My Cauda Equina Syndrome Journey

Cauda Equina Syndrome, not a term you have heard of? If you have then you may know someone, or yourself who is going through this. This blog is to focus on wellness and being happy, so I thought I would start off by explaining why I wanted to focus on being happy and the journey of my back issues and recovery. 

Cauda Equina Syndrome is a rare issue that happens with your spine when the disc matter from in between your vertebrae in your spine, pushes out into the spinal canal, then pushes on all the nerves that run down your spinal cord and control the movement and function of many parts of your body. Take a look at the NHS website for the full explanation on it to learn more.

I, of course, am not a doctor, or medical in any way, I am just sharing my Cauda Equina Syndrome journey with you and making you aware of this problem and how it affected me. Please take a look at the NHS for more information, and speak to your GP

My Cauda Equina Syndrome journey

My journey started back in July 2017, we had planned our first trip away with the children abroad. We visited my friend in Sweden and then back to Denmark to stay in Copenhagen. I had started to suffer from back pain, but this wasn’t anything unusual as I had suffered with it since my pregnancy with my son in 2004, and on and off after that. But this time it was different, I now know the pain was also sciatica, I didn’t know what this was back then or even more so why it was happening. Sciatica is a nerve pain that runs from the back, across your bum, down the thigh, knee, calf, and into the foot. This happens because the large sciatic nerve that runs from your spinal cord and follows that path down your body, is being pressed somewhere. Sometimes this can be because the muscles in your bum are trapping it, or pushing on it. It’s a big nerve and controls many lower body functions.

I was in a terrible amount of pain whilst on holiday and it really affected our time, I was struggling with walking, the pain was getting more and more intense and I just couldn’t get rid of it. The only way the pain would calm a bit was laying down, but then I had to lay on my back, with my knees bent up and not laying flat. When you lay flat it stretches out the sciatic nerve, and if it’s being restricted then it’s like pulling on an elastic band. At the time I didn’t have a clue what was happening with my body, the pain, or how I was going to deal with it. I just thought it was a back flare-up.

When we arrived back home the pain got worse and worse, the doctors were just offering my nerve-blocking medicines, pain relief, and not seeing me, all over the phone (pre covid too!) Every time I would speak to them they would just up the medicines. I ended up seeing one doctor face to face after a few weeks and I cried and cried. He offered no help, didn’t check me over, nothing. Referred me to the pain clinic…..I still haven’t heard from the pain clinic in 4 years, so don’t think he did refer me, just got me out of the room. I didn’t have the energy to fight, argue anything, the pain I was in just getting to the doctor’s surgery took it out of me.

Weeks went by, until one day I felt like something felt different in between my legs when I went to the toilet. I called 111 for their advice and an ambulance was sent out to me, and I was taken into A&E. At the time I knew nothing about Cauda Equina Syndrome, they just wanted me to see a doctor. I felt really silly being taken into A&E by ambulance, but the paramedics were lovely and very kind to me.

Cauda Equina Syndrome has some red flags and these must be listened to straight away, things can progress very quickly and if the doctors miss it the person can be left with long-term effects that will affect their lives and quality of life.

Cauda Equina Syndrome Red Flags NHS Website

• sciatica on both sides
• weakness or numbness in both legs that is severe or getting worse
• numbness around or under your genitals, or around your anus
• finding it hard to start peeing, can’t pee or can’t control when you pee – and this isn’t normal for you
• you don’t notice when you need to poo or can’t control when you poo – and this isn’t normal for you

These are all really serious and if you’re reading this and suffering from any of these, then you must go to A&E 

When I arrived at A&E it was around 11 pm and I was left until around 4:30 am to be seen by a spinal doctor. He went through a few questions with me and decided very quickly I wasn’t a problem and to be sent home. I felt very rushed, not listened to, and dismissed. If someone is suffering from these symptoms, the only way to know if someone has Cauda Equina Syndrome is an MRI scan. I wasn’t given this and wasn’t even considered. Off I was sent home, now remember I was drugged up on pain relief for weeks before this, high-level nerve blockers and I was still in a stupid amount of pain. More weeks went on by, I wasn’t going out much as I couldn’t walk with the pain getting worse with walking, wasn’t sleeping, and when trying to sleep I had about 6 different pillows and sleeping sat up with a slight tilt backward and knees up. I couldn’t bend my legs at all.

My husband dropped me over to my Mum’s to see her, get me out the house, and when I went to take my shoes off with my other foot (couldn’t bend to take them off!) I couldn’t lift my foot up. With my heel on the floor, I couldn’t lift the foot up to help take the other shoe off, it scared me so much. This is called Foot Drop, and basically, my sciatic nerve was being squashed by my disc bulge in my spine, so it couldn’t send messages down the leg to the foot to lift the foot up. I called the doctors straight away and they were good and I was seen straight away. He performed some nerve tests on my legs to see if they were reacting, nothing. Nothing happened to my foot, it was like it was turned off. He called the spinal department at the hospital and spoke directly to them. They said they would get in contact with me……..1 week later I heard from them. I would receive an appointment to see a neurology nurse.

I saw the neurology nurse a few weeks later, who decided I wasn’t urgent for an MRI scan and would wait another month for this scan. In the meantime see a physio. Honestly writing this down again, makes me so angry as all the signs were there, they just all ignored them.

I never made it to that MRI scan that was booked 1 month later

I saw the physio and she was amazing, she did so many checks on me and told me all the red flags I needed to watch out for. She was really concerned about me and would see me quite often. My foot still wasn’t working, and I had numbness down my leg, numbness in between my legs hadn’t gotten worse, or better and pain levels were high. I then got food poisoning, and that triggered a whole level of pain. The pain skyrocketed, and I got more and more numbness. I told GP’s I was ignored again. I had an amazing friend who (the one living in Sweden) and she was so concerned for me as she knew about Cauda Equina Syndrome. She told me to go to A&E, but after my last trip, I didn’t think I would be listened to. So I called the neurology department directly myself, and I was told to come straight to A&E. Then called back after 5 minutes to say come straight to the neurology ward where they will have an MRI scan waiting for me. I had this at 2 pm…….

When I came back up to the ward after my scan, I was greeted by a crowd of doctors and nurses, they were all waiting for me. The surgeon was there, and he told me that I would be having back surgery as my disc herniation was massive and this is what has been causing me the problems. I was just relieved someone had finally listened to me and acted. It meant I would be out of pain again, I would be able to get on with my life and be happy again. Little did I know then, the recovery from Cauda Equina Syndrome isn’t as straightforward at times, but not once did anyone call it that. It is on my MRI scan report though.

I had a very large disc herniation at my L4-L5 which was pushing into nearly all of my spine, I had a very small area where the nerves were squashed into and if the herniation had cut this small area off, I would have lost function of both my legs, bladder, and bowels. The longer these nerves are pushed on, the longer the blood supply isn’t getting to them and they will die off. This is when you can be left with permanent nerve issues, and why it’s so important to act quickly.

I had Lumbar decompression surgery and laminectomy surgery 

My operation went straight forward, my recovery was good the day after, and I was sent home after 2 nights on the ward. The physio had to sign me off first before I went home, checking I could do the stairs. My husband came to pick me up, and we had a big car but wow it was the most painful car journey. I felt every single bump, and he was trying to miss them as well!

My recovery at home was OK, I was surprised how much I could still do. You can’t lift or twist for a certain time after, so I did have some family help as I have 3 children as well, but it was OK. The sciatica pain had gone, but I was left with numbness. My leg was very numb and had constant pins and needles, but my foot drop started to get a bit better. I did however get an infection in my wound site and had a few weeks of antibiotics to make sure that cleared up well. You need to make sure this is kept on top of, as it’s so near your spinal cord.

Where am I now with my Cauda Equina Syndrome journey?

I am now over 4 years down the line with my Cauda Equina Syndrome recovery. I have struggled with pain in my back still, I think this is mostly down to muscles as they were all cut during the operation and I wasn’t given any aftercare. You need to make sure you see a physio straight after so you can start the slow process of building those muscles back up, stopping scar tissue healing incorrectly, and things from becoming too tight. I have weak core muscle, a very unstable spine that now hates to be pushed, it is constantly holding onto my spine and this makes the muscles very sore and tired.

I sadly also in December 2020 had another herniated disc from the same part of my spine, this resulted in another large part of disc matter coming out into the spinal cord area, causing foot drop, sciatica pain, and numbness of my leg. This time the disc matter had broken off and was free-floating in my spinal canal. This actually was beneficial to me! I spent a good couple of months not being able to walk due to the pain again, but as the disc matter was free-flowing my body saw it as a foreign body and was able to attack it and reabsorb it. So after about 4 months, my next MRI scan showed this part had been reabsorbed, and I was just left with a small part bulging out. However, it also meant I don’t have much disc matter left in my spine between these two vertebrae. When they operated they didn’t replace the disc matter, so now the bones are rubbing against each other and causing me a lot of pain. The surgeon would like to perform a spinal fusion for this area, which means I have some metal work placed above and below this area, a bone graft into the disc area, and then they will join together over 6months-1year and it will form one big vertebrae bone. Making it more stable and less painful.

The thought of this surgery is pretty scary and I am holding off on this, it’s a big operation, carries risks, and also it could cause the other discs to have more pressure put through them, and then they could herniate. I’m only 37 and so I don’t think I will get away with never having it done, but I am just scared of it going wrong and ending up in a worse place, with 3 children I need to think carefully right now.

So this brings me to where I am now, and trying to find a happier place, be more positive, and also try to help my back in my own way. I am seeing an osteopath, who has been amazing throughout. She listens to me, respects my body and the pain I do have, and comes up with a good way around things to help me. She was the one who flagged up the new issues to me and got me to act on them quickly. This time the doctors did listen, and they did help quickly. The osteopath sends me to Pilates lessons which are currently 1 to 1 session to help me learn how much I can do. Were both surprised at some of the things I can do, but my body soon tells me if I do something it doesn’t like! It will be slowly, but I already feel a little stronger and more positive.

It’s been a tough 4 years, for myself and my family, but I am very lucky to have amazing people around me that help me, support me, and love me, even when I’m having a rubbish day and in pain.

So I will share with you my Cauda Equina Syndrome journey through here, to become fitter, stronger, and hopefully stay away from the surgeon’s knife!!