Complete v Incomplete Spinal Cord Injuries

What's all the confusion about "complete" and "incomplete?" Complete usually means "total" or "whole," while incomplete usually means "unfinished," or "not yet perfect." Although there aren't many situations where we would like to hear ourselves described as "incomplete," spinal cord injury may be one of them. Indeed, when it comes to nerve injuries and muscle paralysis, most everyone thinks that a partial paralysis or an incomplete injury is better than a complete injury or total paralysis. Does this mean that an incomplete injury is a good injury? It depends on how you look at it.

In the world of spinal cord injuries, incomplete tells us a lot and very little at the same time. It tells us that the person does not have total paralysis or loss of sensation; it tells us that his or her spinal cord was not totally damaged or disrupted. But that's all it tells us. Incomplete injuries run the gamut:

They can be so mild that they cause almost no muscle weakness or visible signs that a spinal cord injury ever even happened.

They can be so severe that they leave the individual looking and feeling not very different from someone who has a complete injury - except, perhaps, for some areas of preserved sensation.

Typically, they fall somewhere in between.

The Facts:
There's almost always hope of recovering at least some function after a spinal cord injury. But is there more hope after an incomplete injury? Perhaps - at least early on. Here's what we know:

Spinal cord injuries that did not cause total paralysis have the best chances of additional recovery. In a large study of all new spinal cord injuries occurring in the state of Colorado USA, only one in seven of those who were completely paralysed immediately after injury got a significant amount of movement back. But, of those who still had some movement in their legs immediately after injury, three out of four got significantly better.

People whose spinal cord injuries did cause complete paralysis may still have a good chance of muscle recovery if they have sensation in the lower part of their body just after injury. About 2/3 of those with neck injuries who can feel the sharpness of a pin-stick in their legs eventually get enough muscle strength to be able to walk. Of those with neck injuries who can only feel light touch, about 1 in 8 may eventually walk.
 
The sooner that muscles start working again after a spinal cord injury , the better the chances are of additional recovery - especially for walking. However, when muscles come back much later - after the first several weeks - researchers have reported that they are more likely to be in the arms than in the legs.
 
How long do these better odds of recovery go on? How long should a person with an incomplete injury - or even one with a complete injury for that matter - continue to hope for recovery? There's no easy answer. Certainly, by two or three years after the injury, the chances of paralysed muscles starting to work again on their own are pretty small. What about one month, two months, or six months after the injury? It's a little harder to predict, but there are two rules of thumb:

As long as you're seeing some improvement and additional muscles recovering function, your chances of seeing more improvement are better.
The longer you go without seeing improvement, the lower the odds are of improvement just starting to happen on its own.

Dilemmas:
So, at the same time that an incomplete injury is a good thing, it does create some dilemmas:

How do you deal with the fact that no one can give you a really good prediction of what to expect a year or two into the future? As any spinal cord injury can be life-changing, you need to plan for the future. Should you go ahead and modify your house, or should you wait? Should you buy a van, or hang on to that four-door car with the manual gears a little longer?

How long should you let your life stay on hold while you watch to see what kind of recovery you'll get? Do you quit your job to focus on therapy for the next six months or year? Do you postpone a big trip, a graduation, a move - on the chance it might be easier later on - or do you go ahead and do it now?

Possible Guidelines:
There aren't really any easy answers. And, unfortunately, people with incomplete injuries may face other, more immediate challenges, too:

For some, the length of inpatient hospitalization may be shorter, while time may be spent in outpatient therapy. This is good - it gets you home faster. But, at the same time, it sometimes causes you to miss out on inpatient programs, classes, and even chances to interact with other people with spinal cord injuries and professionals whose experiences you might benefit from.
Compared with people with complete spinal cord injuries, there are - and probably always will be - fewer people with injuries just like yours who are going through the same things you are.
You may feel neglected or overlooked. Often rehab, and even many community programs, as well as building adaptations and specialized equipment, seem as if they're designed for the person with the complete injury. This can be a particular problem if, for example, your incomplete injury affects your mobility but doesn't require you to use a wheelchair all of the time; or, if your legs work pretty well but your arms are not too cooperative.
Even more concerning, benefit programs may be harder to qualify for. The doctor charges, hospital bills, and therapy sessions can be just as expensive as when your injury is a complete one, but because your condition may be changing, you may not qualify immediately for benefits like Social Security, Medicaid, or vocational rehabilitation. Why? Programs for people with disabilities have limited resources and tight purse strings, so they often prefer to spend their money on people who they think are the most likely to be permanently disabled. When there is an incomplete injury, they may want to take a wait and see approach. That waiting and seeing can go on for months - or even longer.

Perhaps Worst of All:
All these things are bad enough, but there's a double whammy: You may have days when you feel - there may even be days when it seems that others are actually telling you - that you have no right to feel sad, depressed, or frustrated. No matter how bad or overwhelming all of the things we just described may be, no one allows you to forget that "It could have been worse." It may be your own conscience that tells you, or it may be a well-meaning visitor: "Just look around you. See all the people who have worse problems than yours…"

This doesn't help a whole lot. It's like being caught between a rock and a hard place. When you're feeling low, you're reminded how much worse it could have been… When you're feeling up and ready to move on with your life, you're told to be patient and wait and see…. If someone thinks you're spending too long waiting and seeing, you're told to "get on with it." If it's any consolation, you'd be surprised at how much even people with complete injuries hear the same things and put up with the same feelings. It seems there's always someone who's willing to point out that "It could have been worse."

What Can You Do?
Know that you're allowed to feel the way you feel. You don't need to feel grateful that your life isn't even more overwhelming or more topsy-turvy than it already is. You don't need to feel guilty for thinking about - and missing - what's been lost.
At the same time, know - believe - that things will get better. Whether you get a lot of recovery or just a tiny bit more, it is going to get easier. Try to find a balance between "wait and see" and "get on with it." You don't want to try and conquer the world tomorrow, yet you can't leave your whole life on hold either. Check with others around you - your therapists, friends, family, etc - to get a feel for what they think is a good balance.
Realize that no matter how much recovery you have, your life will be different, in some way. There will be problems you'll want to take steps to avoid; there will be adjustments that will be required. With the right planning, different doesn't need to mean worse.
Remember: Most people with spinal cord injuries - whether complete or incomplete - do cope. In fact, most are satisfied with their lives. In research done several years ago, even people with very high quadriplegia who depended on mechanical ventilators were happy. More than 90% were glad to be alive; more than 85% said their quality of life was at least average - many said it was excellent! It's very likely that you will feel this way, too.

Further Down The Road
Having a spinal cord injury that is incomplete often means less paralysis, more sensation, and maybe an easier time managing your bowels and bladder. It can also mean more sexual function, and it often means that getting around, taking care of yourself, and doing things will be easier than if your injury had been a complete one. However, having an incomplete spinal cord injury is not a "walk in the park."

Four Kinds of Problems:
Research turned up four main areas where people with incomplete spinal cord injuries may have problems or frustrations:

The "wait and see" mode
Pain
Fatigue and weakness
Emotional issues

"Wait & See"
We described the emotional stress related to "wait and see" how much muscle recovery might happen in another brochure: Incomplete SCIs: the Early Days. You might want to read through that one again. However, there is also some medical "waiting and seeing" going on, too. For example, people with incomplete spinal cord injuries often leave the hospital with spinal fractures that are still healing and being followed by their doctors. In fact, in one study, 20% of the people we surveyed were discharged from the hospital before their spinal fracture was fully healed. Many were still wearing back or neck braces, or had been told by their doctors to limit their range of movement or avoid specific activities - like lifting, twisting, or stretching. What does this mean? Often, even though you may feel you are physically able to do an activity independently, you may still need short-term help. Examples could be dressing, getting up from the floor after a fall, climbing stairs, and driving.

Getting the help you need for these activities may take some creativity - especially if you don't have an insurance policy that will pay for extra help and care in the home. Friends, volunteers, church members, or college students are possible options.

Pain
Pain can sometimes be a problem for people who have incomplete injuries. It's kind of a double whammy: the good news is that having more sensation is always a good thing; the bad news is that having more sensation will also give you the ability to feel pain - and pain is rarely any fun.

In our study, 25% of the people with incomplete injuries complained of pain in their backs, necks, or in other joints. In another study, as many as 40% of people with incomplete injuries complained of pain. That was twice the amount of people with complete paraplegia who had pain. Chronic pain can be incredibly annoying - and sometimes disabling. However - and, perhaps fortunately - it's new or changing pains that you need to be particularly aware of. It's these kinds of pain, and not typically the ongoing, unchanging chronic pains, that usually tell you that something is amiss.

Strangely, not enough pain can be a problem too. Although the most frequent scenario is to have more feeling than movement, it is possible for the opposite to happen, too. It's possible for muscle function to return, but not sensation. It's also possible for the deep sensation to be damaged, without you being aware of it. When sensation within a joint is impaired and you cannot feel normal pain in that joint, it's referred to as a Charcot joint. If you have a Charcot joint - especially if the muscles around that joint are working pretty well - you need to be pretty careful. That's because without pain as a warning signal, it's possible to be doing transfers, exercising, or even be up and walking, and damaging a shoulder, hip, or knee joint without even knowing it. When should you worry? If you're able to use an arm or a leg pretty well, but know that it doesn't feel quite right, review this with your doctor. He or she may want to monitor you closely with x-rays, etc.

Fatigue & Weakness
People with incomplete injuries who are able to walk complain of fatigue significantly more often than those with incomplete injuries who are wheelchair users. In fact, half of all walkers complain of fatigue. It's also noteworthy that more than twice as many people with incomplete injuries - 19% - complained of neurological deterioration during the first year after their injury. Even more had the complaint in following years. They reported things like strength loss, changes in sensation, and decreasing bladder function. However, subtle changes are easier to notice when the injury is incomplete and there's remaining muscle function and sensation. And, it's easy to confuse fatigue, pain, or illness with actual changes in your spinal cord injury. The bottom line: if you think you see a change, don't ignore it. Make a list of specific changes and things you can't do that you once could, and share it with your doctors or therapists. Ask them to take baseline measurements of your strength or sensation so they can record your status at one point in time to compare it with a later point in time to see if there have been real changes.

And - regarding fatigue: take it seriously. New research is suggesting that fatigue is a major issue for people with all kinds of spinal cord injuries the longer they have been injured. It won't go away on its own, and it's only likely to get worse, unless you do something about it - a change in your schedule, routine, or even the equipment you use might help.

Emotional Issues:
We talked earlier about the dilemma of "waiting and seeing." Does this dilemma affect the psychosocial issues people with incomplete spinal cord injuries face when they leave the hospital? It's possible - you be the judge. Does it continue to affect you years and years after the injury? Probably not. Still, its useful to know about some of the emotional issues people with incomplete injuries report. Here's what we found in one study we did. Included in these numbers are people with all kinds of incomplete injuries; some had enough muscle function to walk; others did not:

More people with incomplete injuries (29%) complained of having money problems than both paras and quads (25%) during the first year. By five years, even more of them (35%) complained of financial problems. This could be because they have a harder time getting disability benefits, unemployment, Medicaid, etc.
More people with incomplete spinal cord injuries reported alcohol problems: at one year, 6%; at five years, 14%. Though these percentages are small, they're almost twice as high as among people with complete injuries.
10% reported feelings of depression.
Other problems were rarer, but are worth watching out for: increased alcohol use by the spouse, new behavioural problems appearing in the individual's children, and sexual difficulties.
Don't overlook the good news! In our research, we found that, despite the financial problems some people with incomplete injuries had, as a group, they had a better employment track record than their complete counterparts. They were also more involved in volunteer work and other productive activities. They reported their quality of life to be a bit higher than those with complete injuries and they had better scores on life satisfaction, well-being, and stress tests. And, they seemed to have done better than people with complete injuries when it came to getting back into their communities and resuming their old activities - things that their non-disabled peers were doing.

People with incomplete injuries also complained of fewer unmet needs. Fewer complained of not having a spouse, or children to raise, and only 3% - nine times less than the complete injuries - complained of having troubles making friends and socializing.

Getting Some Perspective
In some ways, having an incomplete injury may be easier than having a complete injury; but, in many ways, it's still pretty darn hard. However, regardless of what data and statistics say, in every way, an incomplete spinal cord injury is your own, unique, individual experience. Certainly, don't expect yourself to have problems just because other people have them - but at the same time, don't assume the risks don't apply to you. Keep these things in mind:

You need to have good - and regular - medical check-ups.
Don't assume your spinal cord injury is a thing of the past.
Expect that things will get harder if you have an illness, an operation, a major life stress - and as you get older. Plan ahead and have help and equipment lined up.
If you've been injured a number of years, be aware that there have been many changes in equipment and technology. There may be things available now to make your life easier that weren't available years ago.
Don't ever feel you can't ask for help.
Be in touch with your body. Don't obsess on minor changes and fluctuations, but don't ignore them either. Do you think you might be changing? List out specific and concrete examples and present them to doctors or therapists who are experienced in spinal cord injury treatment.
 

* text and content adapted from original @ craighospital.org