If you have recently been diagnosed with cauda equina syndrome (CES), or you are trying to help a loved one dealing with the diagnosis, it can be a little overwhelming. It’s likely that you don’t know anyone else with the condition; estimates of its incidence range from 0.3 to 7.0 patients per 100,000 population. Because cauda equina syndrome is relatively rare, and because the symptoms of CES can be unpleasant, the condition can be isolating. In order to live the fullest life possible, it is critical for both patients and caregivers to have access to support and resources.
Unlike with more common diseases, people dealing with cauda equina syndrome probably won’t find local support groups and charities devoted to their condition. Fortunately, the internet literally opens up a world of resources for those coping with cauda equina syndrome.
Like anyone coping with a new and serious diagnosis, CES patients naturally want to understand everything possible about their condition, including treatment options and prognosis. As with any subject on the internet, some websites are more reputable than others. Here are some that are trustworthy and highly-regarded for the resources they provide.
The place to begin is the Cauda Equina Foundation, which offers education, support, and other resources to patients and their families as well as professionals. The Cauda Equina Foundation site offers a list of doctors who specialize in CES, as well as the option to add your own physician’s name to the database to help other patients in the area. The website also offers CES patients the opportunity to participate in a patient registry and Natural History Study to help researchers learn more about cauda equina syndrome. Of most interest to newly-diagnosed patients and their families are the options for finding support and understanding through the site. Sometimes, just finding someone who understands your experience is a tremendous relief.
You can also learn more about cauda equina syndrome through medical organizations such as the American Academy of Orthopaedic Surgeons and the American Association of Neurological Surgeons. Learning about the condition, its causes, and treatments can help you get your arms around what you can expect to deal with. Education is an important foundation, but what most CES patients find most helpful is understanding what other people have gone through, and how they learned to cope with this neurological condition.
The Cauda Equina Syndrome Association (CESA) is an organization in the U.K. founded by a CES patient. While CESA does not offer an online support group on its website, reading the founder’s story offers guidance about the importance of advocating for yourself with this condition. CESA is patient-led and not for profit, and helps to raise awareness of CES. You can also visit the CESA Facebook page.
Facebook has offered a way for people diagnosed with many rare diseases to connect and find support, and cauda equina syndrome is no exception. Facebook-based support groups for CES include:
The membership of these groups ranges from several hundred to a few thousand. Most of the groups are private, meaning that anyone can find the group online and ask to join, but only members who have been admitted can see posts and post to the group themselves. This allows members to post about sensitive topics more freely, knowing that only those in a similar situation will see their posts and be able to respond.
While the CES community is relatively small, you may also be able to find valuable support and resources through organizations that deal with spinal cord injuries more generally, including FacingDisability.com, BackUp, and Spinal Injuries Association.
Unfortunately, because cauda equina syndrome is a relatively rare condition, patients often struggle to get the treatment and therapies they need to recover as fully as possible or to live with cauda equina syndrome. This is a condition in which prompt diagnosis and treatment makes a definite difference in a patient’s prognosis.
Accordingly, if a physician sees a patient who exhibits common signs of cauda equina syndrome and fails to act quickly and appropriately, the patient could suffer severe and permanent disability. Not all negative outcomes from CES are a doctor’s fault, but if the doctor fails to observe the appropriate standard of care, they may be liable for medical malpractice.
Holding a negligent physician accountable can provide a sense of empowerment for a patient. Importantly, it can also provide the patient and their family with compensation that will help them to live their best lives in the wake of this serious diagnosis.
To learn more about your legal options if you have cauda equina syndrome, please contact The Fraser Law Firm P.C. to schedule a consultation.
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