Raymond's Story

Raymond’s Story


 I suffered a serious fall which crushed my L5 vertebrae, both discs above and below and damaged the L4 and S1

vertebrae. Nerve damage is pretty extensive with more or less total loss of all the S roots and partial loss on L4 and L5.

I have almost no muscle power below the knee with loss of sensory in both feet, up the back of both legs and into the

saddle area. My thigh muscles are ok so I have power in my knee joints. 

My injury occurred over 43 years ago when I was 24. Fortunately I was pretty fit and I managed to get walking again

after about 3 weeks, firstly a few steps on crutches moving on to sticks a few weeks later before a couple of faltering

unaided steps. Within 6 months I was back on the golf course walking 9 holes with sticks and a caddy to carry my bag.

At 10 months I played a competition; 18 holes Saturday pm and 36 holes on the Sunday. I gave up sticks even for golf

after a year or two later although I did regularly improvise a golf club as a sort of stick when I fancied. Of course my

walking gait is unusual! Since then I have played golf regularly walking, pulling my own golf bag and trolley and I won

more than my share of competitions against fully able bodied players. About 15 years ago my knees were giving up on

me and I finally took to a golf buggy to try to extend my golf career and I am still golfing today. I have progressively

adopted lower leg orthopaedic braces to help stabilise my ankles. 

Suffice to say it is not easy and I’d rather be without CES. On the other hand I have adjusted the pace of my life, was

fortunate, as a professional engineer to stay in full employment throughout until I retirement a few years ago. 

I have focussed on the positive side on my walking but I am currently very frustrated with my recent application for my

blue badge being turned down by my local council. It seems that I walk too far and do not complain enough about the

pain and discomfort I have learned to put up with over 43 years. 

I do suffer all the unseen consequences of CES; pain and body functions. My bladder is now managed pretty well via

intermittent self-catheterisation – a huge improvement to my life since that started about 7 years ago. Bowell

incontinence is my biggest problem; I wear improvised thin pad protection 24:7 but I rarely get any warning and my

sense of smell is normally my first indication. I am regularly constipated so I can generally hope for a few days respite

after a good evacuation but heaven help me when I get a bit loose! I am pretty adept at disappearing to my car and get

home to clean myself up but that does not help with some of the social side-effects. 

I am numb over buttocks and saddle and down the back of my thighs and knees, sex function is seriously impaired and

my lower legs and feet are mostly numb. Pain comes and goes with sciatica probably the top pain and various pains

around my knees. In my feet and ankles I get intermittent strange sensations – probably pain dulled by the numbness.

My left ankle is the worst joint with the ankle turning over so that, unrestrained by a brace I walk on the outside of my

foot. Unfortunately I find the braces uncomfortable at times so I generally only wear them if I am going to need to go

outside and walk short distances. 

By and large I have always tried to lead a “normal” life. Of course I am getting older and I feel weary at the thought of

walking any distance at all. More recently I suffered a heart attack and the associated medication seems not to be too

user friendly to my intestines! I am perplexed that chronic CES as a condition is not an automatic criteria for a Blue

Badge. I have never sought DLA or other Welfare benefits; If one is in receipt of the Mobility payments of DLA/PIP it is





Cauda Equina Syndrome Sufferers Global Support Group