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:

  1. 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.

  2. 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

  3. 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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Copyright © 2000 Cauda Equina Syndrome Support Group

  The information in Cauda Equina Syndrome Resource Center is not intended to substitute for medical professional advice but is to be used only as an aid in understanding this condition. This site is not maintained by physicians. No medical decision should be made based on information in this site. A physician should always be consulted for any health problem or medical condition. This site is a compilation of CES patientsí thoughts, ideas and discussions, which we hope you will find useful, but it is not medical advice.  
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