The Impact of Scoliosis - CLEAR Institute

IMPACT, def.
“The power of making a strong,
immediate impression.”
American Heritage Dictionary

Artist: JoAnn Goldin
Bio: Artist and Glenview,
Illinois resident JoAnn
Goldin has experienced
the progressive effects of
scoliosis since age 12. She
has worn a corrective
back brace and undergone
double spinal fusion
surgery. Although her life
as an artist began before
her diagnosis, living with
scoliosis developed her
interest in exploring the
science of the body in
connection with her
artwork; conversely,
creating art focuses her
attention away from
herself and expands her
imagination.
Artwork: Untitled,
photograph, 30x40"
Inspiration: In this work,
tension is apparent in
the fragile stacking of
soup bones and dough
as the sculptured
column continues to
collapse, representing
the fragile state of the
artist's spine and the
limitations of the
technological
advancements available
at the time of her spinal
fusion. Goldin shares,
"although I am strong at
this time, the evidence
of continuous spinal
movement is apparent
as I look in the mirror."

www.lauraferguson.net
I have scoliosis, a deformity of the
spine. My body’s asymmetry
creates the need for a subtle
effort of balancing, in my physical
relationship to gravity and space,
as well as in my psychic sense of
centeredness and wholeness. The
conscious awareness of walking,
moving, breathing - bodily
processes that usually unfold by
themselves - has made me
attuned to my bones and muscles,
nerves and senses, like a dancer.
Drawing my body, I focus on this
heightened awareness and
transform it into visual imagery.
The Visible Skeleton Series
project began almost twenty
years ago, when I started to
experience physical disability
related to my scoliosis, and felt
the need to understand what was
happening to my body. I had
undergone spinal fusion surgery
at age thirteen, and had been fine
for many years afterward.

The Visible Skeleton Series, by Laura Ferguson
3-D scan image of Ferguson’s spine, with
corresponding paintings

The word most often used to describe Laura Ferguson’s work is
“beautiful.” Yet, as medical ethicist/historian Alice Dreger has
written, “Ferguson’s self-portraits are exquisitely subversive.”
The body she portrays is softly voluptuous in the style of Titian
or Degas, yet deformed by scoliosis: a flawed but perhaps more
interesting kind of beauty.

• “Creating images of my body that
are anatomically accurate, but
also personal, has felt
empowering, as if I were regaining
a sense of ownership of my own
body that had somehow been lost
when my experience was
‘medicalized.’ The more I
understood and internalized the
configurations of my unusual
body, the more graceful and
comfortable I felt in my skin and
the more manageable my pain
and disability have become.”
-Laura Ferguson

Artwork: Dessin X, Sanguine chalk on sketch
paper, 15 3/8 x 11 3/8 in, by Annie Cotrel.
“The real beauty of a human being does not necessarily
reside in the symmetry of the body. It is most often found
elsewhere, way beyond..."
-Annie Cotrel

Excerpts obtained from messages posted on the National
Scoliosis Foundation forum (www.scoliosis.org)

Quality of life in women with idiopathic scoliosis Spine
2002 Feb 15;27 (4) :E87-91 Freidel, Petermann, Reichel,
Steiner, Warschburger, Weiss
Askelepios Katharina-Schroth-Klinik Bad Sobernheim,
Germany
“Juvenile patients with IS were unhappier
with their lives. They reported more
physical complaints, had lower self esteem
and higher depression…”
“Adult patients reported more
psychological and physical impairment.”

What is life with scoliosis like?
• I have ALWAYS had pain from scoliosis. I was 12 years old
and would cry to my parents that my back hurt. I do not
know what my curves were then but when I had my surgery
in 1981 it was in the 60's, so it certainly was less than that.
• I'm guessing since it continued to get worse, it couldn't have
been that high at 12, but I could be wrong. I ALWAYS HAD
PAIN. It seemed like it was constant. I would lay on the floor
when I got home from school to get some relief. The only
thing the doctor did was send me to physical therapy, which
did nothing.

What is life with scoliosis like?
• Hi, I'm 17 and new here. I have a slight curve on my back but it usually
doesn't bother me. But I just got my very first summer job a couple days
ago and on my first day I worked five hours and had to stand up for the
entire time. I don't know if anyone else gets back pains from standing
too long but I get terrible pains and it was extremely hard to get
through the day with the same energy and enthusiasm as I should on my
job. I don't think I can keep up with the pain the entire summer.
•
What do I do? Should I tell my boss? I'm worried he might fire me or
look down on me because employees are not supposed to be sitting
down at all during their shifts. I thought about taking pain killers before
work but that can't be healthy to do so frequently, can it? I don't know
what to do and I'm scared. Please give me advice, has anyone had this
problem with a job? Is there a way to relieve the pain?

What is life with scoliosis like?
• Hi, I’m 16 and I can totally relate to you with the pain that you have while
standing. Although I've had surgery on my back for scoliosis. The last few
summers I was busy de-tasseling and that’s a job that you are constantly
standing up and walking. It got very painful and I couldn't wait untill we had a
break so I could sit down. The longer your body has to adjust to the standing up,
the better it will get because right now you are probably using muscles in your
back that aren't used to being used for that long of an amount of time. It
unfortunately will probably always ache, but it may get better. I just had my
third surgery for scoliosis about 4 weeks ago and I am finding that I
can't stand for more than 15 minutes due to not being able to use those
muscles. I agree with the people who have you posts, i've never had shoe insoles
but i've seen on tv that your whole allignment of your body starts with you feet
and that could also be causing pain. You may also want to see a specialist to find
out what exercises you should do to strengthen those back muscles. I tend to
have a lot of lower back pains and my bone specialist went over with me a few
exercises I could do to just strengthen those muscles and try to help the pain go
away.
Stay strong, and good luck with the job!!

Perceptions of body image, happiness and satisfaction in adolescents
wearing a Boston brace for scoliotic equipment. J Adv Nurs 2001
Sep;35(5):683-90
“Girls with scoliosis had a
statistically significant difference in
perception of happiness and
satisfaction.”
!“Cohabitation with the mother
seemed to be negatively correlated
with body image, happiness and
satisfaction perceptions.”

• Being the mother of a child with scoliosis has got to be a very great challenge,
especially if you don't have it yourself. As I had it myself, I know that the most
important thing I wanted as a child was honesty. BE as honest as possible with her,
giving the information at a level that she can understand and needs at this time.
Probably right now it sounds like you could just tell her that she has scoliosis, which is
a condition where your spine curves more than it should as she grows, and that it
needs to be treated, and she may need to wear a brace or have surgery when she gets
older, depending on how she grows and what the doctors recommend.
I don't think that the truth will scare her. Your attitude will make a big difference in
whether she feels like a victim or not. You should be very matter of fact about it, that
it is a medical condition, and lots of people have medical conditions, and we just deal
with it as it comes to us and don't feel sorry for ourselves. My own mother did not
do this well--she would say "oh, you poor thing, and I feel sorry for you" in my
presence when I got my brace which she should not have done as this made me
feel very victimized and self-conscious throughout my high school years.
Another thing that would have helped me as a girl would have been to have known
other people with scoliosis. If you know someone else who has scoliosis or has been
treated for scoliosis, it would be good for her to be able to meet and talk to them.
Otherwise there are some good websites for kids with scoliosis where they can talk to
each other (on here and other sites others have mentioned).
I know that you will do a good job as you are concerned enough to write us and ask
how to do so. Good luck to you and your daughter and let us know about her
progress.

Anxiety and postoperative pain in children who undergo
major orthopedic surgery. Appl Nurs Res 2001
Aug;14(3):119-24
“Parents emotional states are
important indicators of children’s
emotional states and,
subsequently, their pain
experience.”

What is life with scoliosis like?
• I am 27 and was told at age 18 that my curves would not progress. They
were 18/18. When I got checked again at age 22 they were 26/25 and
now at 27 they are 32/30. Now, I want to do everything I can to NOT
have surgery. I am trying alternative therapies first. However, I know
that my scoliosis , if not corrected now, will continue to worsen as I age.
I spoke with my orthopedist about this. Ever the CARING doctor (snort)
he brushed me off. He told me "you look fine" and I said "It is not just
about my appearance, I am in pain and I am worried about the future."
He said I should never have surgery because I faced a substantial risk of
"DYING on the table." He phrased that like it would absolutely happen
to me. Now I am of otherwise good health. No heart or lung problems,
not overweight, no diabetes or anything like that. I don't know why he
felt the need to scare the heck out of me by saying I would possibly DIE
from the surgery.

Perceptions of body image, happiness and satisfaction in
adolescents wearing a Boston brace for scoliotic equipment.
J Adv Nurs 2001 Sep;35(5):683-90 – (CONTINUED)
“Only 5% of those with scoliosis
declared that they had
opportunities to discuss their
feelings with health professionals,
while 90% of them declared that
they wanted to have more
opportunities to do this.”

What is life with scoliosis like?
• I'm new to the forum, although I've been reading each and every
post for the last several months. I'm 41 and I'm contemplating
surgery. I'm scared out of my mind, but I'm also scared about
doing nothing. My thoracic curve is progressing - now about 70
degrees. I'm having lower back pain every day and many days of
pain in upper back as well. You brave souls out there are an
inspiration to me. I just don't want to be worse off than I am
now. I know this is a common scenario. My pain now is not
unbearable, but I'm afraid if I wait too long, I won't be a good
candidate for surgery, and I will not have as good of a
correction. Any thoughts, anyone? I appreciate any words of
wisdom!

What is life with scoliosis like?
• [QUOTE=Suzy] “I wonder what is it that
scares you out of your mind in regards to this
surgery.”
Duh??? How ‘bout death, paralysis, pain,
massive blood loss, nerve damage, chronic
pain, disability, repeated surgeries, and more,
all of which have been reported here.

Long-term results of quality of life in patients with idiopathic scoliosis
after Harrington instrumentation and their relevance for expert
evidence
Gotze C, Slomka A, Gotze HG, Potzl W, Liljenqvist U, Steinbeck J.
Z Orthop Ihre Grenzgeb 2002 Sep-Oct;140(5):492-8
Klinik und Poliklinik fur Allgemeine Orthopadie des Universitatsklinikums Munster, Germany.
chrgoetze@uni-muenster.de
AIM: The expert evidence of operated patients with idiopathic scoliosis is
determined by functional and pulmonary restriction. The degree of deformity and
the extent of fusion is crucial for grading disability. In a retrospective study on
the quality of life (SF-36) and low back pain (Roland-Morris Score) of 82 patients
(22 - 40 years) with idiopathic scoliosis treated with Harrington
instrumentation the grading was registered. METHOD: An average of 16.7
years after the surgery, these data were correlated with the type and size of
curve and to the extension of fusion. RESULTS: A significant correlation
between the grading disability and the extent of fusion (P = 0.53) or
the size of curve (p = 0.4) could not be proven. CONCLUSION: Despite
good long-term outcomes, 40 % of operated treated patients with
idiopathic scoliosis were legally defined as severely handicapped
persons.

Scoliosis
!It is currently impossible to state that
bracing effectively alters the natural history
of scoliosis in immature patients who are at
high risk for progression.
!60% felt that bracing had handicapped
their life and 14% considered that it had
left a psychological scar.

What is life with scoliosis like?
• I'll tell you what wasn't easy...wearing that awful
awful shell of a brace...to work...in business
clothes...in august..in HOUSTON. UGH! Talk about
sweaty! and the looks... Nobody could keep eye
contact! Everyone's eyes would drift to my brace.
I was so so so happy to get to stop wearing it. At
home was one thing...at work was completely
different!

June 29, 1982

J Bone Joint Surg Am. 1995 Jun;77(6):823-7.
Prediction of progression of the curve in girls who have adolescent idiopathic scoliosis of moderate
severity. Logistic regression analysis based on data from The Brace Study of the Scoliosis Research
Society.
Peterson LE, Nachemson AL.
Department of Orthopaedics, Goteborg University, Sweden.
In a study conducted by the Scoliosis Research Society, 159 girls with a mean age of thirteen years (range,
ten to fifteen years) who had adolescent idiopathic scoliosis were followed prospectively until skeletal
maturity or until the curve had increased 6 degrees or more. All patients had had an initial curve of 25 to 35
degrees and an apical level between the eighth thoracic and first lumbar vertebrae, inclusive. Of the 159
patients, 120 were observed without treatment and thirty-nine were managed with lateral electrical
surface stimulation. The curve progressed at least 6 degrees in eighty patients. There was no apparent
difference in the outcome between the patients who were managed with observation only and those
who were given electrical stimulation. Logistic regression analysis was performed to determine which of
eleven factors were predictive of progression of the scoliotic curve. A Risser sign of 0 or 1, an apical level
cephalad to the twelfth thoracic vertebra, and an imbalance of ten millimeters or less were found to be
independently prognostic of progression of more than 6 degrees. A prognostic model that included these
three factors and chronological age allowed correct classification of the curve as either progressive or nonprogressive
in 81 per cent of these patients who had a thoracic or thoracolumbar adolescent idiopathic
scoliosis. The positive predictive value was 82 per cent, the negative predictive value was 80 per cent, and
the sensitivity and specificity were each 81 per cent.

What is life with scoliosis like?
• The ScoliTron was a small machine that, for me, connected to 4
electrical pads (electrodes) that i had to adhere to my back (2 upper, 2
lower) with a gel and then taped secured. The device sent electrical
shocks to my back and was supposed to stimulate my muscles and "slow
down" the progression of my curves and strengthen my back. Can you
imagine zapping yourself with a tazer gun? I had it on 8 hours every
night. My back was marked with a permanent marker for exact
placement because if the electrode was off a bit - the shock was
unbearable. I was able to control the level of shock - i think the dial
went from 1 - 10. The highest i ever got was a 7, i think. I used it only
for 3 months - until i ran out of the gel, tape and electrodes. To order
more gel, tape, and electrodes it would cost my parents everything they
made. It wasn't covered under their insurance. I made the choice to stop
all treatment.
According to further research - I must have been one of the
"experiments" back in the 80's...it was a failure overall and is no longer
being used for treatment.

Prospective Evaluation of Trunk Range of
Motion in AIS Undergoing Spinal Fusion
Spine 2002 Jun 15;27 (12) :1346-54
Engsberg et al, Wash U, St. Louis, MO
“Whereas range of motion was reduced in the
fused regions of the spine, it was also
reduced in unfused regions. The lack of
compensatory increase at unfused regions
contradicts current theory.”

What is life with scoliosis like?
• I am three and a half years post-op and I
guess b/c of where my fusion is, I still find it
difficult to shave parts of my legs in the
shower, especially the left side of my left leg. I
cannot twist around. I have a little foot rest in
the shower which helps. I also have trouble
with my toenails, so my husband clips them.

What is life with scoliosis like?
• I am 24, my surgery was seven years ago next month. Prior to
having surgery I was a really active teenager. I was in
competitive dance 4 times a week, took tae kwon do, and did
high jump. After surgery obviously I stopped a lot of these
activities to allow for proper recuperation and healing. Seven
years later, I still don't do much physical activity. I've been
blessed by a fast metabolism and good genes, so I'm still pretty
slender, but I'm just frustrated at the lack of options there are
for me as far as physical activity. I have a fair amount of chronic
pain, including arthritis and muscular problems as a result of my
scoliosis. I have no flexibility in my upper body, I can just bend at
the waist.

Chiropractors- harmful or helpful?
• After seeing a specialist after not seeing any doctors for the last 2
years he recommended both physical therapy and for me to see a
chiropractor. The doctor has great credentials and says a lot of his
patients like the chiropractor. The card he gave me for this
chiropractor is not associated with my specialist or the
hospital/facility so I don't think he's trying to make any more
money off me indirectly but I'm still not sure what to think.
When I first found out I had scoliosis I saw a chiropractor and it
hurt more than it helped so I stopped going. I don't want to think
all chiropractors are bad- maybe I just saw a bad one or something.
• Anyone have success or have their curve get worse from the
chiropractor?

Chiropractors- harmful or helpful?
• My chiro didn't do much. I have
scheuermann's kyphosis and he told me he
could correct the curve by up to 30-40%!
(Ha! - I was very naive at the time and
didn't know anything about the condition
so I believed him). After a year of
treatment - I have no decrease in the
physical deformity nor have there been any
decreases in back pain....just a hole in my
wallet. Be careful with chiro's and what
they promise.

Chiropractors- harmful or helpful?
• I wasn't helped...
Chiros might be good for pain, but they have no business
treating scoliosis itself. Pain secondary to scoliosis yes,
scoliosis, no.
Why did your ortho recommend you goto a chiropractor?
are you in pain?
I'm going to put it this way, if bracing sometimes cannot stop
progression of curves in children, what good will adjustments
do to adults? At least brace holds the spine in a correct
position for majority of the day, not just a few minutes as
adjustments will.

“For most patients,
however, chiropractic care
will be most beneficial in
dealing with symptoms of
scoliosis rather than
having an effect on the
degree of curvature.”
(“Take Charge of Your
Health: Dealing With
Scoliosis,” 1997 Palmer
Chiropractic University
Foundation)

This is my question to you . . . .
As Chiropractors…
As Doctors of the Spine…
What do we owe the scoliotic spine?

What do we owe the scoliotic spine?
• At the very least, we should understand
it, and be able to communicate
effectively with our patients about how it
can affect their health.
• We should also be familiar with the
negative research regarding braces &
surgery, as many sources will not share
this with the patient.

What do we owe the scoliotic spine?
• If chiropractic can take the lead in
demonstrating permanent, non-surgical
corrections to scoliosis, it will change
how we are viewed by the public, and by
our colleagues in the healthcare industry.

What do we owe the scoliotic spine?
• If we fail to act, ten years from
now, it could be a PT, and not a
chiropractor, who reveals to the
world the first reliable and
effective method of treating
scoliosis without bracing &
surgery.

What can YOU do?
• Ask your fellow students what
they know about scoliosis, and
educate them about its
importance.
• 5,000 years is long enough. It’s
time to offer real hope to people
living with scoliosis.
• Lead by example…

Here’s to the crazy ones, the misfits, the rebels, the
troublemakers, the round pegs in the square holes, the
ones who see things differently.
They’re not fond of rules and they have no respect for
status quo.
You can praise them, disbelieve them, glorify them or vilify
them. About the only thing you can’t do is ignore them
because, they change things . . . Because the people who
are crazy enough to think they can change the world, are
the ones who do!