my waist. I suspect it feels as if I would wear one of those corsets the Victorian ladies used to lace themselves into. The main limitation is in personal hygiene after having used the toilet. It is difficult for me to swivel and reach my backside therefore some inventive methods have to be developed to accomplish this unpleasant but necessary task if one is to preserve dignity.
In spite of constantly twisting and turning ‘in-situ’ (real life), I have not achieved any additional range of motion. While my muscles seem willing to go further, the ligaments seem to hold them back resulting in pain if I attempt to twist further. Any improvement I get from exercises is quickly lost –as if there is a philological mechanism preventing improvement.
2. Shocks: I suppose these are the spontaneous firing of various nerves with the resulting Even these vary in sensation. One feels so specific as if someone suddenly jabbed me with the point of a pin. Without any notice a pin-pint jab can cause me to jump (unexpected, it is usually accompanied by a yelp or expletive which I cannot repeat here!). They may occur anywhere below my injury site but usually from the groin to the feet. A shock as specific and isolated as a pin-prick.
Then there is what feels like electrical shocks which I can only describe as being accompanied by a kind of “buzz”. They kind of feel as if you touched a 120V electrical wire for a split second. I don’t think the human body runs on A.C. (Alternating Current), however that “buzz” I mention feels like the 60 cycles per second alternation our electricity is transmitted with. I swear I can almost perceive the buzz as the cycles alternate.
Finally there is a variation of the specific electrical shock described above. It is broader, almost a wave that spreads out over a larger area. Although they have occurred from the groin area downward, they occur more frequently in the soles of my feet. Again, they are a broader or wider buzzing shock-like sensation similar to the 120 Volt shock.
All of this shock like sensations may occur only once or they may pulse – occurring several times with perhaps a few seconds in between each shock. There are usually no more than five or ten shocks before they peter out. They offer no clue as to what triggers them and they offer no warning as to when they are about to occur.
3. Sciatic Nerve Pain: I suspect this exact sensation is unique to my injury. My injury appears not to be symmetrical (affecting both sides the same). Though my motion appears the same on both sides, they symptoms differ slightly between left and right. It seems my injury has weakened my left side such that there is pressure or stretching (which?) at the hip joint which causes the sciatic nerve to be irritated. I have sciatic nerve pain which at time can be tremendous and all consuming. When at its worse there is no escaping the pain. OTC (Over the Counter) analgesics (pain medicines) do little to ease the pain. I have tried ‘Piriformis’ muscle stretches which target sciatic pain to no avail. At worse it feels as if I am sitting with my hip joint placed squarely on a hot rock. There is no escape as the nerve pain throbs with each heartbeat pulse whether sitting or lying on my stomach. I said ‘all-consuming’ as it is difficult to think of anything else but the pain when it is at its worse.
4. Neurogenic Pain (Burning Pain): Another symptom that can be “all-consuming” in that it is hard to think of anything else when the pain is at its worse. In fact I don’t believe the severity fluctuates at all. Simply when some other discomfort becomes worse than the burning –then your attention is not entirely focused on the burning. (To not focus on a headache, hit your fingers hard with a hammer. The sensation is unique –unlike anything I have experienced before so it is difficult to describe accurately. I imagine it may vary between individuals affected and their particular injury.
The best description of my neurogenic pain that I can offer would be that it feels as if my limbs are immersed in boiling bubbling soda water with the millions of very hot bubbles continuously bursting on the inside of your limbs. There is an unpleasant “tickling” sensation as each bubble bursts after hitting the inner surface of the skin where it ‘explodes’. Some describe the sensation as having pants made of glass shards or perhaps the sparks from one of those ‘Christmas sparklers you light with a match. Internal receptor sensations may be amplified so water from the shower may feel unpleasant, causing the limb to jump. This burning sensation is with me every hour of every day and absolutely ruins any quality of life I may still have.
Gababpentin, Pregabalin (Lyrica), Amitryptaline and Nortryptaline are the only drugs I know of that are supposed to ease nerve pain. I find them of little benefit, perhaps lowering the pain level by 5 to 10%. I “grasp at straws” and accept those drugs as better than nothing, however they are not very effective. If they don’t do much good, then why do I continue to take them? Well, a drowning man will reach for a twig if it is the only thing floating around him…
5. Paralytic Spasms: “Spasm: a sudden involuntary muscular contraction or convulsive movement” –Webster. This is certainly what I consider to be a spasm to be. I believe I was given another description by my botox doctor; it was something like ‘tightness through velocity’ as he flicked my foot at my ankle (I didn’t take notes). These absolutely destroy my life! While they can occur at any time and last for any length of time, they usually occur in the evenings and can last for hours. My longest stretch of continuous spasms has been for eight consecutive hours. They started at 10:00 pm and finally subsided around 6:00 am. You cannot get much sleep when it feels as if some demon in your bedroom suddenly lifts your leg off the bed and violently throws it back down –over and over and over again for hours on end!
Usually spasms give some warning that they are about to start and they are about to begin. The leg starts to buzz much more intensely than which I attribute to neurogenic burning. My calf gives the sensation that it inflates or swells outward. The sensation that it is hollow and a million bees have bees have been let loose to bump into my skin with their stingers out. Then comes the first spasm; a quick and sudden jerk that at its weakest lifts my knee off the bed and at its strongest actually throws my entire leg around the bed. Each individual spasm may also give a half-second warning prior to the leg jumping. It feels like a wind-up spring mechanism that drove old wind-up clocks. Wind too tightly and the spring may release and unravel requiring you to wind it up again. It is that last fraction of a second wind-up and release that teases me that another spasm is about to fire. Try to get some sleep! Just try to read a book, or watch TV or do anything when your leg is flailing around; up and down, left and right for hours on end.
Again, my injury is not symmetrical. Spasms on my right side start with that creepy hollow buzzing feeling in my right calf and the spasm seems to come from both my calf and thigh. On my left side, the spasms come from the hip and lower back. I find it a curious clue that spasms occur on one side or the other. Though not always in this sequence, they usually start on my right side and then may stop or transfer to the left side. Both sides, thankfully (I guess) both sides don’t spasm at the same time. Probably a clue to the neurological pathway they take.
I am taking the maximum oral dose of the anti-spasmodic drug Baclofen. I have no longer have trust in doctors as I have been miss-diagnosed my entire life. After my experiences, I have no desire to have a Baclofen pump surgically inserted in my spine. I also have my suspicions of efficacy of the drug itself. Some length of time after I was released from the rehab hospital I was experiencing spasms in spite of being on anti-spasmodic Baclofen. It seemed to have little effect so out of curiosity I slowly began to lower my dosage until I was all but off the drug. I found that the spasms continued at about the same rate and intensity however what did change was my stiffness. I discovered that my legs seemed to pull together and were harder to spread. My only real observation was that there was a major change in stiffness and tension in my limbs –spasms, not so much. So I have to wonder what difference would pouring Baclofen juice directly into my spine would have and what side effects would I then experience?
In my ninth year post injury I started to get what I called “Atomic spasms”. These spasms exploded so quickly there was no warning as to their coming. They were so intense that it felt that the muscles were trying to disarticulate (tear apart) the joint. They would explode to the extreme limit of the joint’s movement and then try to go further. At their apex (highest point) they would not release but hold, often for seconds. The results were eye-wateringly painful spasms usually accompanied by a barrage of curse words, regardless of present company. What caused this change in the ninth year, I can only speculate. Perhaps after quitting the gym my muscles rebelled as the benefits painfully returned to pre-gym status. Thankfully these Atomic spasms have generally subsided, though not entirely.
One note on the possible effectiveness of Baclofen: Also up to my ninth year post injury the spasms I experienced occurred in the evening or at night. They would run their course and then leave me alone until the next evening. In the ninth year I began to get the ‘atomic spasms’ –an entirely different beast than the annoying, repetitious spasms. What I also observed was that if the annoying spasms ran their course and stopped before bedtime, I could sleep uninterrupted until morning. In the ninth year this changed. I now may wake during the night and the simple act of turning over to another side may trigger a (few) spasms which usually however these will not continue on for hours. So, I may be wrong. The Baclofen may have some effect on my spasms after all. The efficacy of the drug may be wearing off after nine years of constant usage. The body may metabolize or circumvent the drug allowing spasms to initiate more frequently. Regardless, the majority of violent, long-lasting spasms still occur each evening to late night. This same metabolism or circumvention of Baclofen may account for my increased core stiffness.
So what is the exact mechanism that fuels these spasms? Are we dealing with an electrical pulse for it symptoms sure exhibit themselves as a shock? Zap! Zap! Zap! Or is it the constant drip of neurotransmitters across the gap? Drip – Fire! Drip – Fire! Drip – Fire! It is the closest thing to perpetual motion than I can think of. I could never lift my leg up and drop it down every few seconds for up to eight hours. I suspect I would be sore and exhausted - unable to raise my leg after fifteen minutes of exertion! Spams that fire roughly every 6 to 10 seconds for hours on end! Urgh!!!
So nightly I wait for the rhythmic spasms to begin causing my leg to jump and jump and jump – rarely, if ever for minutes but usually for hours on end. It is pure ‘hell on earth’ –worse than the paralysis itself and destroys whatever quality of life may still remain. At the risk of being “politically incorrect”, the perpetual spasms are like ‘Chinese water torture’ where a victim is restrained and from a reservoir and bamboo spout placed above their head, a single drop of water drips, drips, drips every few seconds upon their forehead. Such a seemingly innocuous method has the victim ready to confess any and all secrets within a day if not hours. I have no secrets to offer to stop this torture. It will continue perhaps daily and surely every night for the remainder of my life. And because of this never ending torture I have been broken and I’ve even cursed my God now on numerous occasions. There is and will be no salvation for me…
“I hope I feel awful tomorrow as awful would be so much better than how I feel today”
Now, what has improved over 11 years post injury?
Because my spinal cord injury was due to an infection and not physical trauma, the progression of my recovery may differ from other paraplegics.
When you have an infection, the tissues respond by swelling which physically contains the bacteria much to the site of infection. Fluids and white blood cells from the lymphatic system infiltrate the area in an attempt to destroy and mop up the invading organism. The act of swelling can have a deleterious effect on the spinal cord by exerting pressure and perhaps reducing blood flow. The body’s self-defense mechanism may actually aid in the damage which occurs. (The same is true for physical injuries due to a cascade effect of substances triggered by the injury –but that is another matter).
I believe that this response to my infection caused additional damage to my spinal cord. I have reason to believe this as when my wife first saw me post-surgery, she said I was tremendously bloated and swollen. She also said I could move my feet at that time which I could no longer do days later. To continue, I became infected sometime in April and it was only in early January of the following year that I believe that the swelling receded enough to allow what neurological signals I had (motion and pain) to be transmitted along the spinal cord. Before leaving the rehab hospital in November, I noticed I had regained some motion in my knees (slight movement in and out). In January I suddenly realized I had regained some control of my core and could sit up or back against the backing seat cushion. Soon after I realized I could lift my feet back and forth between the wheelchair footrests and the floor.
Two-plus years of physiotherapy, three times a week helped maximize my strength and range of motion. It took some time longer to regain proprioception (knowing where in space my limbs were).
Sitting in my wheelchair I could exercise anytime by lifting my legs up in front of me. (Sorry, my Grey’s Anatomy is packed away.) That was fine for strengthening my (upper) thigh muscles. Unfortunately the muscles on the underside could not receive the same attention as I cannot bend my legs back as my heels hit the wheelchair frame. It was a lop-sided sort of exercise.
I had hoped the gym equipment would help strengthen those and other leg and core muscles. After just over two years at the gym (2 to 3 times per week for about two hours at a time), there was some improvement but not to the extent I had wished and the improvement did not translate into improved or independent mobility. As I mentioned before, I stopped going after the equipment was swapped out for newer models on which I couldn’t find a way to safely use.
I felt that this was about as far as my efforts would take me. I returned to work and worked for an additional five years until I accepted early retirement. I retired not because of any hardship, though there were plenty of challenges, but rather because the hospital at which I worked merged with another and consolidated the laboratories. There were just too many staff members and my age and years of service qualified me for early retirement.
I am fairly independent as I can live on my own if I must. My wife is out of town frequently and I can do all the chores, unassisted, that I need to do for daily living. I hope to find a way to get back to my wood working. I have a basement full of industrial quality equipment and only need an accessible location to reconstruct my shop. (I have just moved to a new location). Time will tell.
In my mind I find an apparent disconnect between my injury and my debilitating symptoms. Over these eleven years I have regained motion right down to having weak yet obvious motion down to and including my toes. I have the sensation of touch and of temperature in my legs though not as acute as before my injury. But I can move a few toes, I can stand on the ‘balls’ of my feet, I can stand up from a sitting position (some help by pushing on the armrests occasionally helps). And I can stand freely for some short periods of time and braced (back of the legs) for longer. In the gym I could press several hundred pounds on the inclined-leg bench-press and could even kick some smart-ass in the pants if the situation warrants. I can walk some distances with the assistance of a ‘walker’ though my problem in doing so is more mental than physical. I have a sensation of loss of balance, more so from not having walked for so long rather that the inability to maintain my balance.
So, in essence, I can do just about everything with my legs except for walk away from my wheelchair!
I sympathize with those who have recently received a spinal cord injury. Heartbreaking stories appear in the papers of people vowing to fight hard and walk someday. I say “good-luck” to them. I hope they do and for some reason some people regain the ability to walk. I don’t wish to ‘rain on anyone’s parade’ but as I have described with my injury –I have regained almost all of my pre-injury motion yet after years of physiotherapy and persevering determination, I still sit bound to a six-wheeler.
It is almost as if the body actively works against recovery. The stiffness! Any stretching out is lost within minutes of stopping. I have found that the paralysis itself, the inability to move, is the least bothersome aspect associated with spinal cord injury. What destroys your outlook, your joy; your determination is the never ceasing tightness, shocks, burning and most of all, the spasms.
“I hope I feel awful tomorrow as awful would be so much better than how I feel today”
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