(NO 1) The Sufferers Responsibility.
Yes, I do mean responsibility! Primarily to yourself, but also to your loving family, who share your suffering with you, to become better educated about your symptoms, conditions, available treatments and aftercare!
I say this, because I don’t want you to experience the same amount of delays, confusion and wasted years that I did!
It took me over 4.5 years of misdiagnosis, mistreatment and refusals before I realized just how much more ‘self research’ and ‘self appraisal’ I needed to undertake before I ‘fully understood’ what was wrong with me, how to manage my condition and how to fix and improve the quality of my life, over the long term!!
I speak out, because the thought of ‘anyone else’ going through the same delays and suffering as me, is simply too intolerable to stay silent!
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During the first 3.5 years of my disabling osteoarthritic illness, like most of us, I did exactly as I was told, by all of the NHS Medics assigned to my care. I took the right drugs at the right time and in the right way! I did my exercises, in the right way and for the prescribed duration! And, I protected my spine in the way I was told!! But, my condition and pain got worse and the number of direct and indirect symptoms and disabilities increased!!!
As a strong believer in the Law of ‘Cause & Effect’ for every outcome or effect in one’s life, there is a specific cause; this 3.5 year negative clinical outcome, did not make sense to me!!
How could 3.5 years of extensive therapies and treatments ‘fail’ so completely??
It was after a ‘very unpleasant’ consultation with an Orthopaedic Surgeon at this time, who ‘blamed me’ for her treatments failure and ‘threatened me’ with a ‘spinal fusion procedure’ if I did not stop asking questions and carry on with her ‘failed’ treatments, that I decided that I ‘desperately needed’ to find out the truth and that I needed to look deeper in the questions that these failed treatments and her behavior posed!
I started to look backwards to the treatments and therapies I had received which I was told would help ease my disc bulge at the L1/2 level. Using ‘online resources’ I found that ‘IF’ I was indeed suffering from the effects the disc bulge at L1/2 level, I ‘should’ have seen ‘some improvements’ using this programe over those 3.5 years, not deterioration!!
So why, was I getting worse?
If the ‘benefits’ of this ‘proven spinal treatment’ did not create an ‘improvement’ in the location of my diagnosed condition, logic would strongly suggest, that there is only 1 possible reason! The target area for treatments were wrong!!!
In other words, the ‘treatments and therapies’ were given to me in the ‘wrong places’ over those 3.5 years, they applied the treatments and therapies and ignored the fact that I was ‘constantly presenting to them’ with a deteriorating condition!! This is a ‘clear clinical contra-indication’ for any treatment plan, which should have ‘automatically raised’ a red flag and ‘triggered a reappraisal’ of my symptoms!!!
This did not happen!!!
The Lady was not for turning!!
Her diagnosis?
My failure to get better, experience less pain, gain more mobility and to keep a job, was ‘purely due’ to my negative thoughts, thinking of pain the wrong way and constantly questioning her ‘failed’ treatments and therapies!!!
YES, REALLY!!! 20 years of medical training & experience, and the best diagnosis of my condition that she could come up with, was that it was due to my ‘inability to ignore the truth’ about my ‘true state’ of my pains and disabilities!!!
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As I have frequently stated on Healthy Pages, back pain forum, DO YOUR RESEARCH PEOPLE!!!
This is because, in my experience, and in that of my forum buddies, when it comes to back/spinal pain information, the quantity, quality and accuracy of Spinal Surgeon’s information given to patients at the time of consultation, is at the very best LIMITED, VAGUE, CONTRADICTORY and CONFUSING! At it’s worst, NON EXISTENT!!!
I beg of you, please empower yourselves, utilize ‘the world wide web’ to find the answers for your self!
As I did, type in your symptoms, for example: pain in base of spine and leg weakness ‘or’ severe neck pain and headache at base of skull, then go through the WEB’s offering of ‘possible conditions’ such as ‘sciatica’ and ‘cervicogenic head pain’ and carefully compare the pains and disabilities that ‘you’ are experiencing, with the description of the symptoms associated with and typical of these possibilities!
If your symptoms don’t match, put these possible conditions to one side (but do not get rid of them) and redefine your symptoms, start again and through a continuous and careful process of elimination, you ‘will’ (relatively quickly) find the root location and causes of your suffering!!!! The answers are out there!!!!!
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Do not be put off by GP’s and Surgeons, when they tell you ‘not to use the internet’ to research your condition and symptoms, because there is ‘dangerous and misleading information’ on there! As a Member of Healthy Pages, you will already have experienced the openness, helpfulness and support of your fellow members on the back pain thread, fellow sufferers, who (unlike the Doctors and Therapists) can fully empathize and understand your symptoms, your suffering and offer you an incite in to the ‘real life’ quality, availability and effectiveness of therapies, treatments and aftercare, that you will never receive from Medics.
Sure, care has to be taken when online to keep safe and to be able to verify the accuracy of medical information by cross referencing, but this resource is never the less, invaluable in finding independent, factual and peer reviewed clinical evidence to help you understand your condition and options.
You (by any means) HAVE THE RIGHT TO KNOW!!!
I was told, not to use the internet, many times over those 4.5 years, only to find that when I ‘took a sneaky peak’ at the Doctor’s computer during my consultations, I found that ‘he too’ was using ‘the same online resources’ as I was using to get answers to my questions!!
On another occasion, a Consultant who had told me not to use the internet because of its danger, recommended that I needed to go on a ‘pain management course’ to learn ‘how to think’ about pain differently! So I asked him for leaflets or other information regarding the course? He did not have any!
I asked him for ‘his description’ of the course? He could not describe its content.
So asked him directly, where can ‘I’ find treatment and location information, regarding your recommended course? He said (without a glimpse on irony)
USE THE INTERNET!!!!!!
DON’T LISTEN TO THEM PEOPLE, do your own independent research on symptoms, conditions, treatments and after care, so that when you consult with your GP and Surgeons, you will fully understand your options and YOUR RIGHTS!
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Here (below) are some of the helpful web sites I have used over the years. Some are forums like Healthy Pages, some patient information sites and others are more formal Doctor & NHS based resources. There are many more out there to use, so take your time, keep a record of what sites you found informative and don’t forget to print off whatever you can for future reference, believe me, you will ‘kick yourself’ if you ‘loose’ the very information you need later!! LOL !!
In spite of the Medics inevitable protestations, it does not matter a ‘jot’ if the resources you use for research are British, American, European or Asian! The research findings, tests, therapies, and treatments are more often than not, very similar in every way. Bare in mind, that of the top 10 most experienced Minimally Invasive, Endoscopic Spinal Surgeons in the world are American, Croatian and Korean. There is only one British Spinal Surgeon that is true great and he sits right at the very top of the top 10 list, but more about him in future posts!
A spine is a spine wherever you live, a sciatic compression will cripple you in the same way whether you are British or French, your suffering will be just as real if you are Chinese or Russian and safe & effective surgical treatment and aftercare options are just as hard to come by wherever you live!!
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A final word of caution, don’t be fooled by the ‘TV Doctors’ who tell us how open and progressive your GP and Consultant ‘will be’ when dealing with your urgent spinal pain needs! As I, and many of my forum buddies will testify, that when it comes to ‘the world of the chronic back pain sufferer’ you will have to fight for every prompt consultation, every non-invasive therapy, every urgent test, every appropriate scan, every scrap of clinical information and every invasive treatment and therapy!
I am not saying there aren't good and caring Medics out there, but in my humble yet experienced opinion, when it comes to the world of spinal care, those who go the extra mile and go against established protocols, are few and far between!
So prepare yourself, and your family, FOR THE FIGHT, TO REGAIN YOUR LIFE!!
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Below are some (but by no means all) of the varied and informative internet sites I have used over the years, in them, you will find information that you will never get from your GP or Surgeon! Whilst researching in this way ‘will enable you’ to more fully understand and speak about your condition, symptoms and results, it will not guarantee that you will receive the appropriate or best NHS funded tests, scans, therapies or procedures, but it will at least offer you the knowledge to ‘avoid’ often unnecessary, frequently used and highly destructive open ‘gold standard’ spinal decompression surgical operations!
GOOD RESERCHING, TO ALL OF OUR FELLOW SUFFERERS!!
[url]Lower Back Pain | Causes, Treatments, Exercises, Back Pain Relief[/url]
[url]Herniated Disc: Articles and Videos on Symptoms, Causes, Treatment[/url]
[url]About us | Dr Foster Intelligence[/url]
[url]chronic back pain - PubMed - NCBI[/url]
[url]Patient Resources | Society for Minimally Invasive Spine Surgery[/url]
[url]National Institute for Health and Care Excellence[/url]
[url]NHS Direct - Home[/url]
[url]Spinal stenosis: MedlinePlus Medical Encyclopedia[/url]
[url]Lower Back Pain in Adults, Back Pain Causes, Lower Back Pain Exercises | Patient.co.uk[/url]
[url]Back pain - NHS Choices[/url]
[url]Laser Spine Surgery | The Bonati Procedures | The Bonati Spine Institute[/url]
[url]Cleveland Clinic Center for Spine[/url]
[url]Spinal Surgery News - Latest Products & News[/url]
[url]Minimally invasive spine surgery[/url]
[url]Orthopaedics| South Tees Hospitals NHS Foundation Trust[/url]
[url]Spinal surgical unit | Royal National Orthopaedic Hospital NHS Trust[/url]
[DLMURL] http://www.ombudsman.org.uk/_ [/DLMURL]
[url]Frenchay and Southmead Hospitals | North Bristol NHS Trust[/url]