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Background <p>Cauda Equina Syndrome (CES) is a serious neurological condition marked by red flag symptoms such as saddle anaesthesia, bowel &amp; bladder dysfunction, and lower limb weakness. Early diagnosis and intervention are crucial to limit the risk of long term neurological injury.</p> Aim <p>The long-term morbidity related to CES remain underexplored, the purpose was to assess patient perspectives on the sequelae of CES and the available medical support.</p> Methods <p>A 34-question survey was distributed to 130 individuals with a CES diagnosis via the registered charity Spinal Injuries Ireland. The survey assessed initial presentation, diagnosis and treatment timelines, access to post-surgical rehabilitation, and the long-term physical, psychological, and socioeconomic impacts of CES.</p> Results <p>There was a 72% response rate. A significant proportion (16.7%) delayed seeking care after symptom onset for over a month, highlighting gaps in awareness. Poor resolution of symptoms was common, with respondents reporting ongoing frequent to major distress caused by radicular pain (43%), urinary (40.1%), bowel (44%) and sexual (54.8%) symptoms. Only 28.2% of respondents had been offered access to sexual therapy. Effects on mental health were stark, with 96% reporting associated mood disorders and 33.3% requiring pharmacological intervention for these. Employment rates post-diagnosis dropped from 78.5% to 24.7%, with pain (38%), continence issues (30%), and mobility challenges (36%) as primary barriers to returning.</p> Conclusion <p>CES presents significant long-term challenges, with high rates of unresolved symptoms and poor return to work. The under reported and resourced reality of associated sexual dysfunction and psychological burden is demonstrated, as well as the impact of poor information from health providers. This highlights areas of significant unmet needs to target for improvement.</p>

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The “Silent Disability”- examining patient perspectives on the diagnosis, management and the long-term implications of cauda equina syndrome in Ireland

  • 期刊论文

  • 发表日期：

    2026年4月13日

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  • Orla Hennessy,
  • Tom R. Doyle,
  • Eimear Smith,
  • Marcus Timlin

摘要

Background

Cauda Equina Syndrome (CES) is a serious neurological condition marked by red flag symptoms such as saddle anaesthesia, bowel & bladder dysfunction, and lower limb weakness. Early diagnosis and intervention are crucial to limit the risk of long term neurological injury.

Aim

The long-term morbidity related to CES remain underexplored, the purpose was to assess patient perspectives on the sequelae of CES and the available medical support.

Methods

A 34-question survey was distributed to 130 individuals with a CES diagnosis via the registered charity Spinal Injuries Ireland. The survey assessed initial presentation, diagnosis and treatment timelines, access to post-surgical rehabilitation, and the long-term physical, psychological, and socioeconomic impacts of CES.

Results

There was a 72% response rate. A significant proportion (16.7%) delayed seeking care after symptom onset for over a month, highlighting gaps in awareness. Poor resolution of symptoms was common, with respondents reporting ongoing frequent to major distress caused by radicular pain (43%), urinary (40.1%), bowel (44%) and sexual (54.8%) symptoms. Only 28.2% of respondents had been offered access to sexual therapy. Effects on mental health were stark, with 96% reporting associated mood disorders and 33.3% requiring pharmacological intervention for these. Employment rates post-diagnosis dropped from 78.5% to 24.7%, with pain (38%), continence issues (30%), and mobility challenges (36%) as primary barriers to returning.

Conclusion

CES presents significant long-term challenges, with high rates of unresolved symptoms and poor return to work. The under reported and resourced reality of associated sexual dysfunction and psychological burden is demonstrated, as well as the impact of poor information from health providers. This highlights areas of significant unmet needs to target for improvement.