Hello again to Old Fiends and Hiya to all Newbies!
I have been away for while and not posted recently, due to serious deterioration in my illness and more lately, completion of my research of UK spinal services, and my aim to support the improvements and changes within the NHS spinal services system. I hope to support the move away from ‘standard’ NHS destructive ‘open back’ procedures such as Microdisectomy, Laminectomy and Fusion.
I started my efforts in March 2007, after I was ‘misdiagnosed and mistreated’ for the 3 years prior, my symptoms & condition became worse as a direct result of the delays and mistreatment. Between March & October 2007, and through a process of elimination, I had researched my own symptoms, using Doctor’s medical web sites (like Dr. Fosters, and PubMed) and correctly diagnosed my ‘true’ condition in those few months. Thanks to the web, I was even able to ‘source and privately procure’ 2 MRI scans, an X-ray scan and 3 Consultants reports, and was able to prove to 2 Senior Spinal Consultant Surgeons, that my diagnosis was indeed correct!
I was still refused any surgical resolution by the NHS!
This was because, I was told, I was ‘too fit & healthy’ for my age and I would be ‘no better’ and possibly ‘worse off’ at the post-operation stage!! Because the standard NHS ‘open back’ decompression procedure was ‘too destructive’ for healthy bodies!! Queue alarms bells!!
I then researched some more, this time for alternative and available ‘minimally destructive’ surgical procedures, through online resources such as Spine Universe, Spine World and others, and discovered that a ‘far less destructive’ and ‘far more successful’ procedure had been available in America for 25 years, and in the UK for 18 years!! But not on the NHS!!
Endoscopic and Laser, Minimally Invasive Spinal Surgery (MISS) is the least invasive, fastest and safest surgical spinal procedure on the planet, but ‘resistance’ by the vast majority of established British Surgeons to this cutting edge ‘key hole’ operation being allowed into and being freely available at NHS spinal units, is very strong, if not, absolute!!
A word of caution though, please don’t let yourselves be confused or hoodwinked by any Surgeon working in the NHS or privately who claim to perform Minimally Invasive Spinal Surgery (MISS), It is common practice amongst them to ascribe ‘any’ spinal surgical procedure as MISS, as long as it can be proved to be ‘less invasive’ then the established and highly destructive ‘open back’ procedures, that have not changed since around 1905.
This has proven to be very easy, pretty much everything is better than that!!!
To be fair, there ‘are’ 3 or 4 UK NHS Spinal Surgeons’ who are presently moving into the field of True Endoscopic MISS procedures, but they only work on single and simply levels & clear targets. However, thee most experienced of these ‘newer’ MISS Surgeons, has only performed 50 procedures so far!
In comparison, Mr. Martin Knight, of the Spinal Foundation, has performed thousands complex decompression procedures in those 18 years! In America, where new MISS clinics have increased in number by 200% in the last 5 years there are ‘teams’ of ‘all MISS’ Surgeons, who have carried out 10’s of thousands of MISS operations!! So you see just how much the NHS’s Endoscopic Spine Surgeons, lack in relatable experience.
Bear in mind, that the accurate description of MISS procedures has been ‘corrupted’ almost to the point of ‘meaninglessness’ by many NHS & Private Surgeons, who describe ‘any procedure’ that is less destructive than the 1900’s derived ‘standard open back procedures’ as Minimally Invasive. This has significantly muddied the waters of diagnostics, so much so, that patients ‘rarely fully understand’ the implications of procedures that they are to undergo and as we all too often see on HP, sometimes ‘even after’ back pain sufferers have undergone the operations!!
If the proposed procedure:
Has a working incision length of more than ‘one half of an inch: it is not true MISS
Includes a Laminectomy as part of the procedure: ------------------------
Requires the use of retractors or other spreading devices: ------------------------
Requires post-op bed rest and days or weeks of hospitalisation: ------------------------
If you require post-op drips of saline, blood and/or pain relief drugs: ------------------------
If you require post-op drainage pipes and collection bottles: -------------------------
If microscopes are required to look into the spine from outside: It is not true MISS!!
Barring complications of course, (which far less in MISS) if you face ‘all or any’ of these above, you are not getting true MISS treatment!!! No matter what the Surgeon tells you, and some will tell you all sorts of rubbish to cover the terrifying truth about the destructive nature of the open procedures and it’s collateral damage to surrounding tissue!!
I have tried to get GP’s, P.C.T.’s, NHS Trusts, Spinal Units, Consultants Surgeons, Politicians, Governments, Health Service Ombudsmen and a Senior (UK) Health Department Minister to ‘accept the need’ for drastic and urgent Improvements by utilising the availability of established MISS procedures, better diagnostics and better post operation recovery care.
I can tell you now friends, without fear of contradiction, none of these people or bodies are interested in improving our services!! They have showed themselves to be utterly disinterested in rocking gravy boat!! They don’t want to help the sufferers!! Not even the Members of Parliament who have gone on record, stating their support for such changes!!
All the power, when it comes to what treatment you have, where you have it and even ‘if’ you have it, lays in the hands of the Spinal / Neuro / Ortho Surgeon, totally and completely!!!
We, the sufferers, have no choice and our fate is taken from our hands, by individuals with vested interests and little empathy for us chronic back pain sufferers!!
Please don’t be fooled by the glossy NHS pamphlets and online self help web resources telling us how to look after backs and how to make them better, these are aimed solely at the minor muscle sprains and early onset pains and disabilities of the new back pain sufferer!
Long term chronic and severely disabled back pain sufferers, are on their own!! I know, I’m one of you!!!
There are no fast, safe, cutting edge or effective spinal surgical treatments available within the NHS or by the NHS Spinal Surgeons who work in the private sector. Don’t get me wrong, if you have the money to pay for it, new procedures are available such as IDET, minimal access fusion and the Lego brick one, but whilst these are better than the standard, they are all still ‘light years’ away from the principles, positive outcomes and real time improvements of truly MISS Endoscopic Laser procedures!
It has been great to see many more ‘positive’ outcome stories of late on HP, and I readily accept that there are caring, professional and highly skilled NHS Surgeons working in the field of Spinal Service, but before we all get carried away, they are in the minority and I strongly object to the principle that NHS treatment is based on a ‘lucky dip’ approach, hoping we get a Surgeon with great skills, who actually cares enough to make a difference!!!
None of my ‘ramblings’ will surprise established forum members, I have been pushing for the increased availability of safer and more effective spinal surgical treatments for years, including faster more accurate diagnosis and surgical treatment which will lead to ‘better post op clinical outcomes’ for chronic back pain sufferers, in the long term. Things like dynamic X-rays (DMX), dynamic MRI scans (Upright), load bearing X-rays & nuclear imaging scans!
Sadly, to no avail!!
But what I have decide to do now, is to break down the findings of my research into ‘bite sized & focused posts’ in order to help emphasize the scale of the problems with the care of patients with chronic spinal conditions in the UK.
Such as:
Lack of GP’’s spinal Knowledge and accurate spinal diagnostics ability!
Poorly targeted and focused treatment plans for back pain sufferers with ‘early onset’ and ‘chronic’ spinal illnesses
Slow referrals to Spine Surgeons for sufferers with severe and chronic spinal conditions
Slow or denied access to diagnostics tests such as X-ray and MRI scans.
Inappropriate tests carried out on sufferer’s specific chronic conditions
Inappropriate tests therapies carried out on sufferer’s specific chronic conditions
Poor availability of focused, varied and long term physical therapies
Unreasonable funding refusals for ‘locally unavailable’ diagnostic tests, scans and treatment.
Outdated, wrongly targeted and dangerous Physiotherapist treatment plans
Total lack of accurate and targeted patient information regarding symptoms and diagnosis
Total lack of accurate and targeted patient information regarding treatment options and detailed operative information
Total lack of factual and peer reviewed clinical information regarding the safety, effectiveness, complication rates and trial results of ‘gold standard’ NHS spinal decompression procedures
Lack of transparency treatment protocols for ‘out of area’ treatments only available in another trust’s area and in the lack of funding for treatments only available in specialist centres
The need for ‘dedicated’ Spinal Surgeons to replace the ‘part time’ Neurosurgeons and Orthopaedic Surgeons
Unreasonable funding refusals for ‘locally unavailable’ MISS surgical procedures
Improvements required in the quality and duration of post operative care
Lack of diagnostic & treatment choices due to the ‘closed shop’ mentality of Surgeon & Trusts
The requirement for better Health Ombudsman control and responsibility
I look forward to posting and chatting soon.
Best wishes
SPINELF
WOW! You have been busy - and welcome back Spinelf :wave:
It's a lot to take on, but you have obviously been doing as much research as you can and come up with some interesting details. I am sure there are similarities in other fields too - eg thyroid issues.
Well done indeed. What are you going to do with this information? It really shouldn't be buried, as so much has been in the past. How can you publicise it?
WOW! You have been busy - and welcome back Spinelf :wave:
It's a lot to take on, but you have obviously been doing as much research as you can and come up with some interesting details. I am sure there are similarities in other fields too - eg thyroid issues.
Well done indeed. What are you going to do with this information? It really shouldn't be buried, as so much has been in the past. How can you publicise it?
Hiya Caroline!
Thanks for the warn welcome, it's great to be back!
I have always been fiercely proud of and a staunch defender of our 'precious' National Health Services, The best in the World, Thanks to it's Nurses, GP's and Surgeons. I have many family working in the Service an I as a family we will always grateful for it's help over my life.
But things have changed now, certainly in back pain services, almost to the point negligence. I suspect you are correct Caroline, this is almost certainly not limited to chronic back pain services, it will be interesting to see from the posted replies, just how much synergy there is between the medical disciplines?
Over the last 8 years, I have gone through hell and have had to fight every branch of service that was supposed to belong to and that should support every one of us back pain suffers!
Yet time and time again, I was blocked at every turn by, what felt like, a private health system!
This is not right, it is not just, and my hope is that I can help save all the HP Members with chronic back pain, not to waste their precious lives on a fools errand, like I have!!
I'm sorry Caroline, I have to go now, but i'll post reply to your question on distribution options soon! Thanks again Caroline!!
Best wishes and kind regards
SPINELF
Hi,
I agree with you on the poorly targeted physiotherapy thing. Mine made my back pain worse, I am sure.
I agree that MISS procedures should be avialable. However, the vast majority of surgeons are trained in discectomies, traditional stuff. If the NHS start offering this they would have to find trained and experienced surgeons. It will be hard to find them.
I know what you arw saying, and agree but if they offered this they are unlikely to find experienced surgeons because there aren't that many around! If that is the case, I am not sure how many people would like to undergo the prcedure performed by an inexperienced person. I also find that there are so many scary stories on the internet, it doesn't help that you are claiming discectomies are destructive etc just creates greater anxiety amongst those that need to make such a decision. Sure youbhave evidence and research but it is also well known that these surgical procedures also yield a positive result. I think MISS should be offered, but that doea not mean the NHS routinely offer surgery designed to damage peope
Hiya Hopeasgone!
For the record everyone, I have no commercial interest, no hidden agenda and no wish to make personnel attacks on individuals when posting!
It is the 'system' that is broken, and this needs to be put right, for the sake of millions of fellow sufferers and us, the tax payer, who are paying for a less than optimal spinal care services! I simply want to be part of this drive!
But I (and I know other sufferers will too) do have an 'axe to grind' against the UK private and public spinal health services, who, for so many years, for so many people, have failed in their duty of care! I understand that 'truth hurts' but without it, there can be no change!!
I do not believe or advocate the preposition, that any NHS & Private UK spinal surgical procedures are 'designed' to harm or damage anyone! Nor do believe that Surgeons go out of their way to do harm to anyone! On the contrary, you only have to look at the back pain threads on HP, to see that there are Surgeons who are trying to change things and giving good patient care! I want to see more, is that too much to ask?
However, I fervently believe and support the truth, that the rationale, efficacy and availability behind the continued use these highly destructive 'open back' spinal decompression procedures, carried out in spinal units up and down the country, are old fashioned, outdated and are not the 'very best' procedures available today. I reality, they have 'not been' the very best available for over 20 years!!
As a long term acute back pain sufferer myself, I understand members fears about surgical procedures and how my intentions can be 'perceived' to be negative and to affect their decisions, but the truth needs to be heard! Surely Hopeasgone, you do not advocate the proposition that a fellow sufferer should be 'ignorant' of the real dangers of open back surgery before their procedure? Surely you would want them to know that FUSION, (which was never designed to be leading spinal treatment) has never been fully trialed or had clinical outcomes published? (Royal College of Surgeons)
I will explain my position in detail on each individual subject post as I produce them, I would be grateful if everyone would focus on each specific subject matter for each post, in order to avoid the thread spiraling out of control in wider and generalist malaise!
The first post will consider the sufferers relationship with our first port of call, the GP!
I Look forward to posting and seeing your thoughts!
Best wishes and good health to all
SPINELF
Fair enough, but your posts do sound like scaremongering. I mean most people are told the risks of surgery. You can also look it up on the internet. A lot of people do improve with gia treatment. No one undergoes these procedures for fun, and neither do doctors knowingly harm people. Modern surgical techniques need to be incorporated into the NHS at all times, and I agree that MISS may be a good way forward. However, I do not think there is that much evidence to suggest that open back techniques are necessarily more harmful. They do cut more so recovery time is probably greater. Your sugeon may have missed somehing and mine might do so as wel. No matter what kind of surgery you udnego, no one can gaurantee 100% success. This is true for most. I think there is a case for MISS to be made available but in order to advocate it, you seem to be scaring people too because a lot of people will continue to have existing procedures. There is already enough negative information available and you seem to be suggesting that all the positive stories relating to traditional discectomies are probably the exceptions, since the theae procedures arw so 'destructive'. In the end, I am sure even Mr Knight makes mistakes and there are probably as many stories of failed MISSS surgery as there is of other kinds. Ideally no surgery is safe.
Hi Spinelf
It is fab to have you back and I for one thank you for continued research and hardwork into trying to get the truth out there. As a fellow chronic back pain sufferer I think the reason people object is perhaps because they haven't walked in our shoes. After four years of pain, failed surgery and now being left permanently disabled I understand what you are doing. Also if people don't like what you right they don't have to read it, so please for those of us who want you to carry on please do. It has been several months since some of us have wanted to post but I think if we disappear again the truth gets hidden under the carpet. It is only scaremongering if it is not truthful.
Rant over, take care
Wend xxx
Dear Hopeasgone
I covered a lot of your points in my previous post, but suffice to say, that all the points you make Hopesaregone are valid, and if you look back, you'll see I have continually agreed with these points during many other such conversations over the years with other members.
Where we seem to disagree, is whether urgent 'seismic' improvements are needed, what they are and are they needed now! I suspect that we will never agree on some of these points.
I know and expect a strong debate in the up coming posts, but I sincerely hope that members will contain their personal views, to the subject matter of each thread.
I take your point about the existing NHS procedures not being proven to be more harmful, and I will be covering the question of 'exactly' what peer reviewed evidence, there actually is available to sufferers, in an upcoming post.
Best wishes
SPINELF
WOW! You have been busy - and welcome back Spinelf :wave:
It's a lot to take on, but you have obviously been doing as much research as you can and come up with some interesting details. I am sure there are similarities in other fields too - eg thyroid issues.
Well done indeed. What are you going to do with this information? It really shouldn't be buried, as so much has been in the past. How can you publicise it?
Hiya Caroline!
I'm back!!
I'm thinking, that I want to start as a standard back pain thread on HP!
I have been trying to think of supplemental time effective distribution ideas, but quite honestly, I'm stumped!
I am open to any suggestions you have Caroline, seriously, anything!! I got nothing! LOL!!!
Best wishes
SPINELF
I look forward to reading more. The more I have thought about this issue, I definitely agree that for someone like me, eho is afraid of surgery, MISS sounds like the optipn I would have chosen. It is annpying this is not available on the NHS. If not for any other reason, just for the quicker recovery time. I definitely think these options should be more widely available.
Hi Spinelf
It is fab to have you back and I for one thank you for continued research and hardwork into trying to get the truth out there. As a fellow chronic back pain sufferer I think the reason people object is perhaps because they haven't walked in our shoes. After four years of pain, failed surgery and now being left permanently disabled I understand what you are doing. Also if people don't like what you right they don't have to read it, so please for those of us who want you to carry on please do. It has been several months since some of us have wanted to post but I think if we disappear again the truth gets hidden under the carpet. It is only scaremongering if it is not truthful.
Rant over, take care
Wend xxx
Great rant, don't stop!
Elfie, lovely to see you posting and bringing balance to a board that was at risk of mistakenly advocating surgery first, investigate later.
Look forward to the new threads 🙂
hi
the way i see i can go ahead and have my two level fusion due in a couple of weeks and risk permanent damage or i can refuse surgery and continue to be in agonizing pain and housebound at the age of 38 oh and be zombied on all the pills going down my throat.
clare x
hi
the way i see i can go ahead and have my two level fusion due in a couple of weeks and risk permanent damage or i can refuse surgery and continue to be in agonizing pain and housebound at the age of 38 oh and be zombied on all the pills going down my throat.clare x
Dear Claire,
I don't think anyone could remain untouched by reading your journey, and perhaps you are right about the fusion, but if MISS was available easily on the nhs then I have no doubt that you wouldn't need a fusion and in fact the first op would've had a very different outcome.
No-one can make up your mind for you, but if funding was available then a visit to Mr Knight and his team might give another option and that is what Spinelf is trying to get word out about, that there are better, safer, more effective alternative procedures out there.
hi
sorry for my ignorance i understand what you mean now
clare xxxxxxxxxxxxxxx
hi
sorry for my ignorance i understand what you mean now
clare xxxxxxxxxxxxxxx
Hiya Yogi!
I don't know where you live, or if you can get referred to Mr. Knight, but also try to see if you can get your GP to refer you to these NHS MISS Guys below, they have also both done Endoscopic work on the NHS in the recent past!
Mr. Peter Hamlyn
[DLMURL="http://www.spinesurgerylondon.com/about-us/the-spine-surgery-team/medical/spinal-surgeons/peter-hamlyn-neurosurgeon"]Peter Hamlyn | Consultant Neuro and Spinal Surgeon[/DLMURL]
Mr. Irfan Malik
[url]News - Private Hospital London, Private Hospitals, Private Medical Treatment | Harley Street Clinic[/url]
Best of luck
SPINELF