Mr Martin Knight/Colrob1 Please Help

[Weise Ente]

Hiya Mad Maz, I sympathise with your position. I am not supprised that your Consultant told you that he was not keen on doing more surgery, the main reason is that he will 'have to face' the same problems as Lemonelemi's Brother's Surgeons, He has to try and not create any more scarring and entry damage that would make your condition worse than any previous damage caused during your discetomy. Also any tethering problems left during or created during your last discectomy, is very difficult to clear using standard NHS open back procedures.

I have never spoken to any Surgeon or GP who would 'openly admit' to knowing of Mr. Knight and his minimally invasive treaments, but during my efforts to get my Local Health Board to fund my treatment there, the Medical Director of the LHB told me, that although Consultant Surgeons she contacted 'knew' of Mr. Knight and were prepared to 'brief against him' (off the record). But not one of them would put thier reservations into writing, neither did they offer any facts to dispute to supperiority of his treatments.
They would offer nothing on the record! Why! Why!!
As Mr. Knight will tell you, he is used to that reaction.
Its for you to do your reseach and make your own mind up!!

Where I agree with your Consultant is on the point of Spinal Fusion, AVIOD IT LIKE THE PLAGUE! I have tried to find aurthorative information and facts on the clinical outcome and have found very little useful facts, where I have found results, they show 50% good outcomes after 6 months, dropping to as low as 20% at 2-3 years post op.
I am not a betting man, but these are not good odds.

Yes Mad Maz, I know the Spinal Foundation number is live as of 5 minutes ago because I had to ring them myself, the best Number is 01260 296346 and ask for Christine Haygarth (Lunch 12-2pm) 'or' E-mail her at:
chaygarth@spinal-foundation.org or visit web site at:
www.spinal-foundation.org and read the patients comments and mission statement pages as well as others for 'other patients' stories.

I am told that some Trust areas and individual GP surgeries in 'England' have referred 'funded' patients to Mr. Knight at The Spinal Foundation in the past, I would suggest that you speak to Christine Haygarth as a first contact as she is the one who writes to them and she will be able to tell you if you are living in one of those areas. If not, she may offer to help in any case, she is realy nice!

I hope this helped

Best wishes


SPINELF

 

[uplilaprubdiz]

Did you get through Mad? Have you taken it further?

Best wishes


SPINELF

 

[qrevjuhdiccisvear]

Hi Spinelf
I did speak to Christine who said that I would be welcome to come along to be assessed and advised accordingly. She also said that my LHA do not provide funding with Mr Knight, but if either my specialist, or my GP, would be prepared to refer me to Mr Knight they could put a case together to put to the LHA.

Unfortunately neither my specialist or my GP were prepared to refer me, and even told me not to consider going to see Mr Knight. I was told that MR Knight does not provide statistics about the long term results of these procedures (and I have to admit that the table I was pointed to via this forum meant nothing to me).

Since my last posting on this topic I have been put onto a waiting list for another discectomy, and whilst I understand that it is just a 'stop gap' solution for a long term problem, I am hoping that the newer procedures will be more widely available in the future (when I may need more treatment).

It is mind boggling to try and sort all of this out on your own, and for now I just want an end to the pain. I cannot afford to pay privately, so if the LHA would't fund treatment with Mr Knight I would be back to square one.

That is why I was hoping to see plain and clear statistics for the long term results of the procedures carried out by Mr Knight.

Maz

 

[tarhousecafe2007]

I am so sorry to see that your health board is not one that will fund your minimally invasive spinal treatment at The Spinal Foundation.

My contact in my local LHB was also told that I should not consider seeing Mr Knight, these opinions were given to him by Spine Surgeons from Wales and England, who still perform the 'out of date' open back procedures. None of them were prepared to write down their concerns and none of them were prepared to speak to me in person. My GP even told me things about Mr. Knight which subsequently was proved totally false!

Such is the level duplicity and protectionism in UK spinal services.

I decided to make a 'freedom of information' request to find out the full information on the available NHS decompression procedures.
Their reply was this:

This NHS Spinal Unit does not record 'or' keep any information regaring the safety and effectivness of decompression procedures caried out at this Unit.

Also, no randomised control trials (RCT's) of spinal decompression procedures have ever been carried out at this Unit.

In short, There is no publicly available evidence to support the use of
NHS procedures such as laminectomies, spinal fusions, discectomies and
'so called' microdiscectomies, in 4 of the UK's biggest spinal units.

I know that Mr Knights evidence packs are 'hard work' for 'none medics' like us, but it is worth persisting with, as the amount of independant proof and peer reveiwed papers that you will find in those packs, 'far out strip' anything you will ever get out of the NHS, both in quantity and quality!

I share you hope that 'one day' all NHS spinal procedures will be minimally invasive, endoscopic and laser tooled, key hole surgey!!

Until then, take care and all the best.

SPINELF

 

[bhhyxftz]

There are some studies, like 5-year or 10-year follow up.

Unfortunately, this studies obviously do not mean anything to your authorities.

With minimal tissue damage, it would not be a disaster to repeat procedure in 5 or 10 years time. If someone tells me I will be okay for 5 years, and then I need to have another minimally-invasive spine surgery - I WOULD SIGN THAT IMMEDIATELY.

Just my observation.

 

[pafthpha]

Well put Keano!!

 

[Mehdi]

Hi

Since my last post on here I have discovered that the waiting time for my discectomy is not 6 weeks, but 18 weeks.

I have been trying to get the date pulled forward, but it seems to be nigh on impossible, I have asked for another appointment with my consultant to see why he is telling patients this reduced time.

I have also contacted my private health insurance company and asked if they will cover the cost for me to see Martin Knight. I was shocked and suprised to learn that they will (initially some time ago I asked to be referred to the Spine Foundation and they didn't have that registered - doh).....

I now have an appointment at the end of March with the Spine Foundation, so will at least get a second opinion, if not advice/treatment.

I actually thought that the NHS wasn't too bad - don't ask my opinion now.

Maz

 

[seek513]

Glad to hear all this!

 

[kammy]

Well done Mad, good work! Good researching!! I'm proud of you!!!

By the by, if you want more personal or private information on what to expect at the consultation or during surgery, feel free to 'PM' me at any time.

Best wishes


SPINELF

 

[Lila Surbia]

Well I went to see Martin Knight at the Spine Foundation, and though the journey left me unable to walk properly and in extreme pain, I am glad that I went.

Mr Knight spent two hours reviewing my MRI scan, weight bearing x-rays, examining me, and explaining fully what my options are. Unfortunately I developed 'brain freeze' from the amount of information and the pain, and by the next morning couldn't recall everything that we had discussed. Mr Knight will be providing a written report for myself and my GP so that will be useful.

He was very surprised that my NHS consultant has left me for this long as he said that if the prolapsed disc gets any bigger, which could happen if I stumbled/fell, I would be at risk of permanent damage to the nerves affecting my lower limbs which unless operated on within 8 hours could be irreversible. He has known people with smaller prolapsed discs than mine who have ended up in wheelchairs.

He has recommended the endoscopic lumbar decompression and foraminoplasty procedure and I am provisionally booked for 6th May. I now have the problem of raising the money to pay for it if my private health scheme will not pay (which Mr Knight thinks is highly unlikely as it is not a standard procedure).

The procedure appears to surpass anything that is offered on the NHS, and will hopefully be very successful. I have waited for several weeks now for my discectomy on the NHS, and feel that the op with Mr Knight is my only chance to be able to have some quality of life.

I will keep everyone posted on the outcome, meanwhile I wish you all well x

 

[Darby T]

I am glad that you are happy with Martin. I hope you can get the money needed.

Trust me, you are in best hands. This surgery he plans to do on you is most advanced spinal surgery method in the world.

All best

 

[ASHIL]

The response from the NHS is astonishing, no record of safety???? No clinical trials???

In some ways the lack of clinical trials and thus evidence on effectiveness is less surprising though. The BackCare Journal recently mentioned research that Stanford Medical School is doing that suggests that MRIs may be detrimental to the diagnostic process and result in unnecessary surgery. They also pointed out that in some cases the damage seen on an MRI may not be the cause of pain. Very worrying.

I do wonder how a procedure gets accepted by the NHS without any clinical trials? The lack of these is normally the 'stick' used to beat 'alternative' therapies with. Seems very hypercritical to then be recommending procedures that are also unproven by 'clinical trials'.

Pete

 

[jim jim the dog faced boy]

People that don't know anything about MISS like to talk about it, that is main problem in some systems.

 

[Samira]

NICE, the people that control the introdution of newer, safer and cutting edge spinal procedures into the NHS and private spine surgery main stream in the UK, employ panels of 'specialist decision makers' who rule on the facts of any new procedure that wants permission to be introduced. This is sold to us as a safeguard to the public.
The fact is, that these decision makers are main stream Surgeons who are not doing 'or' who are not capable of doing these cutting edge procedures themselves.

Furthermore Pete, the point you make about the 'stick' is true, for new procedures to enter the main stream NICE requires them to prove it's 'safety and Effectiveness', as I have shown, the standard treatments we are told we must accept, cannnot meet this minimum requirement!!

Hippocritical indeed Pete!!

With regards to your point about MRI's, along with good quallity load bearing X-rays, these are the best diagnostic imaging scans available,
the problem is not the scans, but the quallity of the Specialists reading them. Interpritation can be very, very poor and highly varied across the UK. All too often they are mis-read and then the mis-diagnosis
begins and mis-treatment follows, as does our continued suffering.

All the best


SPINELF

 

[Pishee]

Eeek! Three days to my procedure being done, and I am starting to get a little bit nervous. In one respect I can't wait to start the recovery process, but in another respect I dread being woken up during the procedure to 'test' my nerves.

I hope that the next time I post I will have some really positive news, please Lord.

Meantime I hope that you are all enjoying the Bank Holiday, and if like me it is just another day to get through, then try to get through with a smile

 

[krazykhrystyne]

How did it go? Is there any news? Mad Maz? What was it like, can you give us a full report please

Hoping that you are much better and pain free right now xx

 

[Lazy Girl]

Hello
I am almost three weeks post op now and things have definitely improved on my right side. I still have exactly the same symptoms & problems on the left but they may still settle down, If they don't I may need to have another op as I had problems at more than one level, and the op was done at L4/L5.

The procedure was not as scary as I had feared and I would go through it again - no hesitation - if I needed to. I was awake the whole time and talked constantly, though some people sleep through most of it, There are a range of sensations from very mild to quite painful (when the consultant is testing & 'freeing' your nerves). The op lasted for about three and a half hours after which all I wanted to do was sleep, but of course the nurses check obs every hour, so there was no chance of sleep . I was allowed out of hospital the following day, but I didn't travel home until the day after that (stayed in a B&B near to the hospital).

I would have no hesitation whatsoever in recommending Mr Knight and if anyone wants more information/detail, please PM me with any questions.

Maz

 

[provider 8]

RUDY BRILLIANT NEWS MAD!

WELL DONE YOU!!,

KEEP UP THE 'STEADY' REHAB!!!


ALL THE VERY BEST!


SPINELF

 

[vivek]

Martin Knight and his spinal foundation updated their website: www.spinal-foundation.org

 

[Pompal 09.]

Hi
The link that you have posted for the Spine Foundation doesn't seem to work. I have also tried to access their page from my 'favourites' but it does not work either.