Andrew's CES Story

Andrew’s CES Story

Andrew shares how being given the correct CES red flag information leaflet ‘saved his ‘life’ after he developed symptoms of what he thought was sciatica.

“Hello fellow CES Champions,

I am 62 years old and have led an active life to stay as healthy and as fit as possible, so that I can continue to do everything I want to do in to my later years. I came to Scotland just over 40 years ago and developed a passion for mountaineering, rock and ice climbing.

I retired from a senior position in the Oil and Gas Industry at the age of 55 and have pursued postgraduate studies since my retirement and exercise as much as I can. Before my medical emergency I was walking 6 – 10 miles a day, and / or swimming a kilometre on a regular basis.

Then in late May of this year, I developed sciatica in my right leg which got progressively worse. I was prescribed strong painkillers (amitriptyline and gabapentin), but these drugs did nothing to ease the increasing level of pain that I had.

Over the weekend of the 8th-9th June my symptoms got progressively worse, I was starting to develop sciatic in my left leg too and had periods of weakness in both legs. The most painful part was first thing in the morning, when I woke up, I did not want to move as the pain would kick in immediately.

On Monday 10th June I had an emergency appointment at my Health Centre / Surgery. I had a consultation with the Physician Associate based there, who after I explained that I had sciatica in both legs, prescribed to me more painkillers and gave me a very important sheet of information, giving specific information about Cauda Equina Syndrome (CES), listing warning signs, and instructions as to what to do if key symptoms became evident.

Aside: At this point I had never heard of CES, nor did I have any knowledge of how dangerous bilateral sciatica (sciatica in both legs) could be!      

Early in the morning of Tuesday 11th June, around 1.30 am, I was awake and in agony. The pain across my back and shooting pains down both legs were approaching the point of being unbearable.

I realized that I had started to have some of the symptoms outlined on the CES Important Information sheet. My wife Margaret called the emergency services, as soon as she mentioned to the clinician by phone that I was exhibiting symptoms of CES, they despatched an ambulance immediately. I was taken to A&E at the Victoria Hospital in Kirkcaldy at 4.00 am.

I was seen by the A&E Doctor around 9.00am and went to have a MRI Scan at 11.00 am. It was at this point that I was diagnosed with CES. As I was having difficulty urinating, I had a bladder scan…the A&E staff immediately had a catheter put in in order my bladder would empty as it was full.

A transfer was arranged for me to be taken as an emergency case to the Neurology Unit in the Royal Infirmary Edinburgh, it had taken some hours to arrange this transfer, but I was taken just before 4.00pm by ambulance under a siren and blue lights to Neurology Unit in Edinburgh…given that it was the rush hour, this trip would take a 1 ½ hours by car…the ambulance did it in 30 minutes.

The medical team in the Neurology Unit were waiting for me and I went through a full pre surgery assessment and tests. I was taken into surgery at 9.00pm, on the evening of Tuesday 11th June. The operation took around 4 hours where I had a laminectomy and discectomy between L4 and L5 vertebra of my spine.

My immediate recovery was hampered by a lung infection / pleurisy, kidney damage, blood chemistry issues and arterial fibrillation. I was placed in the High Dependency Unit. I was in the HDU for about 4 days before being told I was ‘Ward Fit’.

I spent 11 days in Hospital, I had to learn how to walk again, and regain my confidence. After the surgery I was afraid to sit up, never mind stand and the thoughts of the pain coming back were horrendous.

Aside: They had me on morphine, it did not touch the pain…so they then put me on oxycodone which took the edge of the pain. Before my surgery the consultant surgeon told me everything that could go wrong, as they needed to as part of my consent process for surgery. I was told about varying degree of paralysis, incontinence (bladder and bowel) and that I should be prepared to have a catheter for the rest of my life. Thankfully none of this came to pass.

The medical team were very pleased with my surgery, as am I! 😊I am now week 6 into my recovery which I have been told will take between 3 – 4 months.

Other than slight numbness in my right thigh, some in my left and two toes of my left foot I feel well. I am stiff in the morning, but after 40 minutes or so of exercising, walking and sitting it eases off. I always listen to my body, as it tells me when I have done too much, and I have some difficulty sleeping at times.

But, given the alternatives with CES, I am very happy to be where I am at. I was very lucky to have the right people at the right time over the 10th – 11th June around me.

Most importantly of all, being give the CES Important Information Leaflet on 10th June saved me from a worse fate.I consider myself very lucky and a success story for the Cauda Equina Champions Charity.

The work that the Charity does in raising awareness is invaluable. I wish to support the Charity in any way I can, maybe even becoming an advocate for the Charity here in Scotland.

Thank you for reading my story,

Andrew”