Support Danni in her journey with Cauda Equina Syndrome!

Hi! My name is Danni, I'm thirty three and live in Ashford Kent with my boyfriend, Don. I have two stepdaughters who are nine and sixteen.

It has been a difficult year or so with various things going wrong. At the beginning of June, I was looking forward to a quiet weekend sorting out the garden. However, that wasn't to be and I ended up in hospital for emergency surgery for Cauda Equina Syndrome!

I am not usually one to reach out and don't post much online. However, I'm in need of some help right now, please! This is my story about what has happened and the assistance I require.

My back story:

When I was nine, I started playing for a local football team and this is when my back pain began. Until the age of sixteen, I was either playing in matches or training about three to four times a week. I recently joked with my school friends about how I used to smell of deep heat throughout our school years!

In September 2020, I experienced sciatica for the first time. It ruined my thirtieth birthday weekend away with my mum and cousin, as I could barely walk! I recovered with help from an osteopath and lots of stretches. In June 2023, I got sciatica again but it was not as bad as the previous time. I ended up with a numb ankle, which lead to an embarrassing fall that caused a sprain and a visit to the urgent treatment centre!

At the end of May 2024, I again got some sciatica pain which was manageable until 6th June...

Thursday 6th June 2024:

I had stayed the night at my mum's house, but, at around 6.30am, my back pain intensified as I stood up. It was excruciating and I woke my mum and brother with my cries! I managed to lay down and alternated between ice and heat on my back. I noticed the right side of my buttock and genital area was numb. The back pain subsided, but I still had pain in my buttock and thigh on my right leg.

I did not realise this could be a medical emergency and called 111 and they advised to go to A&E to get checked over, but they did not believe the symptoms presented indicated anything serious. I visited Maidstone Hospital's A&E later that morning.

At Maidstone Hospital, I had a blood test and rectal examination. I also felt as though I had a burning sensation when passing urine, so the doctor did a bladder scan and I was told I was not retaining urine.

The doctor mentioned Cauda Equina Syndrome, which I had never heard of before. However, they were happy that I did not have this and informed me that I did not meet the criteria for an MRI scan. I was sent home with painkillers and told to return if symptoms persisted for longer than two weeks, or if any new symptoms arose.

Friday 7th June 2024:

I worked from home in the morning and, at lunchtime, I decided that I needed to go to A&E again. I was having trouble urinating and the pain in my right buttock and leg was just as severe. I also could not feel my anus and found it difficult to tell if I was passing a bowel movement. I was also extremely tired having not slept much in the past week due to the pain.

Don took me to A&E at William Harvey Hospital, which is our local hospital, at about 1pm. Unfortunately, I had to wait until around 7pm to be seen by the doctor. Again, I had a rectal examination (which I could barely feel), a urine test and diabetes test. I was very anxious and, when I was out of the room, the doctor said to Don that he was certain there was nothing seriously wrong, as he would be sending me by ambulance to Kings College Hospital in London if he felt there was. However, he arranged an MRI scan for the following morning at 8am to try and ascertain the issue.

We returned home that evening and, again, I couldn't sleep due to the pain. The painkillers given to me by Maidstone Hospital would work for about an hour before I was in agony again.

Saturday 8th June 2024:

As requested, Don and I went to the William Harvey Hospital at 8am to be triaged and sent to Majors Assessment. The MRI scan had actually scheduled for 10.30am, so we had to wait for a couple of hours.

I had my MRI scan and was sent back to Majors Assessment to wait to see a doctor for the results. At around 12pm, we saw the doctor who showed us the MRI images and informed us of the problem. The report I was given states the issue as the following:

'Large right posterolateral disc extrusion at L5/S1 level causing cauda equina completion particularly on the right side narrowing the spinal canal and lateral recess. Posterocentral disc protrusion also seen at T11/T12 level and also at L4/L5 level.'

This MRI scan shows Cauda Equina Syndrome at L5/S1:

The doctor explained that the MRI images had been sent to the Neurosurgery department at Kings College Hospital for assessment, so I would need to wait in the waiting area until there was a response from them. I was told not to eat and to drink only small amounts of water. Luckily, I had eaten a hospital sandwich at 11.30am! At around 3.30pm, I was told not to drink any longer. I knew that surgery was impending!

Unfortunately, I had a long wait as Kings did not respond until 8pm asking for me to be sent to them via blue light transfer immediately. I was struggling to urinate at this point and had had multiple bladder scans showing my bladder was retaining 200ml of urine, but, luckily, I avoided having to have a catheter.

An ambulance arrived for me at approximately 9pm. I was very confused about what was happening as all I had really been told was that I was being transferred to Kings. The paramedics were amazing and were the first to confirm that I had Cauda Equina Syndrome. They also discussed with me the type of surgery that would likely be undertaken.

Upon arrival at Kings, I was sent to an individual assessment room. Don had gone home to get some things I would need and met me at the hospital. I had a cannula inserted, blood taken and was given pain relief and fluids. I was very hungry and thirsty by now!

One of the neurosurgeons visited and explained that I definitely had Cauda Equina Syndrome and would require a L5/S1 Laminectomy and Microdiscectomy procedure. He informed that the surgery was not guaranteed to bring any sensation back to my buttocks or genitals, as well as potentially not improving my bowel or bladder function. There could also be sexual disfunction due to the lack of feeling in my genitals. Basically, the surgery would just stop things getting worse.

The surgeon gave me a link to a booklet about Cauda Equina Syndrome, which I have since read. However, I was in a bit of a state about everything and did not fully read or comprehend the information prior to surgery.

The surgeon stated that I would be the first patient for surgery in the morning at 8:30am. By this time, it was around 2am and I was not allowed anything to eat. However, I was allowed a small amount of water, thankfully.

So, what is Cauda Equina Syndrome?

Cauda Equina Syndrome (CES) is compression of the spinal nerves at the tail end of the spinal cord. These nerves are responsible for controlling bladder and bowel function, as well as sensation in and around your genitals, back passage, bladder and bowel.

When these nerves become compressed it can affect their function, and urgent attention is needed. It is rare, occurring in one to three in 100,000 people.

More information can be found at:

https://spinesurgeons.ac.uk/Cauda-Equina-Syndrome

Sunday 9th June 2024:

At around 6am, I was transferred to a ward for an ECG, MRSA swabs and a pregnancy test. I was helped into a gown and compression socks. I was asked to sign consent forms and the anaesthetist then visited to explain the process of administering a general anaesthetic and the risks associated with the surgery.

The surgeons who would be performing the operation then visited to explain what they would be doing. Anyone who knows me well will know that I am very squeamish, so I didn't really listen properly to what was being said. I was very nervous and am lucky that Don was by my side to take in what was being explained, even if he had not slept in over 24 hours!

At around 11am, which was later than originally scheduled, I was wheeled down to the operating theatre. I said goodbye to Don and went into the theatre. Taylor Swift music was playing whilst I was given oxygen, which made me smile as it made me think of my sixteen year old stepdaughter! After receiving oxygen, the anaesthetic was given and I was asleep!

The surgery was planned to take around two hours but ended up taking around four and a half hours. In recovery, I woke up to be told I had wet myself! I had low oxygen levels and a high pulse rate. My memory is hazy, but I do remember speaking to the surgeon who told me the surgery had gone well with no complications, although I cannot remember anything else that he said!

After leaving recovery, I was moved to the Murray Falconer ward and had my own little room, which eased my anxiety slightly. Don, my mum and my brother visited me and I was able to have something to eat and drink.

My oxygen levels were still really low so I had to be given oxygen continuously overnight. It was an uncomfortable night and, although I was absolutely exhausted, I didn't really sleep well.

I was given painkillers and laxatives, as well as injections to prevent blood clots. I also had to have another blood test, urine test and a lot of pulse and blood pressure checks!

Monday 10th June 2024:

I was incredibly emotional and anxious on the Monday. I kept randomly bursting into tears! I think the shock of the last few days had hit me.

I had let my work colleagues know what was happening over the weekend, but Don called my manager to let her know that I would be off work for a minimum of six weeks. Don, luckily, was able to take the week off work to support me.

In the afternoon, the surgeon visited and explained my operation to me. I was informed that, as the muscles in my back had to be parted to reach my spine, there were internal stitches as well as the external ones. The surgeon showed me photos from the surgery, including one of the amount of disc that had been removed. Not what I really wanted to see, but it gave me a greater understanding!

In the afternoon, Don and my mum visited. I was allowed to be taken in a wheelchair to the hospital's Costa Coffee. I was able to walk a short amount but was very unsteady and dizzy. I was cheered up immensely by a facetime from my nine year old stepdaughter whilst I was being wheeled around the hospital!

Tuesday 11th June 2024:

In the morning, another of the surgeons and a team of doctors visited. They informed that, as I was now urinating with less bladder retention and had passed a bowel movement earlier that morning, I would be discharged home today. I was apprehensive, but pleased to be able to go home.

Don and my brother arrived at around midday. The spinal nurse visited to explain everything about my recovery at home.

The journey home took around two hours and I was propped up with blankets and pillows in the back of the car. We had to stop frequently as I was told I cannot sit for long periods.

Recovery at home:

At the time of writing (27th June), I am nearly three weeks post op. I have had no sensation return in my right buttock, genital area or anal area, but I am remaining positive for the future. I have also noticed that I have some numbness on my right foot and don't have full control over my toes!

I have a bed in the lounge and, luckily, have use of a downstairs toilet. However, I have not been able to go upstairs yet so am being washed by Don. A lovely friend also visited to wash my hair with a jug (which took a while!).

I had my stitches removed on Monday 17th June and the wound is heeling well. As per instructions from the spinal nurse, I am resting but increasing the amount of walking I do around the house daily. I cannot bend, which is annoying when I drop things!

I have contacted the Cauda Equina Champions Charity and have taken part in their support group. It is good to hear about the stories of others.

The future and the help I need:

I have been informed that I will need specialist spinal rehabilitation from a neuro physiotherapist, who has experience with Cauda Equina Syndrome. This is going to cost around £80 per hour and I have no idea at present how many sessions I will need.

Unfortunately, due to being in a probationary period with my employer, I am only entitled to half pay. Not only does this put added pressure on Don and me to pay for our usual bills, it does not leave any room for the additional costs of rehabilitation and the aids I will need.

I have been informed that I would benefit from walking aids and, potentially, a wheelchair depending on how my rehabilitation goes. It has also been recommended that I get an adjustable bed, a ROHO cushion, a vibration board, a specialised office chair for work and a hot tub for hydrotherapy at home. I may also need aids for washing.

I am not allowed to drive until at least 30th July (if at all), which is when I have a follow up at Kings. I currently own a manual Fiat 500 so I am likely going to have to have a change of vehicle. I will probably require a higher and larger automatic car that is easier to get in and out of!

As you can appreciate, this is all going to be very expensive, but I really want to give my recovery and rehabilitation my best possible shot. Thank you for taking the time to read my story and please know that I am grateful for any donations, as I know money is tight for many right now!