Disability, Education, health, Lifestyle, mental health, NHS, Politics, social media

Cauda Equina Syndrome, the injury NHS doctors fear yet the public know nothing about it.

By Simon Sansome

I can pretty much guarantee that 99% of the population in the UK have no idea what Caudia Equina syndrome or CES is?  Yet two people in the UK are diagnosed with it every day and it is costing the NHS hundreds of millions of pounds a year.

So technically CES is spinal damage. It is compression of the nerves going down the spine causing paralysis in various parts of the lower body.

For me, the side-effects vary considerably and since 2014 I have had the following issues and they have not stopped and  only deteriorated. Firstly the complete loss of the use of my lower half of my body. The main one for me however is complete loss of sexual function.  I’m not going to lie this is a biggie. Next, staggering shooting pains anywhere in the lower half of the body. There is a Facebook page called Caudia Equina Syndrome UK and I have been following this for a few months.  There are people showing videos of muscle spasms, in terrible pain, screaming and shouting and I can completely relate to this because the shooting pains can occur anywhere on the lower half.  It could be the toes, it could be in the feet, it could be in the bum, it could be on the back of the leg and the shooting pains can last for couple hours up to couple of days. There is no controlling it, no treatment for it so I am told by my spinal specialist at the Sheffield Spinal Unit.

The staggering amount of pain on a regular basis gets more interesting when you get shooting pains in the testicles and that believe me that is not a pleasant day. In fact it can make a grown man cry for hours and hours and hours on end trust me I know, I’ve been there.

The symptoms unfortunately get a lot worse as well in my case. I have dropped right  foot which means I have no sensation at all in my right foot  and I have about 20% of sensation in my left foot. My leg muscle mass is completely wasted away as I am incapable of walking more than 10 feet without assistance. I am now wheelchair dependent and have been pretty much since 2014.

Carrying on with the symptoms I have to pee into a urinebottle for the rest of my life using catheters as my bladder and bowel functions are completely shot.  Most of the time going out I have to have someone with me in case I get into difficulty and the worst thing is I am only nearly 38 now and I have to wear incontinent pads which cause horrible nappy rashes.

The major issue is with CaudEquina Syndrome is it can apparently  be easily missed by the NHS. If you do not get emergency decompression surgery within 24 hours of it happening it can cause permanent disability.

All the above and all the side-effects that  I have mentioned are just a physical aspects of CES. There has been no talk yet of the mental health aspect. You cannot get out by yourself,  you can be in a staggering amount of pain on a regular basis and  screaming to the rafters because of it,  bowel and bladder loss, erectile dysfunction, not being able to have kids, being unable to work, having to pay for adaptations and move home; the list goes on and on and on and yet very little is being done about CES.

I am calling for the NHS and the government to start and invest more money into Cauda Equina Syndrome. There are thousands of people across the UK who have this condition and who will be living with this condition for the rest of their lives and not only is there no treatment for it but a lot of these people are in a significant amount of pain on a daily basis.  More research is needed, more money is needed. It would be for the financial interest of the NHS to research CES in more detail and try and find a solution or treatment for this condition that causes misery to thousands of people across the UK.

2 thoughts on “Cauda Equina Syndrome, the injury NHS doctors fear yet the public know nothing about it.”

  1. Depressing but good read. The NHS is negligent in its duty of care. Treatment is a dirty word, relaced by ‘management’. I know you wont want my pity but you have it regardless. I understand many aspects of your condition personally, and its very hard. NHS patients deserve more. We pay into the system for years. Its very unfair. I hope you have as good a day as possible. Thanks for the article.


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