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The
Cauda Equina Syndrome Support Group is a grass-roots
organization dedicated to providing information, support
and increasing awareness of Cauda Equina Syndrome to
individuals with this condition, their friends, family,
the medical community, and the public at large.
We are
not doctors, but we live with CES every day. While
unusual, Cauda Equina Syndrome is more common than many
in the medical community would like us to believe. Since
CES is often under-recognized and/or under-treated, we
have chosen to educate ourselves as fully as possible so
that we may be active participants in our medical future.
In
researching CES on the Internet, the paucity of available
resources led us, first, to create our support group, and
second, to share our collective knowledge and
understanding about this often devastating condition
through this Web site. We do this in the following
ways:
INFORMATION: Via
the Cauda Equina Syndrome Resource Center we aim
to provide the public with links to information
about the condition, its causes, its prognosis,
its treatment, and links to other organizations
which would be of value to those seeking
information about this little known and
misunderstood condition. Through the generous
spirit of our support group members, we will also
share individual stories about how we have
acquired and learned to live with this condition
in the hope that our personal stories will touch
others looking for information about how to live
with Cauda Equina Syndrome.
SUPPORT: In
a private e-mail-group forum, the Cauda Equina
Syndrome Support Group (CESSG) provides an
environment of understanding, laughter, sympathy,
and friendship for those dealing with CES. In
this safe environment, members share their
information, ideas, resources, and private
feelings about how CES affects their lives. Our
goal is that no one with CES ever feel isolated,
hopeless, embarrassed or alone again. We
welcome new members to our group. If you
are interested in joining our group you can reach
us at cessgboard@yahoo.com
INCREASED
AWARENESS: "One In A
Million”- is one of our humorous mottos with
a very serious message. Though doctors
continually tell us that the number of CES
patients is very small, we have found that there
are more of us than the medical community cares
to acknowledge. One reason for this
disparity is that CES is frequently undiagnosed
or misdiagnosed, and among our group are many
individuals who are now suffering because they
were not correctly diagnosed in time to prevent
permanent neurological damage. We want
people to understand the nature of CES and the
danger signs, and to realize that the chances of
recovering impaired neurological function are
dependent upon correct and timely diagnosis and
treatment.
We
also wish to emphasize that we are NOT expendable and our
pain is NOT acceptable and there is NO PERCENTAGE OF
FAILED SURGERY OR MIS-DIAGNOSIS THAT IS ACCEPTABLE. By
increasing awareness of this condition (particularly
within the medical community) and demanding more research
and more treatment options, we intend to improve the life
of current CES patients and prevent future generations
from suffering from CES.
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