The Costs of Living with Cauda Equina Syndrome

The Costs of Living with…

Cauda equina syndrome is a medical and surgical emergency. This rare, but serious neurological condition may have a rapid or gradual onset and can, if not treated promptly, lead to severe and permanent disability. “Cauda equina” is Latin for “horse’s tail,” and it refers to the bundle of nerves at the base of the spine. When the nerve roots in the lumbar spine are compressed, sensation and movement may be affected. Cauda equina syndrome can lead to loss of bladder, bowel, and sexual function and permanent paralysis.

Because cauda equina syndrome is somewhat uncommon, most patients have never heard of it until they are diagnosed. The early symptoms, including pain and weakness in the lower extremities, back pain, and altered sensation in the “saddle region” (buttocks and inner thighs) may all be caused by other ailments, and some doctors may take a “wait and see” approach to give symptoms a chance to improve. Unfortunately, in the case of cauda equina syndrome, delaying treatment is likely to result in irreversible damage, and may constitute medical malpractice on the physician’s part.

Financial Costs of Living with Cauda Equina Syndrome

If you are reading this article, it’s likely that you or someone you care about was recently diagnosed with cauda equina syndrome (CES), and you are trying to figure out what comes next. Part of being prepared to deal with CES means anticipating the limitations you may have, and the financial cost of addressing those limitations.

One of the biggest financial issues for individuals living with CES is loss or limitation of the ability to work. Lost earnings will depend in large part on the age of the patient (how many working years they have ahead of them); the severity of the injury; and the nature of work. A thirty-year-old surgeon with severe injury may no longer have the ability to walk, stand and exercise the motor control that their job demands. Such a patient would obviously have higher damages for lost earnings than a 65-year-old office manager with mild injury and a desk job.

Another major financial cost for people living with CES is the need for ongoing treatment or care. To maximize quality of life, CES patients often need pain management, physical therapy, treatment for bowel and bladder issues, medication and medical equipment (such as catheters).

Spinal cord injuries that lead to loss of function commonly result in grief and depression. People learning to navigate life after such an injury often benefit from counseling in which they can explore their feelings and learn coping mechanisms.

In addition to lost earnings and the cost of medical treatment, people with cauda equina syndrome may have expenses relating to:

  • The need for in-home health care and other help around the house;
  • Home modifications required to accommodate their physical limitations, such as installing ramps and widening doorways if a wheelchair is needed;
  • Equipment to improve mobility and quality of life, such as motorized wheelchairs and vehicles with hand controls.

It is a complex process to assess a complete financial figure on what these supports are likely to cost, because their need will depend heavily on each individual’s situation. For instance, while some people with cauda equina syndrome may need a wheelchair some of the time, many people retain at least some ability to walk.

In some ways, though, it is easier to calculate economic damages in an individual case than to put a dollar figure on non-economic damages. While not financial in nature, those damages are just as real, and can be significant.

Personal Costs of Living with Cauda Equina Syndrome

Cauda equina syndrome is life changing. It is common and natural both to grieve loss of function and to be apprehensive about what physical limitations mean about future quality of life. These personal costs may not have a price tag, per se, but they do have a value. People whose cauda equina syndrome was caused or worsened by medical malpractice deserve to be compensated for these losses, too. For instance, CES can make physical intimacy or caring for children more difficult, posing challenges to personal relationships.

A study of the lived experiences of patients living with CES identified a number of personal struggles that are common to those with the syndrome. Many were dissatisfied with the treatment they received, and felt abandoned to face their new physical challenges on their own. Many patients felt that their symptoms were disbelieved or minimized by the healthcare system prior to their diagnosis; some were even treated as if they were “making things up.” Often, patients do not receive the validation from medical professionals that they need and deserve.

Another overarching theme of patients’ experiences was struggling with the often “hidden” nature of their disability. Because most people with CES can still walk, others may not see the intense pain and struggle involved in attempting to live a “normal” life. Individuals living with CES understandably feel that their lives have been profoundly changed. Others may not see, or know how to respond to, those changes.

Physical issues, like loss of sexual function or mobility, can have a real and serious effect on self-concept and hope for the future. Patients often struggle to integrate their illness into their identity, sometimes feeling like a completely different person from before their injury, sometimes feeling like the same person, but with some challenges.

If you have been diagnosed with cauda equina syndrome, some of those feelings and worries may be familiar to you. If so, please know that you are not alone. And though no amount of money can truly compensate you for your loss, it is important that you have the resources you need to live your best life. That may mean filing a claim for medical malpractice against the professionals who failed to promptly identify and treat your illness. Not only can a financial recovery help you get the support you need to live well, it can help give you a sense of justice and hold medical providers accountable—perhaps helping someone else.

If you have questions about the costs of living with cauda equina syndrome, please contact The Fraser Law Firm P.C. to schedule a consultation. We look forward to working with you.