About Spinal Cord Injuries

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

WARNING

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.

SOME FACTS

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
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.”

THE FUTURE
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

http://www.listen-up.org/med/ct_mri.htm

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 Iโ€™ve made amazing progress. Here’s <a href=”http://

“>how the Odstock works:

To be continued

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37 thoughts on “About Spinal Cord Injuries

  1. Hi, my partner had an accident early this year which resulted to spinal cord patient at the level T1-T5. will he be able to father a child?

  2. The potential risk with using antibiotics prophylactically is developing resistance to them, but That’s not considered a problem in SCI.
    If your partner wants to move to a city and can move anywhere, if I were in his situation I would research the spinal unit with the best outpatient clinic and go there. I wouldn’t want to live in a small town, there would be no expertise ibpn treating SCI.
    He needs regular annual checkups, sounds like he needs s team assessment. I have been treated by a physio who grew up, trained and worked in the UK before moving to New Zealand and she has far better training than physics from other countries. I don’t know what access is like in the UK but I understand that there are some outstanding spinal units.
    He has to be motivated though, you can’t do it for him. In my opinion, a relationship with someone with a SCI is the same as a relationship with anyone else. It’s got to work for you as well as him. But you might be able to access counselling – another reason to be living near a spinal unit with good after care facilities and outpatients.
    On the flip side, My husband resented me for years because I broke my back and everything changed for him. He had to grow up and stop depending on me because I didn’t have the emotional resources to carry him anymore. It took years for him to grow up and it’s a work in progress for him. I think that trauma like this shows up all the flaws in your relationship.
    Look after yourself ๐Ÿ™‚
    ,

  3. Hello, my partner has a supra pubic catheter, five months now. He seemed not to be getting urinary infections for a couple of months but then got one. Since then it hasn’t really gone and e has been subscribed same antibiotics, same dose, three times in last three months but no relief.
    I’m very worried about this as I know kidney infections are one of the commonest causes of death, he’s incomplete T4/5 paraplegic. No movements or sensation other than pain below there.
    I spoke to a Doctor friend who said I was absolutely right to be concerned. My partner won’t discuss it with me or his doctor. He’s very private and stubborn but doesn’t take care of himself. I’m getting to the end of my tether.
    Rose

    1. I’m not a doctor so I’m only speaking as someone who has a spinal cord injury and knows of others with spinal cord injuries.
      Sounds like maybe he has developed resistance to that antibiotic.
      Also, maybe he needs to take an antibiotic prophylactically, That is, he takes a low dose of antibiotic every day forever. (I do intermittent self catheters – I use a catheter morning and night to make sure that my bladder is empty – and I take an antibiotic prophylacticly. It’s difficult for women to do “clean” catheters. The bladder is a sterile environment and when you insert a catheter as I do, or a supra pubic catheter, as your partner has, you are introducing the potential for bacteria to grow. An infection in the bladder can lead to infection in the kidney and untreated you can get all sorts of problems.

      A supra public catheter is more likely to lead to infection than using a catheter, and here in New Zealand, a supra pubic catheter would have been removed after the acute phase. A carer or support worker would be inserting a catheter as required for him if he can’t use his hands.

      Is he under the care of a spinal specialist? A family physician? Sounds like he needs to be referred to a urologist. It’s odd that any doctor would not have referred him to a urologist by now.

      And it’s odd that he still has the supra pubic catheter.

      I’m happy to try and answer any more questions.

      1. Thanks for your quick reply. It seems different here (UK). He had a normal catheter since it happened eight years ago and I encouraged a supra pubic as they are much less liable to infection, doctors encouraged that for the same reason. It seemed to work but the infections are coming back. Previously he had them constantly. He lives in a small town and I think his care is poor. There has never even been suggestion of a urologist. He gets no physio and only a nurse taking bloods weekly to check warfarin levels. He wants to move to the city but is scared of the change and the different health workers. Is there a problem with prophylactics? I heard they had their own side effects long term. I don’t think he’s ever come to terms with what’s happened and doesn’t really care what happens to him now. It breaks my heart but I don’t know if there’s any point being around as I’m getting really tired and depressed myself.

  4. Did you feel lot of pain in your back? I fell and can’t walk. But pain is in lower area knew legs all bruised. Possible breaks. But can’t move am in bed .now can use arms. ..need xrsys.
    Back aches but would I have pain if spinal cord injury or vertebrae? Very worried.
    Thank you.

    1. Doctors or nurses with experience in spinal cord injuries can usually identify damage to the spinal cord, but an MRI scan is the best tool for diagnosing damage to the spinal cord.
      Everyone has a different response to spinal cord injury (SCI) My own is that I have no pain in my back, but a lot of neoropathic pain in my legs. My injury is at T7/8 which is in the upper part of the back but well below the neck.
      Usually the first evidence of a spinal cord injury is loss of movement and sensation. Depending on the level of the injury, this loss can most easily been seen in the hands and/or feet.
      Can you move or feel your feet and toes? This can be the first step in exploring whether you have a SCI.
      You can damage your vertebrae without damaging the spinal cord within. The vertebrae are the bones that protect or enclose the spinal cord.
      Damaging your spinal cord is much more serious.
      What information has your clinician given you? What sort of hospital ot ward are you in? If the clinician suspects any damage to your spinal cord, the best place for you is a specialised spinal unit. SCI require not just managing pain, but you can lose function of the bladder and bowel.
      I suggest you ask your doctor specifically about the possibility of a spinal cord injury.

  5. It is so good to hear others’ stories. I had a bicycle accident 20 months ago. I relearned to walk and I aspire to run again. I fractured several vertabrae lowest C7. I was told that my standard of where I want to be (as far as normal) and the docs is very different. I believe I can train my body to do what I want it to do. I have gained much of my strength back but the control is not there yet. I walk like frankenstein, with staggered movements. My right side was more affected. Physical therapy has about given up on me. They had already released me until I pushed to return to get more guidance. Spasms are awful and so is the nerve pain. I pray daily – first thanking God it was not worse and then asking for a healing hand.

    1. Hi,
      I suffered from terrible spasm and all sorts of pain, but this is reasonably well managed with medication and stretches. I take a cocktail of medicines – gabapentin, catapress, tramadol, baclofen and clonazepam. I have a tens machine to help with neuropathic pain especially when it is extreme. Getting spasm under control and reducing tone has helped me strengthen the opposing muscles. For example, reducing tone in my quads has allowed me to strengthen my hamstrings.
      I do lots of balancing exercises
      I try to improve ptiorioception by walking on a stone mat.

      I have a friend who injured her spinal cord at c4 about six years ago. She walked with crutches and had a lurching stumbling gait. She worked on her own to improve her gait because she found that the physios were discouraging. After about two years she walked without crutches but people sometimes thought she was drunk. Now she walks with what seems like a normal gait, though if you look closely you can see that she has less control over her right side.

      All I would say is keep exercising. You have nothing to lose and everything to gain ๐Ÿ™‚

      1. Hi

        Can you tell me please after how long the injury did your friend first start to move her legs or toes ?

  6. My partner is T4/5 incomplete post spinal cancer surgery five years ago. He has spasms and spasticity, helped by massage, and is in a wheelchair. He cannot stand or walk. It seems back massage is more helpful than leg massage. We have only been together a couple of months and I’ve only massaged him twice. First whole body, myofascial release on arms and back which relieved lower back pain and spasms. Second time just his legs and no change.

    He’s not been offered much except physio, could the Oldstock help him regain movement at all? He has some slight sensation in one area around his right anterior tibialis. No bowel or bladder control and no sexual feeling other than the occasional erection. He has very little to no sensation from below the ziphoid.

    1. The Odstock is an FES unit (functional electrical,stimulation) that stimulates an involuntary muscle contraction when electrodes are appropriately placed on or near a muscle group. FES can also be used in exercise mode where it is set to stimulate a weak muscle for, say five seconds, then rest ten seconds and during the rest period the user attempts to voluntarily hold the muscle contraction. Your partner could ask the physio about the possible benefits of using FES. It has to be set up by a physio anyway. The physio may refer your partner to another physio who specialise in FES. There are quite a few different FES units. The Odstock is primarily for drop foot (providing dorsi flexion) so a less specialised unit might be worthwhile investigating.

      Has your partner tried a TENS machine for managing pain and spasm? A TENS machine is also FES but is primarily for managing pain. I mention it because you wrote that massage helped lower back pain. I place the electrodes of my TENS machine on either side of my lower lumbar spine and leave them there for about an hour. That also helps with neuropathic pain. Again something to ask the physio about.

      I found that by reducing spasm I discovered that opposing muscles had some weak voluntary movement.
      There are various ways of standing and walking mechanically (full leg callipers with gutter frame) with and without electronic stimulation. The physio should know about these – a neuro physio would. It’s really important that your partner has a neuro physio.
      Does your partner use a standing frame? It is important to stand for an hour at least four or five times a week, every day if possible.

      As far as sexual function, there are lots of sex aids (toys) that your partner can use to satisfy you. Depending on where you live, specialists in a spinal unit can advise on sexuality.

      I live in New Zealand and both spinal units here can give comprehensive advice on sexual matters. They both have spasticity clinics. One has more expertise in walking gait, however, in my experience, it is neuro physios in the community who have experience with improving movement.

      I hope some of this helps

      Regards

  7. Hi my name is Harry. In Feb. 2015 I was in a very bad accident, which landed me with a L1 burst. I do beleive in God and that is how I servived. If I were 3 inches taller wouldn’t have made it. I am diabetic so I got alot of nerve damage on the bottom on the bottom of my right foot. My spinal injury is a Carda Enquine Syndrome. They say it is rare. I have full use of my legs but lost control of my bowel and bladder. My anal spinctor doesn’t close and my bladder spintor doesn’t open. Interesting to say the least. My buttocts are swollen and makes sitting on hard chairs very uncomfortable. Reading Terasa’s story about her brother gives me hope. Thank for your write ups.

  8. Thank you for your support. It was a grim week where at first it seemed he was doing better but the truth is the c2 vertebrae has displaced causing his right arm to get weaker. He’s undergoing surgery this evening or tomorrow to stabilize his c1 – c2 vertebrae. It’s a big operation and I can only keep hoping he pulls through and the doctors know what they’re doing.

    So far I’m not impressed by them. There was a miscommunication between the doctors and nurses, they said he can remove the brace. So a nurse comes in and REMOVES HIS NECK BRACE. I couldn’t believe it. Sure enough all day he laid in bed without his brace until later that evening the doctor came in and told them there was a miscommunication that the brace NOT to be removed. Well no s**t. I’m no doctor and I could have figured that one out with my eyes closed.

    Today we visit him and I will be mentioning about you. So if your ears are ringing there’s a stranger out there telling your story m’dear to someone in need. Also find me on that facebook site if you’re on it. I rarely use it but I invite you to message me and to stay in touch.

    Our family thanks you in advance,
    Charlene

    1. It’s not the doctors who you should be worried about, it’s the nurse who removed a neck brace! That’s unbelievable! Nurses are the daily care givers, and their competency is extremely important. Their experience will often pick up changes or things that they bring to the doctors attention. I expect that on his ward patients will be allocated a nursing team and there will be a team leader. Given the importance of the nursing care, I suggest you find out the nursing structure and if it is as I describe,my ou speak with the team leader.mfind out everything you can about the daily care. Some of the details will be unpleasant – I Assume his bowel will be manually evacuated by a team of nurses who will turn him, keeping his spine in place, a leader who monitors the correct position and a nurse who will do the evacuation. Find out his routine – bed baths, physio, tests, doctors rounds, meals. Is he eating or being tube fed? How nutritious is the food? Find out their approach to pain. Find out the consequences for the nurse removing the neck brace. This is not miscommunication, it’s incompetence – but don’t make a big deal of it, you want the nurses and everyone on your side. Nurses are human and you want them to favour your father in law.

      Surgeons will be operating on your father in law. You could ask how often the surgeon doing the procedure has done it before and for an assessment of the risk. C1/C2 isreferred to as the hangmans notch – C1 delivers nerves to the heart and lungs. It’s frightening to consider, but damage to this area could result in life long reliance on a ventilator at best. This is why the surgeon will be needing to stabilise these vertebrae. Has a surgeon (not a doctor) explained the risk? Have you met the surgeon doing the procedure? Your father in laws nurse (he will have more than one, so don’t ask the incompetent one) should be able to provide a less clinical but important view as well.

      It’s hard to know what questions to ask when you don’t have information. It’s a catch 22.

      Other patients in the spinal unit, those further down the track, might also offer advice eg most approachable nurses, best physios. There may be a dining room or computer room or family room, or lounge room where these patients hang out,. Try talking to them about their experiences. A spinal unit tends to be far less clinical than a hospital because of the long stays.

      You will find me on Facebook Denny Cavanaugh. You can pm me and either talk through that or I’ll give you my email address.

  9. I read your story carefully and it gives me peace. On November 17th 2015 my father in law had a terrible accident. Even though retired he had an extremely active lifestyle, he worked harder than the average 30yr old and being a retired cop he’s very fit for his age (67) Sadly that’s all on hold now. That day while pruning a tree for one of his customers, the last cut none the less, the branch gave way knocking his ladder making him flip 180 and landing on his face. He fell 15ft and throughout the entire job he wore his harness.. this was just one last quick cut. Upon impact his breathing was cut. If it wasn’t for a neighbor watching him he would have died right then and there. The man did cpr on him.
    At the hospital he’s in stable condition. He sustained a C2, C3 and C7 fracture. The doctors are amazed he lived. He can move his left arm, some of his right. He can stand on his legs with help of course. Patches of numbness on his shoulders, right hand, some torso and toes. But he sits up to be fed. He squeezed my hand amazingly well with both of his hands.
    Tomorrow he starts physio and I am praying everything goes well and somehow everything improves.
    I will some day pass him your write up because of your honest and truthful information. I’m thankful to have come across it. I hope this message is well received.
    char

    1. Thank you for telling me your father in law’s story. It seems that his injury is incomplete, and, given how recent the injury is, there may be significant recovery over the next few months. It’s very hard to know how much recovery, because every injury is different, every person is different.

      I am now 61 years old, and I have continued to improve over the years. I’m not sure when I made the last entry to my blog, probably about five years ago when I began using the Odstock. I had thought that by now the best I could hope for was to maintain the gains I had made. But no, over these last few years I have continued to improve. Nerves continue to reconnect and muscles begin to twitch then strengthen as the physio helps me target exercise to those weak, but strengthening muscles. This is 22 years after my injury! Research is beginning to prove that daily targeted exercise can result in new neural connections.

      My motivation has been simple. I had young children with whom I wanted to play. Now I have grand children with whom I love to play. Being fit allows me to crawl after the babies, play on the floor and love them to bits. I prefer to stand than sit. I prefer to walk than wheel. Using crutches allows me to access other people’s homes, restaurants, climb stairs and do many things that can’t be done in a wheelchair. I’m not self conscience. When people tell me I look like I’m struggling, I laugh and tell them that it’s easier than using a chair.

      I still have to use the wheelchair from time to time. I wheel down to the local beach with my crutches on the back of the wheelchair, I wheel up to the local shops. I’m confident and happy and independent.

      The biggest problem has been pain and spasm but medicine has improved vastly since I first damaged my spinal cord. It’s well managed now. My spasm didn’t start til a few months after the injury and the pain worsened. But with the advances in medicines, exercise programmes, stretching techniques and understanding of spasm, things have changed.

      It may take a few weeks for your father in law to get his head around what has happened. It’s surprising how the brain can protect itself.

      And close family members may resent what has happened. It took a long time for my husband to get used to the new dynamics.

      Anyway, good luck!

      You or your father in law are welcome to email me any time.

  10. Loved reading all your information I have spinal injury T8/9 incomplete iv just received botox in right thigh for severe spasms which have stopped me walking ,I’m now trying to walk again but the pain it leaves me in at night all my body aches ,did you experience this when learning to walk ? X

    1. Yes I get pain after exercise, less now than earlier. I don’t have normal sensation, but I did, and still do, experience neuropathic pain which increases after I have had done a lot of walking. Also, my right side is stronger than the left and keeps trying to do all the work. Initially I could only walk by swing my left leg round and leaning over to the right. Consequently, L4/5 have fused and even though I walk with better alignment now I get sharp pain through my right hip. I manage the neuropathic pain by taking gabapentin, tramadol and clonazepam. When the pain increases because I have done a lot of walking and exercising , I take extra tramadol.
      I also use a roller (like you get at the gym) and roll out my quads, hamstrings, glutes and hip flexors and anything else that feels good. I have made a stone mat from different sizes of stones and I walk on it barefoot, as well as rolling my hips and legs on it. And I keep moving and stretching. Stretching is really helpful, and I sit, lie and move around on the floor when I am watching tv. Even just lying on my stomach and rolling my hips helps the pain from exercise. I just keep going and the pain eases, then as I step up the exercise again my legs and hips and butt get sore again. But I keep stretching and keep going,and I guess over time the pain from exercise has lessened quite a lot,mu til I make another gain in movement.

      Keep moving!

  11. I took a fall off a horse in July 2008 injury complete T7 paralysed from the bra line down. Thrown to one side in Rehab centre Ireland as I was never going to walk received little or no physiotherapy. Compressed spine operated on to stabilise spine? Can you give me any advise to improve my situation or have I left it to late?

    1. Hi Sarah. I’m not sure what your expectations are when you ask have you left it too late to improve your situation. Whether you are complete or incomplete you can always “improve” your situation. It’s important to keep your joints mobile and to weight bear. You will need physio to avoid contractures and to do stretches. You can definitely work on maintaining and improving your health. It’s not good enough to be tossed to one side because you won’t walk. It’s not good for your bladder and kidneys to spend a lot of time sitting. Spending time on the floor and stretching is really important – and you may need assistance to stretch. In NZ we are very fortunate to have ACC which picks up the cost for all rehab for the rest of your life. And whether you are incomplete or complete you are pretty much undergoing rehab for the rest of your life. You will need assistance from health professionals to do that. You will never know how much movement or sensation you may or may not get back unless you are always testing the boundaries. Without stretching and exercise you are likely to lose. I’m not a health professional but I recommend trying anything that will maintain and improve your health.

  12. Hi thanks for the article. My daughter was in a car accident on the 29th of June 2014. She fractured T7 and T8. The spinal cord is compressed. She is a paraplegic at the moment. She developed a pressure sore on her buttocks and because of that she could not be operated. She still is not operated. She uses the wheelchair with a brace on. The hospital where she is at the moment’s OT and fisio departments is training her to use the wheelchair and train her to use the toilet and so forth. The doctors says that they are not going to operate because the bones is healed. But the spinal cord is still compressed. It i not going to heal if it is still compressed. My question is, is it necsesary for them to operate or not. She has a hump on her back where the injury is. Thank you

    1. I’m sorry to hear about your daughter.
      The only reasons I know of to operate on the vertebrae is to stabilise them so that no further damage occurs and to speed up the recovery time. There is always a risk in spinal surgery that the nerves can be damaged further. Once the bones have healed there is no need to operate because the spine is stable.

      I did not have surgery to stabilise my bones, instead I was kept in bed in a position that allowed the broken bones to heal in the correct position. I was kept in bed for nine weeks. I have a bump and then an indentation where the injury occurred. It is preferable to allow the bones to heal rather than operate.

      In my case it is almost certainly because my bones were allowed to heal naturally that I had some recovery.

      It is very unfortunate that your daughter developed pressure sores on her buttocks. This is usually avoided by being turned slightly every two hours. The hospital where I was had an electric bed that allowed the staff to turn me a few degrees clockwise and anti clockwise and to be flat. It only requires very small movements. Pressure sores can take a very long time to heal.

      As well as learning her personal cares (I assume she will emptying her bladder with a catheter, and manually evacuating her bowel) she will need to be careful to avoid pressures sores. They are especially prone to develop on toes, heels and buttocks. This will all become second nature to her and just a normal part of her life although it may seem difficult to others.

      Physio is really important. It’s hard work. Really hard work. But with persistence your daughter may regain some movement and at the very least will build up her upper body strength and strengthen whatever movement she has, and help avoid injuries.

      Once her bones are healed your daughter will not do any more injury to her spinal cord and she can exercise and move. Exercise, stretching and movement are essential to her health. I hope my comments help.

  13. Thanks for your article. I was in a car accident where our car left the road in the mountains and went into a canyon at highway speed. I had a T 12 incomplete with 80% compression of my spinal cord and told I would never walk again. Being a hard headed nurse that was not good enough for me. I fought hard to regain my strength back and walking quite well with a cane or forearm crutches most of the time. I can even take a few steps without anything as long as my AFO’s are on. But…I am sad to say after all the hard work my feet cannot stand to walk more than 15-20 min without intense neuropathic pain even though I can’t really feel much in them. This is so hard to explain to anyone non- medical and even my medical friends as we’ll. I don’t thinking truly understood how bad the neuropathy pain was for diabetics until I had this to deal with myself. Needless to say since I cannot feel my feet I get blisters easily and with decreased circulation they don’t heal and now I am back to needing a wheelchair which is a HARD pill to swallow! Any others like me? Any advice how to accept this?

    1. All my activity is geared toward not needing to use a wheelchair so understand when you say it’s a HARD pill to swallow. I have at times put neuropathic pain on 9 on the pain scale.

      I’m not sure why you get blisters on your feet so easily. I can only pason to you what I do to prevent pressure sores on my feet, and how I manage neuropathic pain. Maybe you’ve tried it all, maybe not, but here goes.

      My shoes are custom made and I only wear one style that I have found I can best walk in. They are like running shoes. They lace up, have a very soft leather lining with a fabric and leather outer. The leather gives support to the shoe but it is carefully placed so that it doesn’t give me pressure sores. Whenever I get a new pair, even though they are made to the same pattern, I wear them for only a few hours before checking for pressure points.

      I only wear shoes when I am walking outside. This means that I heave myself around inside and have to use my arms and shoulders to get my feet through. But it’s worth the effort to have my feet free for a while. While inam barefoot I take time to walk on stones. I gave made some boards that have stones glued to them. I use stones of different sizes and textures. When I made them I asked my daughter to check that she couldn’t feel any sharp bits that I could hurt myself on. I walk on the stones for a few minutes at a time.vsurprisingly the stones help reduce the neuropathic pain, and for some reason my body responds well to the stimulation. It just “feels” good. I sit on the stones and roll about, moving whatever bits of my lower body I can over the stones. This helps the neuropathic pain.

      I check my feet every night for signs of pressure sores, any redness or change in skin colour. I’m really careful not to knock my bare feet on furniture or anything like that

      I use an exercise roller to roll out muscle tension in my legs. It is particularly helpful under my calves and on my quads. I think that it helps with circulation. It also helps with neuropathic pain.

      I exercise regularly at the gym and do lots of stretches during the day. Lots of stretching and exercise. Exercise and movement helps with the pain, and helps circulation.

      I take a lot of medication to help manage the pain. I take gabapentin, catapres, tramadol and clonazepam drops. I also use baclofen but that’s for muscle spasm. I also take a drug that was registered a few years ago by the FDA a few years ago for the treatment of multiple sclerosis. I know it as 4 amino pyridine, but it’s generic name is fampridine and I think the Trade a name in the US is Ampyra. I have slowly gained muscle movement and sensation since taking it. It is not directly for neuropathic pain but with increased sensation there is less “static” and less slightly less pain.

      I use a tens machine at night sometimes when the neuropathic pain in my legs is unbearable. I put the electrodes on my lower back and this eases the pain

      I avoid sitting because this aggravates the neuropathic pain, so using a wheelchair would be a nightmare for me. I live on the floor. I lie on my stomach to do most things or stand up. I’m standing as I write this on my I pad.

      I don’t know if any of this helps you. I know someone who has neuropathic pain in her feet and almost nothing works to help. She does find that using ice on her feet helps. I use to put my feet in a basin of cold water but the meds and other things help me more.

      I regularly visit the spinal unit where I was admitted after the injury. The Director is very helpful and is about the only health professional who truly gets the extent of the pain. I have met very few people with spinal cord injuries who experience the amount of neuropathic pain that I do. I do what I can to manage it myself. Doctors at the spinal injury unit have been helpful in pursuing pharmaceutical options and they have over time prescribed lots of different drugs to try, most of which haven’t helped, but I have found some helpful.

      I have recently become aware of the surgical implantation of an electrical device to manage pain. I’m not going to pursue it because I think that I’m managing the pain reasonably well now.

      I’ve had a few pressure sores on my feet but they haven’t stopped me walking. An orthotist, the one who makes my shoes, and a podiatrist have come up with ways of protecting the sore, usually by placing a sort of felt around the sore and leaving a hole where the sore is. The felt takes the pressure off the shoe and leaves the sore untouched. A Physio has helped come up with ideas for equipment and exercise whenever my mobility is reduced

      Neuropathic pain is debilitating. It’s stopped me from working, it has stopped me from sleeping, it left me exhausted at times, and at times I’ve wanted to scream, and have. I consider myself really really lucky that I’ve found ways of managing it.

      I hope that your blisters heal to a point where you can walk again. And I hope that while they are healing you manage to exercise and maintain as much mobility as possible.

      Good luck

    2. Jeannette I know this is years later and I don’t know if you will ever read this, but I just wanted to respond to you and say that YES! I’m like you!
      I am a 40yr old gal (39 at time of injury), was also a nurse (LVN long time ago). My SCI was a medical injury during a surgery in June 2016. My injury is L1-4/5. I have damage from mid pelvis down. The worst damage was to my lower legs and feet. I thankfully have bladder function and most bowel function but it is impaired- I literally no longer have the ability to hold it. I was in impatient rehab for over a month then went to outpatient. And I am exactly like you in that I can walk with arm crutches or a cane and I can walk for a bit with AFOs and no other assistance, however it’s not for long because after about 15-20 minutes sometimes just 10 the pain makes me have to sit and so I use my wheelchair mostly and save my walking and standing for the house. So far I haven’t experienced any blisters on my feet though. I did have a lot of neuropathic pain in my feet but now it is pretty well controlled with Lyrica. I try to wear very light shoes or even go barefoot when I can because I think I can walk better without the extra weight of shoes. I wanted to let you know what a blessing it was to read that there was someone out there so much like me, ๐Ÿ˜„ someone who really understands and just to know that I’m no alone in my experience. Thank you so much for taking the time to share your story. I pray for you in your recovery.

      And to Denise, Thank you ๐Ÿ˜Š for sharing your story it’s so helpful for those of us out there who are new in our injuries to be able to read about others experiences and share with them.

      In His name,
      Dallas

      1. Thank you for sharing your story. So much has happened since. I’ve had two knee replacements year apart to the same knee (right) due to the nerves not firing in my right gluteus to help me walk correctly. Therefore my right knee wants to fall in like a knock kneed person, thus wearing out my knee fast and loosening the new hardware within a year. I have very poor balance and fall frequently so it’s not all roses to walk but I get back up again. I broke my left foot one year ago in March when I caught my left foot on the door jam walking around the corner of our LR. I fell on our living room floor. Again thurs night I turned around to grab my cellphone and I tripped and fell onto my crutch bruising my abdomen, left hand/wrist and left foot rolled under me and ER doctor said it was fine. Just as she gave me d/c papers the radiologists called and said it might be broken. Going to see ortho doc tomorrow. always something.

      1. Denny here, re your question about how soon could my friend move her arms and legs. Initially she had no sensation or movement in either her arms or legs. She began to get movement in her legs after about six weeks, shortly after that she could stand. After a year she could walk without crutches.

  14. It’s devastating to experience SCI, and I’m glad that technology innovation helps a lot to develop modern equipment and treatments that help patients to recover even faster.

  15. My son has had spinal cord compression of t12 due to cancer. he was told it was not operable. I read so much about people who have regained use of their legs after months of paralysis. Is this right. Can you please send me any information you have that will be helpful. Thank you

    1. I’m so sorry to hear about your son.
      There are people who have regained mobility months after paralysis. Trauma to the spinal cord can cause swelling and often the full extent of the damage is not known until some months after the injury. Sometimes, when the swelling subsides, full or partial movement returns after a few months. These cases may be the ones that you are referring to where movement of the legs occurs after a few months.

      Movement can sometimes continue to improve over the next few years, especially with exercise targetted at weak muscles.

      Sometimes, when damage to the spinal cord is incomplete, exercise, gait training, physical therapists, personal trainers and other experts can help to slowly improve function over many years, as is happening to me. I also take a drug called fampridine to help improve movement.

      It is important to find health professionals who understand spinal cord trauma, and who are prepared to put time and effort into researching how best to deal with an individual’s case. Every body is unique.

      Regardless of how much movement is regained, my own experience suggests it is important to maximise mobility and flexibility, and to work with people who are committed. I have learned to think in the long term. Recovery has not been immediate, but even small changes have lead to a much better quality of life.

      Nobody can predict an outcome, but my philosophy is that you have nothing to lose and everything to gain by working towards a goal of maximum mobility. Exploit the knowledge and talents of every exercise and health professional.

      Good luck, and best wishes for your son.

  16. Hi, I just read your article. I appreciate being able to hear first hand from someone. Just a few days ago, my brother, age 33 feel from about 100 feet and landed on his butt. He fractured the L2,L3, crushed the L1, and severed his spinal cord. I’ve bed doing alot of reading to try to find out what our options are and what to expect. He’s able to shift his legs from right to left and somehow moved his toes once. Was today just a fluke thing since the cord is cut? We’ve only been able to speak to a doctor once and that was right after surgery. This happened in California, and we all live in Illinois. Getting frustrated with not knowing anything

    1. Hi, I’m sorry to hear about your brother. At L2, L3 you would expect movement of the legs and foot. If the cord is damaged at L1 you would expect less movement. (The higher the injury, the less movement you have).

      From my own experience, if your brother could move his toes it would seem that the spinal cord may not be completely severed. The extent of the injury may not be known for a few weeks or longer because often there is swelling round the cord and it can take a while for this to go. Sometimes the swelling puts pressure on the cord and when the swelling goes down there is some recovery of movement.

      It seems that it is very early days to know how much movement your brother may have, but being able to move his toes is very promising.(it is possible that the movement is spasm, but your brother would know this because spasm happens without trying to move – it is not a controlled movement.) When I started to be able to wriggle the big toe of my right foot, the doctor told me to move it up and down, up and down, up and down, up and down …. It’s hard work, but keep doing it.

      It is possible that your brother will be able to walk with aids – a brace on the ankle, and crutches. There are various types of equipment that assist walking.

      It is possible that he may continue to gain more movement, especially over the next few years. (Unless his cord is completely severed which is very difficult to know. Even an MRI scan cannot show with absolute certainty)

      It is likely that his doctors will be reluctant to give a prognosis or long term outcome because every spinal cord injury is different and there is little certainty, especially so soon after his injury.

      Even if your brother is able to walk itis possible that he will need to use a wheelchair for some of the time, at least initially.

      I am not sure how bladder and bowel are affected at this level, but even if his bladder seems ok it’s really important to make sure that it is emptying ok. This is something he should talk to a doctor about because its really important.

      The other thing that’s really important is to exercise as much as possible and to keep working the muscles that work, as well as trying to work the ones that don’t seem to work. Finding physical therapists that want to help get as much recovery as possible is important too.

      I hope some of this helps. You can email me if you have any other questions. I am not a health professional, but I have found health professionals who have supported my goal to walk again.

      Good luck Denise

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