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Living with Cauda Equina Syndrome - interview
Today I have caught up with Alison Whitehorn to talk about her life living with Cauda Equina Syndrome. Alison is a Peer Support Champion for the 'Cauda Equina champions' Charity. The charity has an extensive network of support offered across the UK and is constantly working towards reaching as many people as possible to raise awareness of cauda equina.
CESA was founded by Clare Thornber following her own CES injury. A huge herniated disc in her lower back compressed the nerves at the base of her spinal cord, leading to permanent, life changing injuries.
Her traumatic experience of emergency treatment, followed by a lack of support and services, highlighted the need for a patient support group.
She heads up the Association and is supported by staff and volunteers whose lives have all been touched by CES.
Can you tell me a bit about your own experience of Cauda Equina Syndrome? When did you receive your diagnosis of cauda equina?
I was diagnosed with Cauda Equina on 17 November 2014.
I had back surgery, and a discectomy, and was discharged within 24 hours.No-one explained to me what Cauda Equina Syndrome was, and there was no follow up or aftercare.
After surgery, I could walk slowly, and assumed my symptoms would improve within the next few weeks. I had problems passing urine but assumed this was all from the disc surgery I had had and would settle down with time.
I struggled with bowel movements and was extremely constipated. I put this down to the surgery at first as well.
A few weeks after my surgery, I received a detailed report of the operation. This contained a lot of information and included the diagnosis of Cauda Equina. I found out I had had a discectomy and laminectomy procedure, and the MRI scan had shown a total obliteration of the spinal canal. It was then that I looked up the diagnosis online. That was the first time I had heard the term.
Had you heard about Cauda Equina Syndrome before your own experience?
I had never heard about Cauda Equina before my diagnosis.
After I received the diagnosis, I called my GP and asked to talk to him about the diagnosis.He explained that the condition is very rare, and that he had never seen a case before.
I asked for physiotherapy treatment, and some help with my bladder and bowel issues. The GP arranged for me to see someone at a bladder clinic, and a nurse came to show me how to do self-catheterisation. This was awful, as she could not understand why I could not feel anything, and therefore found it almost impossible to do, as I was unable to stand as well.
I remember having a conversation when the nurse repeatedly said “when you feel …”.I kept telling her I could not feel a thing. She did not really understand, and I was left thinking I had no idea how I was going to manage my condition. It was so daunting.
I never received any physiotherapy. I arrived for an appointment, but was in a lot of pain and struggling to walk. The physio said that she could not touch me given the condition and the pain I was in, and I would need a specialist neuro-physiotherapist to treat me.
What are your symptoms of Cauda Equina Syndrome now?
Unfortunately, I was left unable to walk or stand and needed a wheelchair. I had to purchase one privately from medical suppliers but it was very heavy and uncomfortable.
After my diagnosis, I became low and depressed. I would not go out. I was unable to get around the house. People stopped coming to see me.
Friends and family did not really understand my condition and talked about their own experiences of back pain, which was nothing like what I had been through. Friends would say “you look well”, but they had not seen the two hours it took to get ready to go out.In the evening, I would often find myself crying with the pain, but also over what I had lost.
I could not feel my legs or feet. The pain was bad, and the nerve pain gave me sensations like electric shocks and spasms. I would get cramps in my feet and legs every day and night.
What support was available to you after your surgery, diagnosis and discharge home?
I did not really get very much help after my surgery and discharge.
After the incident with the nurse and self-catheterisation, I remember looking up online how to use a catheter. I came across a page for the Spinal Injuries Association, and contacted them and spoke to someone for over an hour.
The person I spoke to explained I had an incomplete spinal cord injury, and that the symptoms I had were common. They were clear that I needed to sort out my bladder and bowel issues as soon as possible.
A peer support officer came to meet me and went through everything with me that week. They were very concerned that I was not having any help or support.
It was then that I heard about the charity, Cauda Equina Support Association (CESA).
I was also directed to the Spinal Injury Unit in Salisbury and met Damien Smith, their outreach spinal nurse, who came to my home to assess me and take notes.
I then had some treatment at the Spinal Unit, including an ultrasound scan on my bladder and bowels. I was told to catheterise four to six times a day, and I was told my bowels were impacted. I was given medication to help with that. Unfortunately, still, no-one had shown me how to use the catheter properly, and it took another three years before somebody finally managed to show me how to do it properly.
What symptoms did you have before your diagnosis of Cauda Equina Syndrome (Red Flag Symptoms)?
I had a long history of sciatica, but I developed issues with my bladder and I was struggling to empty my bowels.
I noted numbness when wiping after going to the toilet, and developed dropped foot alongside excruciating lumbar back pain.
I also developed shooting pains down one leg and found it difficult to walk upright due to the back pain.
What support was CESA able to offer you?
I really feel that the charity saved me. They gave me a lot of support about all of my medical issues. They also offered support to my husband. I feel after I had their support, I never looked back. I think if I had not found the charity at a crucial time, I would have been in a really bad place. I did not know where to turn, and I did not feel I was being heard or believed about the extent of my ongoing symptoms.
How did you come to help the charity in a peer support role?
I attended a few support group meetings and got to know other members. I discovered so much information at the meetings about the condition, about bladder and bowel issues, how to mentally cope with the condition, how to manage pain and practical things on work and money.
The support group meetings were a life saver. I also became firm friends with Claire Thornber, the founder of CESA. She helped me so much.
I wanted to prevent anyone else falling through the holes like I did. I offered to become a peer support officer, and I help arrange meetings in my local area. These have been a great success; I want to do more to be there for people with this condition.
Do you think enough is known about red flags and Cauda Equina Syndrome?
I am now aware of red flags, and the symptoms that indicate this is an urgent condition and more than just “back pain”.However, I still think further work is needed to bring this awareness to the forefront of all GPs and A&E consultants, dealing with anybody with serious back pain who presents with these symptoms.
In my view, a simple MRI scan can prevent all the suffering I experienced so that the condition can be caught, diagnosed and treated early.
Once a patient has Cauda Equina Syndrome, they are going to have symptoms for the rest of their life. They are going to need ongoing support from the NHS, and in my view, this can all be avoided with a timely diagnosis.
The red flags need to be understood and recognised as being as important as those indicative of a stroke or heart attack.Time is definitely of the essence.
In my view, all Cauda Equina patients should also be referred to a spinal cord unit post surgery. There they can access the help and support to help them begin to rebuild their life, so they are not left struggling and alone and forgotten like me.
Are you concerned that people are not seeking medical treatment now, with COVID19? Do you think people are more reluctant to seek medical help?
I am concerned that hospitals are overlooking urgent new cases, and not just of Cauda Equina Syndrome.
It is important that people recognise when they have symptoms that are indicative of a more serious condition, and they still seek urgent medical treatment.
I know that people are scared to go near hospitals during this pandemic, but it is so important that anybody who is worried about a serious medical condition seeks medical help.
What are the implications for you of living with CES?
I cannot work due to my ongoing difficulties. I cannot walk, and I can really only stand for seconds. I am no longer independent like I was. I need to visit the bathroom regularly because of my bowel and bladder issues, and I need help at home with tasks and have frequent hospital visits.
I have other issues within my spine and neck, and I am waiting for surgery. As a result, I have a condition called Autonomic Dysreflexia. I have to take a slow releasing drug to try and help.
Externally, to some degree, I feel this is an invisible disability.I often get asked why I am in a wheelchair as a result of Cauda Equina Syndrome. It is not classified as a serious spinal cord injury by people and the full extent of the injury remains a mystery to many.
How does it affect your everyday life?
Cauda Equina has turned my life upside down. My relationship with my family is strained, as they do not really understand my condition. I require a companion to travel, as I cannot walk. I am in a wheelchair but have issues wheeling myself.
Financially, the condition has affected us. I do not think any employers are keen to take somebody on who has such complex needs and disabilities and can spend the day in so much pain and discomfort. Fatigue is a big issue as well.
I cannot just go out. I have to plan and arrange every outing.
It became difficult living in our family house, as I could not use the stairs. We tried to adapt the property, but due to the stairs and narrow hallway, we had to move. I could not secure a mortgage as I was disabled and with no income. My husband was in receipt of his pension, and we ended up downsizing to a small bungalow which still needs to be adapted fully to meet my needs.
How do you cope with the mental health side of the condition and living with the disability?
I still have issues with denial.
My condition affects the entire family and it has been a really big upheaval.I still find that family and friends do not really understand my condition.
I feel I have had to make a lot of sacrifices as a result of my condition and had very little by way of gains. However, I do think I have been able to secure new friends from being a part of the CES support group and that has been a really big positive step for me.
I find that my condition affects me most when I go to the hospital, and there is still a lot of ignorance around Cauda Equina Syndrome and the associated symptoms. I do not think I have met anyone in the medical world who fully understands what I have. It is a very complex condition.
What is the aim of the support group set up at CESA?
The aim of the support group, and the charity as a whole, is to be there for other Cauda Equina sufferers. We offer a listening ear and let other members support one another, in a safe space where they can talk together about their condition.
The charity also aims to raise awareness about the condition and the red flag symptoms so that people can seek urgent medical treatment if they have them.
The charity holds regular meetings with professional speakers and other members to offer ongoing support to the people that need it most.
There is no follow up after care pathway once Cauda Equina Syndrome is diagnosed, and surgery has been carried out. So many people like me are sent home with no aftercare or support, and they do not understand their injury.
The aim of CESA is to help support them through their recovery and to better understand the longer term implications of Cauda Equina Syndrome.
I really appreciated the friendly, efficient and supportive nature of the solicitor.
I would also like to express my thanks to you for your dedication in chasing the defendant's insurance company especially where COVID-19 made an impact.
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