What to do if Your Loved One is Diagnosed with Cauda Equina Syndrome

A diagnosis of cauda equina syndrome can be devastating and the long-term impact of this spinal condition can mean that very often patients struggle to get their lives back on track.

Like many debilitating conditions, a diagnosis of cauda equina syndrome can have serious implications for the whole family. It may be difficult to know where to turn to in circumstances such as these, but your role in the recovery of your loved one will likely prove to be invaluable.

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In many cases, people who are diagnosed with cauda equina syndrome can experience low self-esteem and body image issues because they are grieving the loss of their former life. It is not uncommon for those who have recently been diagnosed to suffer from depression.

These factors can contribute to family members also suffering from mental health problems. Very often, they grieve the loss of the person affected, and the future you imagined they would have.

“My children had to step up and do almost all the household chores, they had to miss out on spending time together as I was too tired or in too much pain. Also, my youngest daughter has anxiety about me falling over and hurting myself again. She worries all the time.”

- Claire Thornber, Founder of the Cauda Equina Syndrome Association, who was diagnosed with cauda equina syndrome in 2010

1. Be patient

When your loved one returns from a period in hospital, it will take time for them to adjust, both emotionally and physically. Activities that were once simple and uncomplicated have likely become impossible to carry out - and it is likely that this will be a source of frustration for them.

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In such a heightened situation, you will undoubtedly be under a large amount of stress, which can exacerbate your emotions considerably. However, when you begin to feel overwhelmed, remember you are not alone.

Patience is key for helping the family to adjust to a brand new, somewhat challenging home environment.

2. Highlight positive milestones

Attempt to point out positive moments by making the effort to reinforce small achievements and any major milestones that occur on the road to recovery. This will play a vital role in boosting the individual’s confidence in their own ability and encourage them to take small steps towards a better quality of life.

Try to keep the focus away from mourning the hobbies and activities your loved one can no longer do. Instead, encourage them to try out new recreational activities that their abilities allow them to do. This can include anything from sitting in the garden on a warm day or taking a day trip with the family.

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3. Become an expert

Unfortunately, cauda equina syndrome is largely misunderstood by medical professionals, which means very often patients feel they have to fight to get the care they need. Even in cases that have been diagnosed, those affected do not always get the treatment they require.

If your loved one has been diagnosed, take the time to learn as much about the condition as possible, including the invisible but extremely distressing symptoms such as bowel and bladder incontinence, which can actually be some of the most devastating.

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“My mum told me there were people much worse off than me and basically to get a grip - there was little empathy from my mum and dad. My sister had to support me more and was upset by it all.”

- Claire Thornber

4. Listen

A lack of support from healthcare services means many are isolated from family and friends who struggle to comprehend the complex and personal issues surrounding this invisible condition.

For this reason, it is essential to provide emotional support to those affected by listening as much as possible, and working to create an environment where your loved one feels comfortable to discuss what they are experiencing.

In particular, do not shy away from ‘awkward’ conversations about some of the symptoms of cauda equina syndrome that your loved one may be afraid of experiencing.

5. Take care of yourself

You may find it difficult to express how your loved one’s diagnosis has affected you - especially to that person in particular. It is common for relatives of individuals with cauda equina syndrome to harbour feelings of helplessness, guilt and isolation.

However, it is important to take care of your own needs, as well as theirs. There are a number of organisations that can provide much-needed support if you are in this position.

These include:

CESA

Back-Up Trust

Spinal Injuries Association

In addition, there are online forums and support groups that can provide peer guidance on the best ways to navigate such testing times. This type of support can also offer resources that will help you in your role as the primary caregiver.

Some forums include:

The Inspired Spinal Cord Injury Forum

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As a family member or friend of someone living with cauda equina syndrome, your role may revolve around helping the patient to begin their journey of recovery and acceptance. This involves feeling comfortable both emotionally and physically.

However, being a carer is extremely demanding, and it is important that you take steps to an improved quality of life for yourself too. Remember, support is available for individuals and their families who have been affected by cauda equina syndrome.

Find out more about how JMW can help individuals with Cauda Equina Syndrome

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