Below is a timeline describing my injury and resulting changes in motion, sensations, pain, discomfort and recovery. A summary can be found at the bottom of this post for those not wishing to read the entire description. Medications mentioned will be discussed in an additional post.
On May 1st, I was admitted the emergency department of a local hospital where I sat in limbo for some 12 hours before a true initial assessment was made and supplement tests scheduled. After a battery of tests, it was the MRI that revealed a spinal abscess. I was started on two very potent antibiotics, Vancomycin & Gentamycin which in theory should cover all of possible bacteria which might be responsible for the infection. The bacterial culprit was identified as Staphylococcus aureus. On May 3rd, I was transferred to a major Toronto Hospital were further antibiotic intervention could be administered followed by surgery if required. The toxicity of the two antibiotics I was started on had affected my kidneys and caused them to start shutting down. Knowing the infecting organism, the antibiotic therapy was fine tuned by switching to the much less toxic cloxacillin. My Staphylococcus aureus was susceptible to it as it was not the highly resistant MRSA or Methacillin Resistant Staph aureus. (for all intents and purposes, Methacillin & Cloxacillin are identical in their mode of action.
As the antibiotic therapy did not eliminate the infection, surgery would be required to excise and drain the abscess. On May 15th, I underwent a 4 hour surgery after which I found myself in the critical care and intensive care departments. I found myself in excruciating pain and living a hellish distorted reality which I attributed to the Morphine I was receiving. As the pain of the surgery began to diminish, I realized that I now lacked any motion from about my mid chest down to my toes. The remainder of my time at this hospital was spent getting my strength back. I was finally discharged on June 28th free of both pain, sensation and movement from my chest down,
As I was not yet well enough to go home, policy has it that I should be returned to my originating hospital for additional recovery and therapy while pondering my further options. I received some very basic passive physiotherapy while bed bound. It was several weeks into my stay at this facility that I noticed that if I touched my right thigh, my leg would often jump. It was my first experience with spinal cord injury spasms (1). Other than this curiosity, I remained pain and sensation free until I finally was granted admission to a specialized spinal cord injury hospital in Toronto.
After six postponements I finally was admitted to the Spinal Cord Rehab facility on August 17th. There I went through a complete assessment by a variety of disciplines. Pins pricks were used to map the extent of my sensations which I was to discover I did not have from about my belly downwards. A variety of physical tests were administered after which it was proclaimed that I was weak. I almost felt ridiculed by one doctor in the way she informed me that I should normally be able to overcome the force applied by my cocky female intern. With a shake of her head she told me that I was weak. No s**t!! After two months in bed and major surgery, I would have suspected the same.
This was to be the first and only physical assessment I would receive until my discharge at the end of October. Other than documenting changes in my limb flexibility, this assessment closed the book on my physical state.
During my stay at the Rehab facility, I had no sensation, pain, discomfort or movement from my waist downwards. (My chest to waist was somewhat of a transition zone). The only annoyance I was plagued with were spasms. I often found that my body was peaceful on waking. Once I moved my upper body or touched my lower limbs, spasms would start and increase during the day. They would cause my legs, either one, the other or both, to jerk uncontrollably sometimes once or twice an hour or sometimes every few seconds from dawn to dusk. This could drive you crazy!!! (medication in another post)
One evening in early October, I lay in my darkened room only illuminated by the light of my flickering TV screen. Something had distracted my eye and I glanced down to the sheet covering my legs. I thought I saw a slight movement but felt no spasm. I tried to move my legs and it happened again. The sheets slightly buckled and drew taught again. Funny, I didn’t get excited as I wondered if it really was an illusion. On waking the following morning I tried again. They moved! As I found indifference and negativity to permeate this facility, I did not reveal this motion to any staff members. I didn’t want to hear that it didn’t amount to anything.
I was discharged for home on October 29th after about a half a year in various hospitals. I found myself in limbo as Christmas was fast approaching. I continued to find a modest increase in motion but it wasn’t until the end of January of 2007 that I was able to get a community physiotherapist to come to my home. At that time I was presented with a variety of exercises that I could do on my own daily. It was also in early January that I began to develop a variety of sensations. One of the first sensations I noticed was a burning pain that began to develop in my lower legs. It can only be described as somewhere between a burning pain to intense pins & needles. As if your limbs were submersed in extremely hot water. The sensation could vary from about knee level down to the toes or just from the ankles to the toes. The next sensation was that of hypersensitivity. This was first recognized when I pulled my bed sheet up higher and found that every hair follicle on my legs almost screamed. Even the slightest breeze on my bare legs could be felt with great intensity. Nerve sensations were altered as well. If I tapped my fingers on my lower legs, the action would send electrical shocks shooting up and down the limb. Any pressure would be felt as very intense or sharp. Spasms, for the most part have decreased in frequency and intensity. They seem to be worse on days after intense stretching in physiotherapy and in the evenings after having sat in my chair for numerous hours. Some spasms are preceded by a few seconds with what feels like a pin prick, not necessarily at the site of the muscle that will eventually fire. Some intense spasms are announced by what feels as if you would have stuck your toe into a 120V electrical socket. Luckily these are few and far between. Temperature sensation has also returned to a significant degree.
When I first began to receive physiotherapy at the Rehab Hospital my injury would not allow me to sit upright. My abdominal muscles would not activate and I felt as if I were a rag doll or one of those “bobble head” statuettes except that the spring was in my midriff. I would flop over. I cannot even begin to describe the awful sensation and mental impact of this inability had on me. It again was in early January when I found myself reaching for a compact disc to put in my computer drive and realized that I had actually come away from the back of the wheelchair seat. This mobility slowly increased over the next few weeks but it wasn’t until I got to the hospital physiotherapy department and started doing the mat exercises that I really noticed a significant change. Almost immediately I began to feel a tightness around my abdomen which continued to grow. With each passing week muscle activity grew stronger and more pronounced. At present I can reach around and sit up quite easily although not yet from a fully reclined position. The downside is that I feel that my middle is wrapped tightly in an elastic band. I personally explain this as the nerves which were damaged by either the initial infection or the surgery to excise the abscess now have once again had their connection restored but that the muscles they activate are still contracted or atrophied and that further exercise is needed to restore tone. I have an odd feeling that I have this active muscle layer but that the excess weight I carry is a separate layer floating above the muscles. Quick shifts of position gives me the feeling that I am “sloshing” about. Never had such a feeling prior to the injury. I am hoping that with continued physiotherapy I begin to feel as one and not as individual layers. The sensation is difficult to describe.
One rather distasteful aspect of an injury at my level (as any are pleasant) is that you lose control of your anal sphincter and bladder.. Methods of dealing with urinary problems were discussed in a previous post so they won’t be repeated here. As for the nasty anal problem; here goes - it was evident from regaining consciousness after my surgery that I had lost control of my bowels. A distasteful situation for both myself and my nurses. At the Rehab Hospital I was asked one morning when I would like to receive “my treatment”? It was never explained to me what a “treatment” was about but I soon gathered from overhearing conversations etc. that the treatment was a way of training one’s bowels to get used to a cycle where on pre-determined days (every other). I would be administered laxatives in the evening and then, the following morning, I would receive a suppository which would induce spasms clearing my lower bowels of fecal material. What was stressed was that the strict adherence to the routine was mandatory if “accidents” were to be avoided. Well, this did start to work and worked until I was discharged after which the system seemed to fall apart in spite of my dedicated effort. The suppository wouldn’t work when suppose to but would kick in half way through the day at the least opportune moment. As you can imagine this had both physical and mental consequences. Around March of 2006 it was more difficult to insert the suppository because the sphincter began to tighten (insert joke here). As nothing was working as it should I decided to scrap the entire regime and go back to square one. No laxatives and no more suppositories. And it worked. My body returned to a more normal state and I could hold my movement to some degree and go when I needed to and not when the calendar told me I was suppose to go. On my discharge there was no mention that my condition would change and how I should cope with it. Community health workers and family physicians are not well versed in this situation and cannot offer much advice. Sometimes you just have to work things out for yourself.
The only thing that seems consistent with my injury’s symptoms is that nothing is consistent! Nothing really correlates very well. Diet, exercise, stress, weather etc.? Just when I think I see a pattern of my pains or spasms, it seems to tease me and change.
Timeline - Summary of Change of Sensations;
Late April of 2006 - discover that legs won’t move. Pain and discomfort was attributed to sprained back.
May 15th 2006 - Spinal operation and Laminectomy at T-5 to T-7 level to remove bacterial abscess. Remain paralyzed from lower chest downward. No pain, sensations or discomfort other than the realization of building spasms which peaked around September to October of 2006. These are more of a nuisance than a discomfort or pain.
Mid October 2006 - discover slight movement in legs. Can move knees in and out.
End of October - discharged for home. Slight movement remains secret.
November 2006 to January 2007 - some improvement in movement.
January 2007 - start to get burning pins & needles nerve pain in legs from knees down. Spasms reduce in frequency and some intensity. Hypersensitivity of nerves in hair follicles and altered sensation of pressure. Can feel temperature changes right down to my ankles.
Legs move freely and smoothly in and out, up and down and in circles when extended straight out. Joints bend at knees but not at ankles and cannot wiggle toes. Proprioreception (2) is lost in the lower limbs. Some jerky motions or spasms (?) in the limbs and back especially when lying in bed. Abdominal muscles regained activity and can sit upright with out much difficulty and without support. Rectal sphincter control has improved immensely allowing me to abandon a forced bowel routine.
End of May 2007 - motion continues to improve although more slowly. Spasms surprise me now and then and sometimes show up in the evenings after prolonged sitting or vigorous therapy. Burning pain or tingling remains and can move up or down the legs from feet to ankles or knees but is less severe than earlier. Perhaps some improvement in proprioreception (?) as when I first started on the MotoPed foot cycle I could not pedal unless I looked at where my feet were. Now I can close my eye and visualize the motion.
Future - watch This Space -for more changes as they may occur.
See October post 'Sensations Revisited 2' with updates on changes that have occurred after May 2007.
(1) Spasms are involuntary muscular contractions or jerks caused by a spinal cord injury. These seem to occur below the level of the injury.
(2) Propriorecepton - the knowing of where your limbs are even with your eyes closed. I may not know that I have my legs crossed.
(This timeline is presented for those interested in such injuries and as possible encouragement for others that find themselves in a similar situation. It must be remembered that as individuals, we are all different and similar injuries may present themselves differently person to person. The level and severity of the injury also will determine the symptoms, after-effects and possible recovery. This is simply my story.)