Cauda Equina Syndrome Awareness Day

Hi, my name is Jo,

Back in 2019 I suffered extreme back pain leading me to attend accident and emergency when I realised, I could not feel myself pass urine.  I attended where I had an MRI, I was told all is fine and I could leave which I did.  I got a call that evening asking me why I had left the emergency department. I was told I was going to get an appointment with a consultant the following Friday. I went to said appointment, and it was with a Consultant I already knew and before I sat down, he said so you want some facet joints injected. I explained that I had numbness in my right foot severe pain and inability to feel myself pass urine. He did not examine me.  He spoke to a Dictaphone and the letter he was sending my GP was done there and then. 

I went back in the November 2019 and had worsening numbness and inability to know when I passed urine. I was told I was being seen the following week and to wait until then. The day of the injections came, and I yet again said about the red flags.  I also asked what would happen if this did not work. He told me he had a plan. So, then we get to December 2019 where I go again to accident and emergency, and they do an MRI where upon I was whisked up to London some 13 hours later where the following day I had surgery which should have taken 2 hours.  It took almost 12 with recovery the disc had calcified in my spinal canal, and they had to chip away at it slowly.

Fast forward to post op two days later they sent me home with a piece of paper telling me how to do my bowel care. That I think was the hardest part the pain seemed a little better I still could not feel myself passing urine and was told on of couple of occasions go back and try again as your bladder is still full.  I did what I was told.

Unfortunately, COVID hit so I had one session of hydrotherapy and one session of physio.  The rest is history really. Come the March 2020 my son goaded me enough and I got in the sea to do some exercises. The cold water was really cold. He came in with me he is a channel swimmer and used to the sea.  My lips turned blue and had a silly hat on my head no wet suit, but I got out buzzing I had never felt better well since the op at least.  My pain was easier my mobility was so much better.  I felt really good. Until I got out then it all came back but my head was still feeling the benefits of the water.  So that became my physio. 

I found the group and had a call with Alison who knew about the condition where most people don’t.  From that day the group has been so supportive. I could speak to so many people who had the same problems I had, and they had ways of dealing with it.  

I went back to work with some help from my colleagues and manager a few tweaks at work, but I was back. Not quite the same person I had been just a different version of myself.

I did contact a solicitor; I knew my care was wrong.  I knew as I work in an Urgent Care Unit as a Nurse Practitioner and I looked out for this condition, but I had been and had seen someone who knew more than me.  I felt let down.  My solicitor was amazing and supportive right till the end some 6 years later where just recently I settled out of court.  Whilst seeing all the different Consultants for my case they were helpful too like for instance finding out about Peristeen my saviour made my life so much better.  Asking to see the continence nurse who taught me double voiding as I don’t want to self-catheterise.  I know I should, but it is my one control so unless I really can’t manage that will be my last resort.  I was luckier than most.  I had access to people who knew what was needed. One of the consultants I saw asked why I hadn’t been sent to Stoke Manderville from hospital following the surgery, my only answer was and could be that they didn’t send me.  I have however been since, and they were amazing they noted my drop foot and wrote to my GP and asked them to refer me for my foot support again this was so helpful. 

So now what does my future hold the same as before although it has to be done in a different way, plans have to be made for toilet stops. The pain I manage with opiates but not having pain allows me to live a different life but a fairly good life.  The Life that I had before I sometimes mourn for, but you have to live your best life as best you can. 

I would like to think I can give back the support I have had to someone who may just be beginning their journey, and I am happy to do that for them.