FREQUENTLY ASKED QUESTIONS


1. Q: What is paralysis?

A. Partial or complete loss of function, especially when involving the motion or sensation in a part of the body.


2. Q: What is spinal cord injury? Quadriplegia and paraplegia?

A: A lesion of the spinal cord that results in paralysis of certain areas of the body,
along with the corresponding loss of sensation. Paraplegia refers to paralysis from approximately the waist down and quadriplegia refers to paralysis from approximately the shoulders down. Most spinal cord injuries result in loss of sensation and function
below the level of injury, including loss of controlled function of the bladder and bowel.
See "Nomenclature of Spinal Vertebrae".


3. Q: What is meant by the terms "complete" and "incomplete"
spinal cord injury?

A: Dr. Wise Young explains it this way: "The clinical term ëincomplete'
when applied to spinal cord injury indicates that the patient has some sensory
or motor function below the lesion level. As defined recently in the International
and American Spinal Injury Association (ASIA) Neurological Classification of
Spinal Cord Injury, the term has been given an even more specific meaning,
indicating a person with preservation motor or sensory function in the
last sacral segment (S4-5). This definition gets around the problem often
encountered in the clinical setting of a patient who has an injury at a
given level, some preserved sensation or motor function or several
segments, and then no function below that level. By defining incomplete
as having some function at the lowest level of the spinal cord, the
definition becomes unambiguous. A more controversial term relates to the
word ëcomplete' when applied to spinal cord injury. By the ASIA
definition, a person that does not have preserved sacral sensory or motor
function should be ëcomplete'. Unfortunately, the term has connotations
of complete loss and a finality that is not desirable. Some patients with
complete loss of neurological function below the lesion level may still
recover several segments, especially when treated shortly after injury."


4. Q: How are spinal injuries caused?

A: Until the most recent figures were released by NSCIA in August, 1995, these were considered as the major causes of spinal cord injuries. See Answer to # 4 for all the most recent demographics. One of the most surprising findings is that acts of violence have now overtaken falls as the second most common source of spinal cord injury, as of the 1995 findings.

Motor vehicles 48%
Falls 21%
Sports 14% (66% of which are caused in diving accidents)
Violence 15%
Other 2%

4. Q: What are the demographics of spinal-cord-injured individuals?

A: Special thanks to Lyman Phillips of NSCIA for providing CPN with this up-to-date
comprehensive data:


SPINAL CORD INJURY STATISTICAL INFORMATION


Although there is more information available about people who have a spinal cord injury
than ever before, much of it is incomplete. Some of the statistical data is summarized
below.

We have very little information about disease-induced spinal cord injury, except brief
descriptions of the diseases. The following information relates to traumatic spinal cord
injury. It was compiled primarily by researchers at the University of Alabama using
data from the regional SCI Centers funded by NIDRR. For more information on spinal
cord injury statistics call --the National Spinal Cord Injury Statistical
Center, Birmingham, Alabama.


NUMBER OF NEW INJURIES PER YEAR


32 injuries per million population or

7800 injuries in the US each year

Most researchers feel that these numbers represent significant under-reporting. Injuries
not recorded include cases where the patient dies instantaneously or soon after the
injury, cases with little or no remaining neurological deficit, and people who have
neurologic problems secondary to trauma, but are not classified as SCI. Researchers
estimate that an additional 20 cases per million (4860 per year) die before reaching the
hospital.


TOTAL NUMBER OF PEOPLE WITH SCI


--82% male, 18% female
--Highest per capita rate of injury occurs between ages 16-30
--Average age at injury - 33.4
--Median age at injury - 26
--Mode (most frequent) age at injury 19
--Motor vehicle accidents are the leading cause of SCI (44%), followed by acts
of violence (24%),falls (22%) and sports (8%), other (2%)
--2/3 of sports injuries are from diving
--Falls overtake motor vehicles as leading cause after age 45
--Acts of violence and sports cause less injuries as age increases
--Acts of violence have overtaken falls as the second most common source of spinal cord injury

--Marital status at injury:

Single 53%
Married 31%
Divorced 9%
Other 7%

--5 years post-injury:

88% of single people with SCI were still single vs.
65% of the non-SCI population
81% of married people with SCI were still married vs.
89% of the non-SCI population

--Employment status among persons between 16 and 59 years of age at injury

Employed 58.8%
Unemployed 41.2%
(includes: students, retired, and homemakers)

--Employed 8 years post-injury:

Paraplegic 34.4%
Quadriplegic 24.3%

People who return to work in the first year post-injury usually return to the same job for the same
employer. People who return to work after the first year post-injury either worked for different employers
or were students who found work.


THE INJURY


Since 1988, 45% of all injuries have been complete, 55% incomplete. Complete injuries result in total loss of sensation and function below the injury level. Incomplete injuries result in partial loss. "Complete" does not necessarily mean the cord has been severed. Each of the above categories can occur in paraplegia and quadriplegia.

Except for the incomplete-Preserved motor (functional), no more than 0.9% fully recover, although all can improve from the initial diagnosis.

Overall, slightly more than 1/2 of all injuries result in quadriplegia. However, the proportion of quadriplegics increase markedly after age 45, comprising 2/3 of all injuries after age 60 and 87% of all injuries after age 75.

92% of all sports injuries result in quadriplegia.

Most people with neurologically complete lesions above C-3 die before receiving medical treatment. Those who survive are usually dependent on mechanical respirators to breathe.

50% of all cases have other injuries associated with the spinal cord injury.


MOST FREQUENT NEUROLOGICAL CATEGORY


Quadriplegia, incomplete 31.2%
Paraplegia, complete 28.2%
Paraplegia, incomplete 23.1%
Quadriplegia, complete 17.5%


HOSPITALIZATION


(Important: This section applies only to individuals who were admitted to one of the hospitals designated as "Model" SCI centers by the National Institute of Disability and Rehabilitation Research.)

Over 37% of all cases admitted to the Spinal Cord Injury System sponsored by the NIDRR arrive within 24 hours of injury. The mean time between injury and admission is 6 days.

Only 10-15% of all people with injuries are admitted to the NIDRR SCI system. The remainder go to CARF facilities or to general hospitals in their local community.

It is now known that the length of stay and hospital charges for acute care and initial rehabilitation are higher for cases where admission to the SCI system is delayed beyond 24 hours.

Average length of stay (1992):

Quadriplegics 95 days
Paraplegics 67 days
All 79 days

Average charges (1990 dollars)

Quadriplegics $118,900
Paraplegics $ 85,100
All $ 99,553

Source of payment acute care:

Private Insurance 53%
Medicaid 25%
Self-pay 1%
Vocational Rehab 14%
Worker's Comp 12%
Medicare 5%
Other 2%

Ongoing medical care: (Many people have more than one source of payment.)

Private Insurance 43%
Medicare 25%
Self-pay 2%
Medicaid 31%
Worker's Compensation 11%
Vocational Rehab 16%


AFTER THE HOSPITAL


Residence at discharge

Private Residence 92%
Nursing Home 4%
Other Hospital 2%
Group Home 2%

There is no apparent relationship between severity of injury and nursing home admission, indicating that admission is caused by other factors (i.e. family can't take care of person, medical complications, etc.) Nursing home admission is more common among elderly persons.

Each year 1/3 to 1/2 of all people with SCI are re-admitted to the hospital. There is no difference in the rate of re-admissions between persons with paraplegia and quadriplegia, but there is a difference between the rate for those with complete and incomplete injuries.


SURVIVAL


Overall, 85% of SCI patients who survive the first 24 hours are still alive 10 years later, compared with 98% of the non-SCI population given similar age and sex.


CAUSES OF DEATH


The most common cause of death is respiratory ailment, whereas, in the past, it was renal failure. An increasing number of people with SCI are dying of unrelated causes such as cancer or cardiovascular disease, similar to that of the general population. Mortality rates are significantly higher during the first
year after injury than during subsequent years.


NSCIA, 8/95


The Factsheet is provided as an information service to you and is not intended to be comprehensive. The data used in this Factsheet was compiled by the National Spinal Cord Injury Statistical Center at the University of Birmingham. Any information you may have to offer to further update this Factsheet would be greatly appreciated. The National Spinal Cord Injury Association Resource Center (NSCIRC) provides information and referral on any subject related to spinal cord injury. Contact the resource center at 1-800-


5. Q: How is sexuality affected by spinal cord injury?

A: Sexual function, as in all other human bodily systems, is controlled by the central nervous system. Thus, any injury to the central nervous system will affect sexual function. The question is to what extent function and sensation will be affected with injuries at various levels and degrees of severity. Also, in what ways do the symptoms manifest themselves in males v. females. As one can imagine, this is a vast and complex subject that cannot be adequately treated in just a few paragraphs. You may want to read Sam Maddox's book Spinal Network where he treats this subject among many others, quite adequately.

In general, the best way to determine your own level of function is to learn how your body and mind react in certain situations. Complete and open communication and exploration between partners is recommended. In addition, a current project being conducted by Dr. Todd Linsenmeyer is attempting to find ways to enhance the fertility of SCI males. He explains that there are two causes of this infertility -- poor semen quality and ejaculatory dysfunction. The problem with ejaculatory dysfunction has largely been solved with use of electroejaculation. However, poor semen quality, particularly sperm motility, continues as an unresolved problem. It is generally accepted that a significant number of SCI men have abnormalities of spermatogenesis as well. There have been no prospective clinical studies of spermatogenesis, sperm motility, or sperm function following SCI. Our preliminary data have shown that spermatogenesis may begin shortly after SCI in rats. Poor semen quality has also been noted 2-4 weeks after SCI in men. Neither clinical nor animal studies have identified mechanisms responsible for these impairments, but his study is not yet completed (1996).


6. Q: Where should spinal-cord-injured persons go for rehabilitation?

A: The National Spinal Cord Injury Association (NSCIA at )
maintains a current list of all accredited programs...over 50 in all. Some factors to
consider in choosing a facility:

1. Reputation/word of mouth.
2. Proximity to home, family, friends.
3. Availability of facilities needed/wanted for one's specific rehab objectives.
For example, FES, occupational therapy, attitudes of staff, etc.


7. Q: What happens within the body when the spinal cord is injured?

A: Synaptic connections are interrupted. A sequence of 3 stages rapidly ensues:
1. The impact of force that exceeds the backbone's protective design damages nerve
cells.
2. Acute: loss of normal blood flow, swelling of tissue, breakdown of cell structure,
and loss of myelin sheath.
a). The flow of ionic current is disrupted when the higher concentrated calcium
ions on the exterior of the nerve cells break through their respective cell
membranes to flood the interior of these neurons. In the process of regaining
a balance of pressures in the ionic concentrations, calcium sets off a series of
self-destructive cellular events. Phospholipase enzymes, that digest tissue, are
released from the broken cell membrane. This results in the release of free
radicals that satisfy the imbalance by attacking nearby "good" cells. This sets
off a process called lipid peroxidation. Since this oxygen breakdown of
essential cell lipids will lead to more swelling by water entering tissue from the
blood and cerebrospinal fluids, cell breakdown accelerates with the release
of toxic substances that affect blood flow. Glutamate, the main excitatory
transmitter, is an amino acid messenger in normal neuronal communication,
but in large doses glutamate expresses its toxicity by overloading neuronal
circuits.
b) Other neural substances are released by injury, such as serotonin,
catecholamines, and endorphins.
c) Some studies suggest that astrocytes emit a growth inhibiting effector
molecule that prevents regrowth of axons.


8. Q: What is the immediate axonal reaction to "transection" of the spinal cord?

A: The very first event after disruption of an axon (whether by spinal cord transection or contusion) is the instantaneous escape of axoplasm from both the proximal and distal ends of the axon. The axons will naturally become swollen, but axoplasmic transport attempts to prepare axons to regenerate. This regeneration is common in the PNS, but not in the CNS. .
Other factors influenced by the transection of axons are found in the myelin sheath, supporting glial cells, and in the microvasculature. The interaction of factors affecting axonal regeneration can be observed at the axonal tip.

The axoplasmic leakage creates an almost immediate gap in the axoplasmic column within the otherwise intact myelin sheath tube. Within a few hours of transection the axonal tips of large fibers are set back from the injury site leaving smaller fibers at the cut end.

The leakage of axoplasm stops within a few hours of transection as the axon tip is lined by axolemma within an hour, and layers of collapsed myelin form a septum in front of the axonal tip.

The process of "axonal autotomy" begins approximately one day after transection and continues for about a week. It is a process whereby the tips of axons degenerate by a means of terminal club rupture, and then retrograde as much as 1 cm from the point of original transection.

The terminal club rupture is significant. Among the axoplasmic contents that build up and escape, are lysosomes (which contain more than 50 enzymes, all hydrolytic and with acid pH optima). The escaping lysosomes could be activated and lead to autolysis of the surrounding spinal cord tissue resulting in the destruction of the heretofore smaller intact fibers passing near the ruptured terminal clubs.

After the one week period the final terminal club is formed at a distance of 1 to 2 mm or more from the site of transection and does not rupture again.

As there are antagonistic forces at work between the force of the axonal transport and the encasing myelin barrier, the only mechanism that could result in axonal regeneration seems to be the removal of the myelin encasement without rupture of the terminal club. This is precisely what occurs in the CNS of lower vertebrates that exhibit axonal elongation after transection.

The crucial difference in sheath structure is the presence of the neurilemmal basal lamina in the PNS and its absence in the CNS. In the PNS the basal lamina tube covers the myelin and the node, thus providing a continuous channel for the terminal club to pass through. It may be possible that the expanding force of the terminal club could be converted by the restraint of the basal lamina into a forward movement. Axonal regeneration could then begin.


9. Q: What is the structure of nerve cells?

A: Nerve cells have three basic structural aspects: a) the nerve cell body,
b) a set of delicate, multiple "receiving" antennae that are actually
extensions from the nerve cell body; these are termed dendrites, and
carry impulses towards the cell body, and c) a single long "sending" fiber
that can extend for one yard (3 feet) or more; this is termed the axon and
carries impulses away from the nerve cell body. The dendrites and axons are
called "nerve fibers and can be thought of as long delicate "tentacles"
emanating from the nerve cell; electrical impulses are conducted along the
"outer skin" of the tentacles; this "skin" is known scientifically as the
plasma membrane and is continuous from the dendrite, to the cell body, to the
axon. The plasma membrane is made of precisely arrayed molecules of lipids
(fats) and proteins.


10. Q: What is a nerve impulse?

A: An electrical current is carried along the plasma membrane
(outer skin) nerve, and it may "start" in one of three ways:
a) spontaneous "ignition" of the nerve cell body, b) removal
of a suppressor impulse, and c) reception of an electrical impluse
from other nerve cells.


11. Q: What are synapses?

A: These are the junctions between the "sending" fibers of
one nerve cell, to the "receiving" fibers of other nerve cells.
The axon (sending fiber) ends in multiple branches, each of
which has a button-like enlargement that nearly touches the
"receiving" fibers of the other nerve cell bodies. Nerve cells
"talk" to each other via synapses


12. Q: What is meant by Cytoskeleton?

A: This is a system of fibers and tubules inside the nerve cell
and its fibers. It is the microscopic, inner support of nerves.


13. Q: What does the spinal cord look like and what does it do?

A: The cord is like a coaxial cable, about one inch in diameter,
and is a continuation of the brain. It looks like firm, white
fat; nerves extend out from the cord to the muscles, skin and
bones, to control movement, receive sensations and regulate
bodily excretions and secretions.


14. Q: What happens when nerve fibers regrow?

A: The nerve cell body remains intact, and only the
"sending" or "receiving" fibers have to regrow as
longer extensions from the nerve cell body. The
peripheral nerves, outside the brain and spinal cord
can do this quite easily. But within the brain and spinal
cord there is some impediment to such regrowth.


15. Q: What are some of the demyelinating agents that could possibly be used to clear the path for axonal regeneration?

A: Possibilities: trypsin,


16. Q: How is glutamate toxicity neutralized?

A: By blocking the 3 kinds of receptors that glutamate acts upon. Glutamate-blocking
drugs, such as the phenothizines, have been used to successfully block the NMDA
(N-methyl-D-aspartate) receptor. In experimental models, this has resulted in a reduction
of functional loss and significantly improved motor recovery in brain and spinal cord
injury.


17. Q: At the acute stage, how can long-term consequences be reduced? Does
methylprednisolone (MP) really do much good? Is it dangerous or still
in the experimental stage?

A: The appropriate use of Methylprenisolone (MP) represents one of the most
significant advances in acute SCI treatment of our era. Although MP is indicated
for most acute spinal cord injuries, there appears to be little therapeutic benefit in
some cases. Probably the most obvious case where MP is not indicated is where the
spinal cord has actually been penetrated. Even massive steroid doses do not reduce
the zone of injury under such circumstances.

Dr. Wise Young's group at NYU, the Neurosurgery Laboratory, and The National
Acute Spinal Cord Injury Study II (NASCIS II) concluded in 1990 that high-dose methylprednisolone (MP) administered within 8 hours of injury improves neurologic recovery after acute SCI. It is currently the only FDA-approved SCI treatment that
provides significant neurological improvement.


18. Q: GM-1 (Sygen) has been written and talked about for a few years now. How
effective is it as an SCI treatment?

A: GM-1 ganglioside (Sygen) was written up by The Associated Press a year after an article appeared in the New England Journal of Medicine. It explained that Dr. Fred H. Geisler, M. D., Ph.D., a neurosurgeon at the Chicago Neurosurgical Center, headed a
team at the University of Maryland Shock Trauma Center in Baltimore that studied 34 people with paralyzing spinal cord injuries in a placebo-controlled, double-blind, randomized study.

The study results were reported in the June 27, 1991, New England Journal
of Medicine. Within three days of injury, 16 of Geisler's patients began daily
injections of GM-1 for 18 to 32 days, while the rest received placebo
injections. Patients given GM-1 had improved recovery of motor functions in
the arms, and later in the legs. About half of the improvement occurred at
the two-month mark, showing "dramatic" improvement. Most of the improvements happened within four months of patients' receiving GM-1 injections, but some
improvements continued for up to one year after GM-1 treatment.

Researchers theorize that GM-1 ganglioside (protein), naturally present in cell
membranes of the spinal cord and brain, helps protect against additional
nerve cell death after spinal cord injury and also stimulates nerve- fiber
growth and repair.

In August, 1996 the cover of a national magazine proclaimed that "Chris Reeve
Will walk Again...He took a miracle drug that cures paralysis", and referred to
a "Super report from top docs". A few details were given about how Dennis Byrd
(New York Jets) and others have recovered from paralysis by taking Sygen treatments within the first 50 days of their injuries. As for the top docs, the only docs mentioned by name in the article are Dr. Fred Geisler of the University of Maryland, Dr. John Schlegel
of the University of Utah, and Dr. Judith Walker of the Walker Institute in L.A. Reference
is made to Dr. Geisler as having said "In a small pilot study. Seven of the 16 people given Sygen improved from near total paralysis to being able to walk after one year." Sygen apparently works by improving the ability of nerves to remain alive after injury and makes surviving nerves better able to function, but has not yet (March, 1996) been approved
by the FDA.


19. Q: Can paralyzed people drive a car with automatic transmission? What
about using a computer?

A: Each situation is very unique, but generally it is possible that with practice,
at C6, an individual should be able to drive a car with hand controls and
manually operate a computer. However, for those with high cervical injuries,
voice-recognition software can be very useful.


20. Q: Does a spinal cord injured individual usually get some "return" after
a period of weeks, months, or years?

A: First of all, you are probably tired of hearing that each spinal injury is unique
and quite different from all others. But there are some generalities that help
describe the majority of spinal cord injuries. Most immediately sustain what is referred to as "spinal shock". The most obvious symptom is paralysis due to swelling of the spinal cord. This paralysis can improve as the swelling of the cord subsides, which can begin 3 weeks or more after the initial injury. But then, eventually the improvement most people experience is that their "level" descends at least one level and sometimes two levels below their injury site within a year, especially if they have received methylprednisolone shortly after injury.


21. Q: What about the actual existence of scar tissue in the human spinal cord?
Many have declared that the reason axons don't regenerate is that the
scar formation at the lesion site prevents them from growing.

A: There is some controversy now as to whether the scar even exists in the injured
spinal cord. Some recent autopsy studies suggest that there is no scar in most
cases, and only modest scarring in others.


22. Q: So when are we going to see the cure for paralysis?

A: I don't know. We might each see it at different times and in different ways. I
have heard that some paralyzed individuals will consider themselves cured if
they regain bowel and bladder control. Some quads may consider a cure to
mean that they can live independently, living the lifestyle of their choice. Who
knows, maybe one of the reasons we haven't seen "the cure" as yet, is that we
haven't really defined it. What is the cure to you? Probably most of us want to experience a return to the level of function and sensation that we had prior to the injury.

Whatever you perceive the cure to be, consider for a moment, the possibility
that the elements of the cure for paralysis have already been hypothesised in
more detail and clarity than is generally understood. Consider the progress
in our time of some of the most brilliant minds in history. Some of you could
undoubtedly point out areas that merit serious study and experimentation. I'm
going to leave you with just one. Please take the time to shoot it full of holes
and provide us with another target.

This concept comes from Dr. Robert Hecht-Nielsen, as found in the book,
"Surgery of the Spinal Cord" by Drs. Robert Holtzman and Bennet Stein.
"Let's say, for example, there is a traumatic injury to a spinal cord. What
I am suggesting here is that perhaps under certain circumstances the patient's
own tracts could be the source of cells that could assist with the regeneration process.

Let's go on to the next idea. The next step would be to operate and
remove the damaged area...why not go in and simply remove all of that
material by making extremely careful cuts to establish a prepared surface
in a known condition.

Now, immediately, instead of having a delay of hours between the
trauma and the time any attention is available, after these cuts are made
one could insert a microchannel plate in less than a minute, so that many
of the results of trauma that are processes that take minutes or hours to
evolve would never have a chance to evolve. The idea of this is that you
would use something like a cyanoacrylic cement and the microchannel
plate would be literally cemented on, on a small-scale basis, to the tissue to
create a completely closed surface. (There is a technology in electronics for
building plates, or actually cylinders, of any size, with holes in those cylin-
ders of sizes ranging from one micron up to hundreds of microns if you
want, virtually any size holes you want, and these can be made relatively
inexpensively and can be cut and machined.)

Then you finish the repair, immobilizing it and so forth, and of course
the idea is that the insides of these tubes have been cultured with Schwann
cells, but perhaps astrocytes are more useful so that the physical and chem-
ical medium that would promote axon growth is there.

The main concomitant of the use of this is that any gray matter connec-
tions within this region are eliminated forever. There is no hope of restor-
ing those, but at least there is some possibility of having fibers transit the
region."

"My thought was having astrocytes or Schwann cells cultured in this
microchannel plate before it is inserted. You have a quarter of a million
holes all larger than Betz cell axons that could be coated. The microchannel
plate could then be precision cut and "glued" in place. I think that over the
long haul there promises to be a lot of useful interaction between this subject and medicine ..."


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