Raising Awareness Of Rare Life-Changing Spinal Condition

A Chelmsford head teacher who was forced to take early retirement after being diagnosed with a rare spinal condition has spoken of the challenges she faces as she backs an upcoming awareness campaign.

Mandy Short developed severe back pain in February 2016.  She went to see an osteopath who recognised signs of left-sided weakness, reduced reflexes and numbness, and recommended she needed an MRI scan “as soon as possible.”

Mandy managed to see a GP two days later and was prescribed pain medication.  She subsequently found out that she had been referred for an MRI scan for seven weeks later.

The following day, Mandy’s condition was worsening.  Her colleague took her to hospital, where she underwent a series of scans and was diagnosed with cauda equina syndrome, a condition where the nerves in the lower back become severely compressed.

Mandy underwent decompression surgery, but was left with life-changing disabilities including pain and numbness in her left leg, and ongoing problems with her bladder and bowel functions.

Following her diagnosis, Mandy, 57, instructed specialist medical negligence lawyers at Irwin Mitchell to investigate the care she received under Dr Summer Alsaffar at Little Waltham Surgery.  The legal experts helped Mandy access the specialist support and rehabilitation she required to help rebuild her life.

Irwin Mitchell is part of a legal panel established by the Cauda Equina Syndrome Association (CESA) with the aim of improving access to advice and support for sufferers of the condition.  With the charity’s awareness day approaching on 1 October, Mandy, 57, is now joining with her lawyers to help increase knowledge of the condition and the effects it can have.

Expert Opinion

“It’s been more than four years since Mandy was diagnosed with cauda equina syndrome and she still continues to suffer the devastating effects of the condition every day.

As a result, she has had to take ill-health retirement and leave the job she loved as a head teacher.

Early diagnosis and treatment is key when it comes to cauda equina syndrome, and while we cannot change what Mandy has gone through, it is important that lessons are learned to improve patient care.

The Cauda Equina Syndrome Association’s awareness day provides the perfect opportunity for Mandy to share her story and raise awareness of the condition which is still widely unknown about.”
Richard Kayser - Partner

Mandy began experiencing niggling lower back pain in late December 2015.  On 28 February 2016, she felt a tearing sensation in her left buttock, which led to intense pain and numbness. 

She was unable to get an appointment at her local GP practice and decided to contact a private osteopath.  He examined her and advised that she had evidence of left-sided weakness, reduced reflexes and numbness.  Mandy was informed that she needed an MRI scan as soon as possible and her osteopath provided a letter for her GP surgery. This was handed by Mandy to the GP receptionist on the same day where she also requested an urgent appointment. 

Mandy was unable to get an appointment with a doctor that day.  By 1 March, she said she was in “excruciating pain” and managed to get an appointment with Dr Alsaffar who carried out an examination.

Mandy said she mentioned the letter from the osteopath, which Dr Alsaffar said she had not seen yet.  She prescribed Mandy pain medication and advised her to return in six weeks if the pain continued.

During the appointment, Mandy said she was not informed whether she was being referred for an MRI scan.  She later received an appointment for seven weeks after the date she underwent her surgery.

On 2 March, Mandy’s condition was worsening.  One of her work colleagues drove her to hospital, where she was assessed and examined.

She underwent scans and was rushed into surgery for a prolapsed disc.  She was given an emergency transfer to another hospital where she underwent decompression surgery and was diagnosed with a cauda equina injury.  She was discharged on 6 March.

Following her diagnosis, Mandy still suffers from lower back pain, as well as pain and numbness down her left leg and into her foot.  The issues with her bowel and bladder functions continue to affect her on a daily basis.  As a result, she had to take early retirement from her job as a head teacher at St Michael’s Primary School in Chelmsford.  She was also a qualified Ofsted inspector at the time.

Mandy lives with her husband of 38 years, Derek, and their two dogs, one of which is a therapy dog to help with her anxiety.  The couple have three children and seven grandchildren.

She said: “My life has changed dramatically in the last four and a half years.  I had never heard of cauda equina syndrome before my diagnosis, and it has been incredibly difficult to come to terms with what I have been through.

“Prior to the surgery, I was at a real high point in my career and it was absolutely devastating to have to give all that up, but there was no way I could continue to work with the problems I have with my bowels and bladder.  Some days, I even struggle to leave the house.

“In an attempt to help ease my distress, in 2018 I bought my therapy dog Delilah.  She really helps me as she provides me with something to focus on other than myself.

“I have found it very difficult to come to terms with the fact I now have a disability and I worry about what the future may bring for me.  It is also upsetting to hear that it is likely my condition wouldn’t have been as bad if I had been referred for surgery earlier.  But, while I can’t change what has happened to me, I am so grateful for the support I have had from my family – I wouldn’t have got through the past few years without them.

“In the meantime, I hope that by sharing my story and raising awareness of this condition, I might be able to stop this from happening to anyone else.”

According to the CESA, more than 1,000 cases of cauda equina syndrome are recorded in UK spinal centres every year. The charity estimates there are three cases for each officially recorded, suggesting thousands are living with the condition who may be entitled to help.  Its awareness day on 1 October is being held to raise awareness of the symptoms of cauda equine syndrome and the support available.

‘Red flags’ include lower back pain, sciatica and leg weakness as well as bladder, bowel and sexual dysfunction. Anyone with symptoms should seek medical attention, particularly if pain is accompanied by tingling or numbness around the bottom and started after an accident.

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