Spasticity
Spasticity
Thirty and forty years ago, no one “in the know” believed that
aging with a spinal cord injury would be something we’d care about.
Back then, no one believed any of the “survivors” would survive
long enough for it to matter Now that assumption has been disproved
and the tune has changed. We're identifying and learning more
about the issues and concerns facing survivors–problems like fatigue,
upper extremity pain, urinary system problems, caregiver issues.
But spasticity doesn’t seem to have a place on that list. There
hasn't been much research into spasticity and aging, and what
SCI survivors tell us varies. Some say their spasticity has gotten
worse over time, some say it has lessened, and most don’t say
much of anything.
It seems that as people age with spinal cord injury, they focus
less on their spasticity. When none of the treatments that are
acceptable to them work, many begin to think that spasticity is
like the weather: You can complain all you want, but there ain’t
a whole lot you can do about it. So, while spasticity doesn’t
necessarily stop being a problem, it’s not mentioned when survivors
visit their physicians, it’s not documented if it is mentioned.
As a result, researchers don’t have any real information to sink
their teeth into. Instead we rely on clinicians' observations
and some good sound logic and intuition based on what we know
about spinal cord physiology.
What Do We Know?
At least in theory, there’s reason to suspect that just getting
older may lead to an overall decrease in spasticity. Nerve conduction slows down over time, nerve cells
in the spinal cord may degenerate, muscle mass and fiber size
may decrease, and blood circulation within the cord itself can
diminish. All of these should lessen spasticity.
Even more important, many people, over time, learn to deal more
effectively, or become more “comfortable,” with their spasticity.
As they get stronger, they learn to overpower their spasms, or
they learn what triggers their spasms and they avoid those things.
Some people even "use their spasticity" to empty their bladders,
to transfer, to dress, even to stand and walk. Others say it keeps
their muscles toned and improves circulation. Some suspect it
helps keep bones stronger and better mineralized. True or not,
spasticity may not be entirely bad.
Warning Signs:
Changing spasticity regardless of your age is often a symptom
as much as a problem. Sensations that you may not even be able
to perceive, but which your nervous system senses when something
is wrong, make spasticity increase.
Within the nervous system itself, perhaps the most serious complication
is a cyst or cavity in the spinal cord (sometimes called post-traumatic
syringomyelia). Increased spasticity is a common symptom of this
complication. However, decreasing or disappearing spasticity can also sometimes be a sign of a
cyst. Other diseases that may develop in the spinal cord tumors,
Guillain-Barre syndrome, transverse myelitis, a spinal cord stroke
also may cause spasticity to change.
Other problems outside your nervous system also can make spasticity increase. Urinary
tract infections, an over-full bladder, or a skin sore are just
a few examples.
Finally, YOU may change in ways that make spasticity become more of a problem, even though the spasticity itself doesn't get any worse. Things
like shoulder joint pain, fatigue, or general weakness may make
it harder to deal with what once was a reasonable amount of spasticity.
The result is the same as if the spasticity actually had increased.
The bottom line: don't ignore a significant change in your spasticity.
Two Perceptions:
So how much spasticity is too much? Unless you're one of those
people who "walks on his spasticity," uncontrollable spasms can
make life pretty miserable.
Ask John, who has an incomplete C6 spinal cord injury. He thought
long and hard about function and quality of life issues and finally
got to the point where no spasticity treatment would have been
too drastic. After too many years of incredible spasms and mega-doses
of anti-spasmodics, he was ready to take a look at dramatic, nerve-destroying
surgical procedures, even if it meant potentially sacrificing
sensation and sexual function that he had below his injury site.
“Life was nearly impossible,” he says. “I feared staying in bed;
my legs would launch me out of it.” His hip was dislocating because
of the spasticity and he was taking so many anti-spasmodics that
his memory was failing. He tried rhizotomies with only short-term
success. Now, he's waiting to have a pump implanted.
Phil has pretty bad spasticity too; he blames it, at least in
part, for his worsening scoliosis. Though he’s independent in
his wheelchair, he describes his spasticity as “very interfering.”
Still, unlike John, he thinks most any intervention is too drastic.
In the more than 20 years since he broke his neck, he has tried
various oral medications; some worked a while, some didn’t, and
overall he didn’t like the side effects He won't consider a rhizotomy
because of its permanence. Besides, he's one of those guys who
says his spasticity helps him with his transfers. He has given
a bit of thought to the baclofen pump, but he’s still very hesitant,
taking a “wait and see” approach.
Two different survivors; two different approaches to dealing with
their spasticity. Both seem to have ended up at least thinking
about the baclofen pump, but that’s probably
coincidental. The pump is generally effective, but countless people
have had excellent results with rhizotomies too. Regardless, the
purpose here is NOT to promote one type of spasticity management
over another or to tell you WHAT you should do about spasticity.
Instead, we'd like to help you learn to recognize WHEN it’s time
to do something.
20 Questions:
These are some of the questions that you might want to ask yourself:
Is spasticity limiting your function? Are there things that the spasticity keeps you from
doing? Is the job of your attendants or helpers made harder because
of spasticity? Are you using more personal assistance to keep
you positioned in your chair, to pick you up when a spasm throws
you on the floor? Are there other safety risks losing control
while driving your power wheel chair, car or van?
Is the treatment you're currently using as bad as the problem
itself? Are anti-spasmodic drugs affecting your memory, concentration,
and energy level? Are your sleeping and waking cycles out of kilter?
Has the amount of money you spend on medications, on attendant
care, on treating related skin problems gotten out of control?
u to cope with? Does shoulder pain make it harder for you to fight them? Are
they frustrating your new personal assistant also? Are they becoming
more than your aging caregiver can handle? Can you no longer stay
alone because of your spasms? Does someone always have to be
around to reposition you in your chair? Have the oral medications
stopped working or do other medications make them ineffective?
Parting Thoughts:
Think about it. Having a satisfying life is what it’s all supposed
to be about. Only you know what it takes to give you the quality
of life you want. If you decide it’s time for a change, educate
yourself about the pros and cons of each option. Then, find a
health care provider who understands both spinal cord injury and
spasticity and who will look with you at the big picture.
You may be getting older and your spasticity may be keeping you
company all the way. But if you're knowledgeable about your alternatives
and their implications, that long term companion of yours need
not be such bad company.
This is one of more than 20 educational brochures developed by
Craig Hospital while it was a federally-funded Rehabilitation
Research & Training Center on Aging with Spinal Cord Injury. The
opinions expressed here are not necessarily those of the funding
agency, the National Institute on Disability and Rehabilitation
Research of the US Department of Education.
For a hard copy of a METS brochure, click on your selection above
and hit the "print" button on your browser. If you'd like to ask for one directly from Craig Hospital, you can contact us by telephone at 303-789-8202, or you can e-mail us at HealthResources@craighospital.org.
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