Living With Cauda Equina Syndrome

Research into people living with cauda equina syndrome (CES) has demonstrated continuing problems with the bowel, bladder, sexual and physical function years after surgery. This can mean that treatment does not end after an operation. Physiotherapy, occupational therapy, continence management, pain management, urological care and other forms of rehabilitation may become part of a person’s longer-term life. There can also be a considerable emotional adjustment. You may be trying to understand what has happened to your body while simultaneously learning how to manage things you never previously had to think about. A journey may need to be planned around toilet access, going out for the evening may require a change of clothes or continence products, a day at work may depend on whether regular breaks are possible. Intimacy with a partner may have changed. Even showering, getting dressed and moving around the house can require more thought, more time, more effort.

One of the greatest difficulties of living with CES is losing independence. Having to ask a partner, family member or carer for assistance can affect confidence, relationships and emotional wellbeing.

Your Home May Have To Change

An occupational therapist can assess what you can and cannot manage safely around the home and therefore recommend the appropriate adaptations such as grab rails, a stair lift, ramps and in some cases organising to live downstairs. Adaptations such as these are not just about making life easier but about making it possible to live with as much independence as before.

Work, Money & The Future

You may technically be able to continue working but find that pain, fatigue, mobility difficulties or continence problems make a full working day impossible. Workplace adjustments can sometimes help including working from home, working flexible hours and taking additional breaks. There may also be financial support available. In England and Wales, Personal Independent Payment (PIP) can help with living costs where a long-term condition or disability causes difficulties with everyday activities. It is based on how a person’s condition affects them rather than simply on the diagnosis they have received.

The Parts People Find Hardest To Talk About

Bladder and bowel problems are difficult enough but sexual dysfunction can be even harder to discuss. Nerve damage associated with CES can affect sexual sensation and function including arousal and orgasm, changes that in turn have a profound effect on intimacy and relationships. They can be accompanied by embarrassment or a feeling that such a subject should not be talked about at all. They should be! Sexual health and relationships are an important part of a person’s wellbeing and should not be overlooked because they are difficult to discuss. The same applies to emotional wellbeing, frustration, anger, anxiety, even grief about the changes CES has brought are all understandable responses to what may be for you, life altering.

We know how devastating a cauda equina syndrome diagnosis can be and the subsequent impacts this can have. You may understandably have questions about your future, perhaps even whether things could have been different, to want to understand what happened and why.

Speaking to a solicitor experienced in medical negligence can help to clarify and potentially put in motion a claim for compensation.