Diagnosed with CES aged 26yrs old, hoping to offer some hope to others that have had CES!

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I hope my story below offers a glimpse of hope to somebody, proof that not all CES sufferers are left with life changing injuries.

Since late 2017, I began experiencing sharp "stabbing" pains in the side and rear of my right leg and lower back, and a numbness/pins and needles in my toes of my right foot.

The pain and symptoms continued to worsen during the first few weeks of Jan 2018.

On Sunday 21st Jan, I woke up to excruciating pain in my right leg and lower back. Unable to sit, stand, walk or lay, I went straight to A&E. They advised that in his opinion I had some form of sciatica. I was sent on my way with pain relief (naproxen), and needed to book an appointment with my GP to arrange an MRI scan to confirm the cause.

Over the course of the next 2 weeks, the pain in my back worsened. I began to lose further sensation and feeling in my right leg and buttocks, my bladder routine/control began to deteriorate and I began struggling to sleep due to the pain.

Over the weekend of the 3/4th Feb, my pain increased further, and I lost next to all sensation in my right leg and bladder. After waking on Monday 5th Feb, I was bent over double in pain.

Again, a&e refused to give me an MRI scan as I wasn't deemed an "emergency", and instead prescribed tramadol and diazepam, and sent me on my way.

The tramadol and diazapem had little to no effect in relieving any of my excruciating pain. After spending the next week unable to sleep, walk, sit, stand, or even shower myself, my symptoms further worsened.

We arranged an emergency appointment on 12th Feb at my GP who immediately recognised the severity of my condition, and arranged an immediate referral to the orthopaedic specialists in A&E.

They confirmed my bladder and bowels were not working sufficiently, and immediately cathiterised me. My bladder was holding 700ml after I'd tried passing urine independently.

My bowels had not passed in 3 days.

The orthopaedic specialist advised that in his opinion, I required an immediate MRI scan, I had severe nerve damage at the bottom of my spine, and in his opinion I had a condition known as Cauda Equina.

He also confirmed my condition should have been investigated weeks earlier, upon one of my 2 previous visits to A&E.

The MRI scan confirmed that day that I had Cauda Equina syndrome.

I was immediately rushed to the spinal specialists at the Leicester Royal by ambulance, and sent down for urgent surgery.

I'm now 6 weeks post op, and the transformation and recovery is incredible. I still have a numbness in part of my right foot, and a minor numbness in my buttocks.

However, I've regained FULL control of my bladder, bowels and sexual function and have next to no pain in my back or legs (other than a weakened body, which is fully expected considering I've had back surgery) but I'm improving weekly!

Having read 95% horror stories, I hope this helps even just 1 person to know that there are those that do recover from CES, with the help and support of family and friends.

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3 Replies

  • Posted

    I on the other hand age 50 was left in compression with ces Iwhen the hospital realize I was tranfered from my hospital be to kings London. I now have a colostomy a ideal conduit wee bag. I have mobility issues. I sued the hospital and they paid out of court. I was 50 had a good job I was going to retire at 55. I have on going medical issues they left my bladder in but that had to be removed as it went septic. I have had 2 major hernia operation I have had my colostomy revision. I have had 10 major operation I have had c5 c6 c7 fusion surgery they found my disc had gone I now have tituiam spacers plates and cages. I have had 33 Mir scans I am waiting for another rivsion on my colostomy my scar up the middle is over a foot long.

    I am still under the consultant at guys for my lower back I am also going to have neroumodulatin implants that break up the pain signals to the brain I have had 2 bad falls we have worked it out I have spent over a year in hospital I have been to so many out patient appointments. I have been told I am the worse case of established causa equine syndrome in this country all these thing because so test of a doctor sent me home even though I had a go letter and on the Monday 3 days later the admitted me and left me until late Tues afternoon before they done a Mir scan. Then when the scans were seen at kings the s**t hit the fan. I have loads of money I would give it all back for my life back. I live in pain it took my life away playing golf going to the gym. I had a great life now I go weeks not going out. Some days I can't get out of bed my pain is terrible.

    So u are one of the very lucky ones but as u get older it will come back and bit u in the arse in one form or another so enjoy your time.

    • Posted

      I can relate to some of your conditions especially the reduction in mobility. I hope your condition improves because if I won euro millions I’d gladly hand it over if I could return to pre Cauda equina. Take care
  • Posted

    I’m delighted to hear your good outcome. I’m not too bad but most seem in a terrible way. I have paralysis down outside of left leg, saddle anesthesia, some bowel   Bladder issues and no sexual function. It really fffs up ones life. I can walk short distances and exercise in a pool. It certainly is a nasty condition.

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