INTRODUCTION, WARNING, SOME FACTS, THE ACUTE PHASE, COMPLICATIONS, THE FUTURE, MY STORY, WALKING WITH AIDS
INTRODUCTION – WHY I AM WRITING ABOUT SPINAL CORD INJURIES
I have been asked questions about my spinal cord injury (sci), so to correct perceptions and to expand understanding of this extremely complex neurological injury I’m finally writing about it.
This is not a scientific account of sci, rather, it is a summary of what I have learnt during my journey learning to live with a serious injury to my spinal cord at level T7/T8. It’s currently a work in progress.
I have been reluctant to write about sci for many reasons, some of which are deeply personal, but most relate to the complexities of this type of injury, the mysteries of neurological injuries that continue to confound medical research, and because it can be very boring
I do not wish to be pitied or admired, yet these are the main responses of people learning of my injury. I do not wish to be defined by this injury, yet this is what people usually notice about me first. I do not wish to be limited by this injury, yet many people see what I cannot do baefore seeing what I can do. I cannot speak on behalf of people who have sci because the injuries, even those that appear on an MRI scan to be identical, present in different ways zand with different complications.
This is not for the squeamish because the personal cares, when i come to write about this aspect of sci, are intimate and may revolt some people. These details are rarely, if ever, discussed in public.
First, your brain and spinal cord make up the central nervous system. The spinal cord extends downward from the base of your brain and is made up of nerve cells and groups of nerves called tracts, which go to different parts of your body. Tracts in your spinal cord carry messages between the brain and the rest of the body. Motor tracts carry signals from the brain to control muscle movement. Sensory tracts carry signals from body parts to the brain relating to heat, cold, pressure, pain and the position of your limbs.
A traumatic sci occurs when something hits the spine with sufficient force to break or dislocate or compress the vertebrae (the bone discs that protect the spinal cord) so that pieces of bone penetrate the spinal cord. (If there is no damage to the cord the vertebrae will heal like any other bone. So it is possible to break the neck or the back without incurring a sci, or any lasting paralysis. This is an orthopaedic injury, not the neurological injury I am writing about.) Most injuries don’t sever your spinal cord. Instead, they cause damage when pieces of vertebrae tear into cord tissue or press down on the nerve parts that carry signals. In a complete spinal cord injury, the cord can’t relay messages below the level of the injury. As a result, you are paralyzed below the level of injury. In an incomplete injury, you have some movement and sensation below the injury.
Non-traumatic damage to the spinal cord can occur from medical conditions like cancer, arthritis or burst blood vessel,
Ability to move and feel sensation is usually determined by how complete or incomplete the damage is, and at what level the damage occurs.
An injury that occurs in the neck (cervical spine, made up of 7 vertebrae hence an injury at C1 to C7) affects arms, trunk, pelvic organs, and legs. This is tetraplaegia, also called quadraplaegia. An injury can occur in the upper back (thoracic spine, made up of 12 vertebrae attached to the ribs, T1 to T12), the lower back (lumbar spine, L1 to L5), The bottom of the spine (sacral area S1 to S5). Paraplaegia can affect trunk, pelvic organs and legs. The higher the injury the greater potential damage.
Spinal cord injuries of any kind may result in one or more of the following:
Loss of movement
Loss of sensation, including the ability to feel heat, cold and touch
Loss of bowel or bladder control
Exaggerated reflex activities or spasms
Changes in sexual function, sexual sensitivity and fertility
Pain or intense stinging caused by damage to the nerve fibers in the spinal cord
Difficulty breathing, coughing or clearing secretions from the lungs
A complete injury at C1/C2 results in death – when someone is hanged the spinal cord is severed here.
Sci occur, in descending order of frequency, as a result of motor car accidents, rugby injuries, other sporting injuries, falls, and disease.
Many rugby injuries occur at C5/C6. Changes to rules regarding scrums and spear tackles reduced the number of rugby sic.
THE ACUTE PHASE – IN HOSPITAL
When a sci is suspected, a patient will either have her vertebrae surgically stabilised, or will spend months in bed with her spine held in its correct position to allow the bone around the spinal cord to heal. Surgery may be required to remove pieces of bone from around the cord, or to release pressure of bone on the cord.
The patient must be kept still and the spine must be maintained in its natural alignment, slightly curved. A neck injury requires that the patient not be able to move her head or neck, traction is maintained by attaching a “halo”. This contraption is screwed into the head and attached at the shoulders. A back injury requires that the patient lie on pillows placed in such a way as to keep the spine in correct alignment. The patient cannot move until the bone heals or is stabilised. This means that a catheter is inserted into the bladder and urine collected in a bag which is regularly emptied. The bowel is emptied manually by others. This is an intensive exercise that requires at least six people. Suppositories are inserted about twenty minutes before emptyong the bowel. Four people, two on each side, roll the patient on to her side making sure that spinal alignment is maintained. One person at the foot of the bed supervises this movement because maintaining alignment is so important. Any wrong movement could result in more damage to the spinal cord. Another person wears gloves and digitally empties the bowel.
Every two hours the bed is electronically turned a few degrees, left, back to centre, to the right. This helps prevent pressure on the skin which restricts blood flow to it and causes disintegration of the skin and bed sores.
Eating and drinking can be difficult because the patient must stay lying down, moving as little as possible.
Pain is managed initially using morphine. Other drugs may be administered as well eg medicine to help prevent stress ulcers.
The amount of time spent lying in traction will vary depending on the level of injury, how damaged the cord is, and if the spine has been surgically stabilised. I spent six weeks completely immobilized on pillows, then another three weeks during which I was able to be rolled onto a “prone” trolley where I stayed lying down, not moving my spine, but able to wheel myself around the ward and outside in the hospital grounds.
Once the injury is stable, the patient can be mobilized. It takes a few days to slowly sit up, a few degrees more each day. This is because, having lain still for so long the body needs to adjust to being in a more vertical position. The bed will be raised at the head a little at a time until after several days she is sitting up. Even taking days to sit up, the patient will experience vomiting and nausea. Next, the patient will move into a wheelchair, gradually increasing the time spent in it from a few minutes to hours.
While patient is recovering in bed there will be simple tests for changes in sensation and movement. Even after an MRI scan, which can indicate the extent of cord damage, changes can occur. The patient is carefully monitored for improvements and for regressions.
Complications can include skin breakdown, urinary tract infections and kidney damage, pain, nerve pain, cardiovascular disease, fluctuations in blood pressure, pneumonia, contractures, and spasticity. There are many web sites that describe complications. One that gives a good overview is http://www.spinalinjury.net/html/_complications_of_a_spinal_cor.html
Spasticity and painful spasm have been major problems for me. Medicines help, but stretching is essential and takes up a big part of my day. I have learned to integrate stretching with other activities. A useful site to learn more about spasm and stretching is http://sci.washington.edu/info/forums/reports/spasticity.asp “Stretching can be a very effective treatment for spasticity, but we need to pay attention to two things. First, the stretch must be held for 45 to 90 seconds; less than that is unlikely to be effective. Second, it should be done five-to-seven times a day and become a routine part of the patient’s daily life. Stretching only reduces spasticity for a few hours, so if you stop stretching spasticity will return.”
An excellent resource that describes sci, complications, treatments, research and possible future treatments can be found at http://www.ninds.nih.gov/disorders/sci/detail_sci.htm
MY PERSONAL STORY
In June 1993 I slipped on a big patch of ice while skiing in poor conditions. I was unconscious for most of the next few weeks, but I understand I was taken down the mountain in a banana boat, then taken by helicopter to an intensive care unit for a day or so until I was sufficiently stable to be transferred to the Burwood spinal unit. I damaged my spinal cord at T7/T8.
There was limited access to MRI scans so CAT scans were routinely done to assess possible damage to the spinal cord. A CAT scan gives a picture of bone, a MRI scan gives a picture of soft tissue. Both give cross sectional views. If you’re interested in knowing more about these scans try
The CAT scan indicated that my spinal cord had been almost completely severed. Little recovery was expected. However, the physician suggested that if I believed in god, I should pray…! Nonetheless, staff are good at negotiating a path that offers hope, yet avoids denial. After a month or more, I was able to wriggle the big toe of my right foot, then to lift my right ankle. It was thought that I might be able to do a standing transfer (move from sitting in a wheelchair, to standing with support, swiveling, then sitting down again, perhaps on a toilet or shower seat, or on a couch.
I left the spinal unit with a wheelchair, a walking frame and the suggestion I do some physical rehab at the Otara Spinal Unit, in Auckland where I lived at the time.
There was an American physio working there at the time, who believed that with supervised exercise an incomplete paraplaegic could recover more movement. I worked with her for three years, then, when I moved to Wellington, I worked for another five years with a neuro physio in the rehab unit of the hospital. I continued working out at the gym, and whenever I could I got access to a neuro physio, even for only a short time. Nearly ten years ago I started working on and off with a personal trainer who is extraordinarily talented and has a mind that works non stop in every direction. He is constantly researching for his clients and always thinks outside the box. Much of my recovery to date has been due to him.
Not long ago I experience a severe increase in painful spasm, and spasm in my right hamstring that threatened whatever ability I have to walk. A surgeon at the Burwood Spinal Unit began a programme of injecting Botox into spastic muscles. He also reviewed my medication and added to my long list. But it helped. It really helped.
Medicines I use daily include (for pain and spasm) Gabapentin, Catapress, Tramadol, Baclofen, Clonazepam, (for increased nerve activity) 4-amino pyridine, and to (to prophylactically prevent urinary tract infections) Nitrofurantoin. I was using hormone replacement therapy to manage menopausal symptoms that increased spasm but I no longer need it.
Recently I was introduced to the Odstock muscle stimulator which replaces the dictus I had been using.
Right now I can walk short distances easily but slowly. I can walk for over a kilometre. The Odstock has significantly improved my gait so that is reasonably normal. Previously. When using the dictus I vaulted on the ball of my right foot so that I could swing my left leg around to the outside and through. This out tremendous pressure on my lower spine, my right shoulder and left wrist, as well as other parts of my body.
In eighteen years my walking has continued to improve. My left side, which was completely paralyzed below the chest, now has functional strength in my upper and lower abs, and my buttock. I am gaining strength in my left hip flexor, have control of my knee, and I have some, but slowly improving, movement in my dorsi flexor and toes.
I continue to exercise and stretch. I had thought that by now I would be in maintenance mode at best. However, the muscles on both sides of my body continue to strengthen, my body alignment is improving, and there has been some improvement in my bladder and rectal function.
The Odstock nine months on:
Since I first tried walking by electronically stimulating dorsi-flexion and a little knee and hip flexion I’ve made amazing progress. Here’s <a href=”http://
To be continued