Orlando

My story

On a Sunday in 2001 at the age of 50, I had a fall from a ladder and destroyed L3 vertebra. I was incontinent at the accident scene. I was taken by Ambulance to hospital. In casualty I asked if I was going to be incontinent, and was answered abruptly 'Yes you are now'. I was fitted with an indwelling catheter which I did not feel being inserted. I had lost sensation in the back of my legs, my bottom area, and my feet. I now believe my medical records will confirm that I was displaying all the Red Flag Symptoms suggesting Cauda Equina Syndrome. 

During the next 24 hrs. I was examined further and continued receiving pain relief. 

The day after admission, it was noted in my records that an urgent MRI was required, was carried out and confirmed CES. I was then advised on the Tuesday that surgery was necessary to stabilise the fracture which was planned for Friday! I was fitted with a fabricated stainless steel replacement vertebra (front part) which was secured with 2 x kaneda bars and six screws. This was a 5 hour operation carried out from the front, and requiring a 450mm incision. 

Monday 72 hrs. after surgery I was assisted to get out of bed and to stand for a few seconds, which resulted in total bowel clearance. 

This was a very distressing experience made worse by the fact that I was unable to stand unassisted due to an intense feeling that I was falling forward.  After 10 days physiotherapy I managed to re-learn to walk unassisted. 

I had to overcome faulty nerve messages. I was now suffering from freezing Cold Feet sensation. I can only walk on my heels due to total loss of useful strength in my feet from ankle forward. 3 weeks from the fall I was sent home on a stretcher and then asked to walk through my own front door. 

By now I had been advised that I was probably impotent and that I would be introduced to a continence nurse to be trained how to look after my neurogenic bladder and useless sphincter. This happened and after a few weeks I was self catheterising my bladder. My bowels were working by daily enema capsule, administered by my late wife. 

After a further 11 months I learnt to use a breathing routine to empty my bowels. These problems have not improved to the present day. I was discharged from Orthopaedics 18 months later in 2003. 

I have been self catheterising now for 12 years and will have to continue for the rest of my life. The bowel routine is generally daily, but at differing times and takes anything from 1-45 mins. I have frequent (more than once a month) accidents with both bladder and bowel, as I have no sensation in either department. 

In 2007 I had an accident on a motorcycle, which was not my fault and resulted in severe damage to a shoulder. This incident led to lengthy legal proceedings by way of a damages claim. In early 2009 I had to attend a full private medical examination in Harley Street which demanded access to my full medical records. When I saw the report, I saw for the first time that I was suffering from Cauda Equina Syndrome. 

This syndrome was mentioned several times in entries dated 2001. I had never heard of CES until 2009.

To this present day NOBODY in the NHS has directly advised me verbally or on paper that I am suffering from Cauda Equina Syndrome. Until seeing the report in 2009 I was under the mistaken impression that the problems I have were all as a result of the spinal injury and surgery. I regarded them as a set of unlinked problems. Cauda Equina Syndrome includes all these problems under one name. 

After reading several case histories on the internet and a Newspaper article, I now believe I may not have been told the full story as I feel it is near certain that the 4 day delay before surgery on the 5th day is the reason that I still have CES and I have no chance of it going away. 

I have read up on CES and all sources generally agree that an urgent MRI scan, followed by decompression is essential within 48 hours if there is going to be any possibility of recovery.

Less than 48hrs = less problems and quicker recovery from them.

More than 48 hrs = more problems longer recovery, may be permanent. 

I am now understandably infuriated that I may be the unfortunate recipient of bad medical procedure. I have taken legal action to discover if there may be some form of medical negligence involved in my permanent condition. 

I say permanent because as far as I know the only way I could be rectified is by stem cell replacement therapy, which is unlikely to happen in my lifetime. I am thankful for what I have and what I can do, but the restrictions I have can get very depressing. 

The above was written some years ago, and I have removed exact dates and wish to communicate as ‘Orlando’, as I am still in deep legal action:- 3.5 years of proceedings, resulting in Zero, following case being terminated in strange circumstances in less than 24hrs due to NHS activity. 

Possibly about to start again with a different solicitor 

Some facts....

CES is not as rare as stated.

Knowledge that sufferers, are suffering from CES is rare.

NHS does not advise people they have CES.

NHS still have never told me directly that I have CES.

Jobcentre Plus do not accept CES as a disability.

CES means to me, depression, anger, fear, frustration, inadequacy, loneliness.

CES is soul destroying and misunderstood by everybody except sufferers. 

No this is not cheery stuff........It’s the truth!