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Cauda Equina Syndrome Sufferers Global
Support Group - New Zealand   

I called my work Genesis as it is the beginning of a new era in my life with Cauda Equina Syndrome  (CES)

and it’s after effects. The 55, well that was the year I was born.  My name is Dale, married with

wonderful children and granddaughter who I am immensely proud of. My wife has been my rock and a wonderful

support, and has suffered along with me in all problems that go with Cauda Equina Syndrome. I could not ask for a

better caregiver. 

 Cauda Equina Syndrome is hell on Earth having to spend so much time in hospital and 

countless ambulance rides. Cauda Equina Syndrome has caused me to have Bowel and Bladder issues as well

as Erectile Dysfunction which are the after effects of this disorder.  CES has caused me a lot of Stress, Anxiety,

Social Anxiety, Panic Attacks and Depression thrown in for good measure.  

Before I go any further let me state, CAUDA EQUINA SYNDROME is a hideous debilitating and  can be a life

threatening  disorder. It can leave people with Tetraplegia or Paraplegia so it not only  ruins the life of

sufferers,  but those  around him/her. The disorder if  you have all debilitating symptoms, not knowing when

you defecate yourself, have no sexual function, have tochange a urinary bag every day as you need to have

either a Urethal Catheter or a Super Public Catheter and these have to be changed often.

You suffer severe spasms, electric shocks down your back and legs as if being hit by a cattle prod. In addition

as well as having special liners on your bed to protect your mattress. To go out in public causes you

significant social anxiety and panic attacks, leading to depression, suicidal thoughts as well as afraid to go out

anywhere. It is hard for your family to really understand the mindset of a CES sufferer, thus I 

hope the information and detail here helps a little.  The items on this website are only a fraction of the what the

Book/Manual contains.

So please read on and understand just what the disorder entails. I also suffer from Parkinson Disease and

C.O.P.D. (Chronic Obstructive Pulmonary Disease).  I have a Psychologist Degree in Forensics and

Criminology, Post Grad Degree in Crime Scene Analysis, Teaching Degree as well as a Degree

in Health Sciences majoring in Mental Health for youth and adolescents as well as the Post Graduate Degree

Human Behavour and the study of Nature v's Nurture, Flight or Fight as well as the Nervous System. 

I studied Hypnosis and NLP and am Qualified Therapist in both. I am an avid reader and a published author.

I decided to do a survey on Cauda Equina Syndrome as most of the information on the internet was

really repetitive covering what it is, how you get it, the outcomes and the diagnosis

and treatments.  I made several enquiries with professional medical people and most firstly had

never heard of Cauda Equina Syndrome, let alone know anything about it. It was also evident that there was

not a lot of information for caregivers etc. thus the survey and book.

                                   I Needed This Doctor's Help At Times

                                             

              

The survey we conducted was unbelievably successful. We originally was only going to send 1,500 but

the interst from different groups was so overwelming, we ended up with just under 

15,000 emailed and posted surveys, with help of Orthopaedics, Neurologist and Doctors who knew about

Cauda Equina Syndrome and in the finish because it had been passed to other organisations and sufferes

of CES globally we ended up with a return of 13,187, (approx 87%].  which was a mammoth job, for the auditor

to correlate everything. 

The provided information within this site are pieces of information from the Book/Manual about CES,

and  is the result of the collected general points of view of Medical Experts

 (in orthopaedic spinal surgery), Disability Professionals, PatientSupport Groups/Representatives. 

It also included World Wide Medical Associations, Renowned Research Clinics, Surveys and 

other forms of information that was available to us and from their expertise and experience, 

along with a scientific literature review survey was formed and the information is within the pages

that follow. 

 It describes the difficulties of the population affected by the Cauda Equina Syndrome

disorder, receiving optimal standard care and management,

(specific and/or symptomatic management, prevention and prophylaxis, devices and aids, care and support). 

This general information may not apply to specific cases, but where possible we have linked it to CAUDA EQUINA SYNDROME, and its follow-on effects.                

RARE DISORDERS ARE JUST LIKE RARE PAINTINGS,

        "MONA LISA"

THERE IS ONLY ONE OF HER AND ONE

OF YOU SO DON'T BLOW OFF THAT BACK PAIN,

 AS JUST A TWINGE - 

When in Doubt, Get It Checked Out !!!    

Some difficulties that are not listed here can be 

reported or can occur with a different temporality

 or specific case.  

Some rare diseases and disorders are  currently 

described with their functional consequences, 

irelation to CAUDA EQUINA SYNDROME

 data collection is still currently ongoing so, 

follow-up 2nd Edition will be upcoming in 2025. 

About the book/Manual hopefully along with more data and hopefully some form of  a positive outlook. 

The information is restricted to the consequences of the Syndrome/Disorder, and its management on 

functioning and daily life. Clinical aspects (including fatigue, pain,the impact the disorder of the patient’s 

psychological state and daily life as well as the consequences on family) are described throughout the

document’s Sections and Chapters.  The Book/Manual is to provide rare disorder information on

CAUDA EQUINA SYNDROME  to healthcare professionals, social care providers, patients and their 

relatives, or anyone with an interest in this hideous disorder, in order to contribute in improving the

diagnosis, management and care of sufferer. We also hope to show that there is a direct

correlation between Physical Disability and Mental Disability, and vice versa, as Insurance Companies

and Workers Compensation Groups cannot comprehend this. This is especially noticed in Cauda Equina

Syndrome patients. This information is not intended to replace an individualised professional evaluation of the

difficulties and needs of each person. 

This Web Site  Cauda Equina Syndrome Sufferers Global Support Group – New Zealand 

 will only have snippets of information as the Book/Manual/Journal is over 500 pages long.    

                                                                                                                               

This work is dedicated to all Cauda Equina Syndrome Sufferers Globally.  I hope that you

may and something within the following pages to help you and your family understand

what Cauda Equina Syndrome is all about and that it is a Rare Disorders

 

D. R. R. McGregor – 2017

©

The material within this work other than the Author’s that required permission has been granted

by permission from the said Authors, Doctors, Hospitals, Medical Associations and or Publishers. 

All rights are reserved. It is illegal to make copies of any part, section or chapter including those of the Author

or Publisher or those so named within, who jointly within the Standards of Australia, UK, USA, and other

Countries orTerritories which have copyright laws. To use in whole or in part, without written permission from

either the Author or Publisher is a breach of the Author’s or Publisher’s rights, including those references

and acknowledgments of ownership declared in the relevant sections. Permission is required in writing by

all parties for the purpose of using the whole or part thereof of this work is Infringing upon the Copyright

Act 1994(NZ), a person or persons including businesses who infringes upon this copyright may be liable to a

fine of up to $150,000 or to  a term of imprisonment 5 (five) years or both. 

=====================================================================================================

  PLEASE NOTE:

The Author/Publisher, cannot be held responsible for harmful, truncated or erroneous use of any

information found in the following sections. This book/manual is not a recommendation to use as a

medical diagnosis. Please contact your own  doctor if you are in any doubt of pain in your back.

If you are in doubt about anything please use the Enquiry Form below.

This sight as the logo below shows we are here to be friends, help, supply as much information as

we possibly can for the sufferers of Cauda Equina Syndrome.

      

Make an Enquiry

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Cauda Equina Syndrome Sufferers Global Support Group


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