SURGICAL PROCEDURES FOR TREATING SPINAL CONDITIONS
One of the main purposes of our website is to inform the public of the dangers and fallacies related to spinal surgery. When I started my studies of the spine more than 30 years ago, I came to the conclusion that spinal surgery was definitely the wrong approach to the treatment of chronic and acute back pain, because no matter how serious a spinal condition, it can always be cured, or at the very least made asymptomatic, using Orthopaedic Medicine.
General Facts and Information
Over 20,000 spinal operations are carried out in the UK each year, and more patients allege negligence after spinal surgery than for any other type of operation. The same probably applies for operations in the USA.
A common surgical procedure is spinal fusion which in theory is intended to stabilise a section of the spine that may need supporting due to slippage or some other deformity and thereby to remove pain. In practice, the operation is invariably a failure leading to serious and debilitating consequences for the patient. One reason for the operation’s failure is the fact that the cause of the patient’s slipped disc is never taken into account. If for example the patient has a slightly shorter leg (“short leg syndrome”) which has led over time to the patient adopting a protective walking gait or posture, then by fixing vertebrae in a rigid position the spine is no longer able to adjust itself to correct any imbalance. By focusing on the ‘slippage’ which needs additional support, the factor creating the imbalance is invariably overlooked, and pain becomes more intense than before the operation, appearing in other parts of the body which were not previously affected. The correct approach is to mobilise the affected joints and to prescribe appropriate exercises and movements to strengthen muscles to prevent slippage from occurring.
The surgeon is not trained in Orthopaedic Medicine and is therefore unaware of other procedures such as mobilisation for correcting a slippage or herniated disc. Discectomies are also performed (where discs are removed or cut away) in the belief that this will reduce pressure on adjacent nerve roots. However, no account is taken of the fact that a chain is only as strong as its weakest link. If one of the links in the chain is fixed rigid or removed, the whole structure soon becomes unstable due to the intervertebral pressures which are created. A discectomy weakens the segmental area and scar tissue and adhesions soon develop, leaving the patient in pain and much worse off than before the operation. There is permanent weakness and crippling debilitation. The spine is a bio-mechanical wonder, but it cannot function properly if discs are cut away or vertebrae are fused together; and many patients are persuaded to undergo more than one spinal operation when preceding operations fail.
Then there is the question of ‘money’, for even if a surgeon is aware of non-surgical treatment options, he would have to be prepared to lose a patient/customer in order to recommend non-surgical treatment options; and most hospitals cannot afford to keep their beds empty for any length of time.
Specific Facts and Information
1. 60% of spinal fusion patients will continue to suffer from back pain. A full recovery is uncommon and cannot be predicted.
Nerve root damage; post operative neuroma; dural tear; leaking cerebro-spinal fluid; post-operative infection; discitis; cauda equina syndrome; deep venous thrombosis (a common side-effect); post-operative hypotension; peripheral nerve injury. Nerve roots can be damaged during open discectomy, decompression for stenosis, spinal fusion, or by subcutaneous procedures such as epidural or cortisone injections. A single nerve root injury can be transient or permanent. The latter is very troublesome, while multiple root injury is disastrous. An S1 root injury may cause complete foot drop, while damage to the S2-4 nerve roots may affect the bladder, bowel, or sexual organs. In all cases of nerve root damage there will be sensory or motor symptoms.
In discectomy, a nerve root usually lies directly over a protruding disc and it has to be retracted to one side in order to remove the protrusion. While the surgeon extracts the disc fragment, the assistant holds the nerve root out of the way with a retractor, and it is during this period that nerve root damage often occurs, because the root may already be functioning on a very limited blood supply and any slight manipulation during surgery can cause a critical problem which from time to time will occur even in expert hands. The consequences of nerve root damage are only evident when the patient wakes up from the anaesthetic to find that the pain is worse than before with weakness in a limb. Quite often a jerk of the leg during surgery warns the surgeon too late that nerve injury has occurred.
A contused root is initially very painful and many patients continue with severe disabling pain for many years. They complain that the pain is stabbing, shooting, burning and very unpleasant. The chances of recovery from nerve root injury is poor. Some patients have to learn the technique of self-catheterisation and daily manual evacuation of the bowels. Their life expectancy is reduced because repeated urinary tract infections will damage the kidney.
There are considerable neurological risks in spinal surgery, so please treat these facts seriously and search the web for stories. There are plenty. If you still wish to undergo surgical treatment then at least you are now aware of the risks involved, which we believe are totally unacceptable bearing in mind the fact that virtually all spinal operations result in failure of one kind or another.
Here it is one of the appaling stories. We warned this Lady years ago, before her first operation. Yet, after all the ordeal, she is still considering another surgical solution…
MY HISTORY AND SYMPTOMS
I will explain my situation in full in this email and the tests and treatments I have had to date including a migraine diagnosis which I am absolutely convinced I do not have. I hope it is ok for me to send you such a very long but hopefully fully detailed email and I truly hope you have the time to read it and give me some advice as to what I can do and whether my problems are beyond your remit or not..
As I said I now feel that I urgently need this to be properly addressed and I have been refused any further diagnostic testing, despite it being available on the NHS and have been refused a referral to see Dr Linda Gray of Dukes Medical Centre, NC, USA through the Exceptional Treatments Committee of the National Health Service. I appealed this decision and I presented more information and facts as to the facilities available however I was unsuccessful.
I now know that I absolutely need to find someone that is prepared to listen to me, take me seriously and carry out EVERY test available to diagnose me correctly, importantly be skilled enough to interpret the tests correctly and hopefully give me back my life. I have suffered tremendously and have been seriously depressed and attempted suicide twice although I have been having counselling for 20 months and am in a better place mentally but nevertheless I am extremely desperate.
I feel it is important to mention that I have been extremely sick for 5 years and 4 months. I have no quality of life whatsoever. My symptoms are increasing to an almost unbearable level. Certainly within the last 4-6 months I have deteriorated considerably.
I am aware that there is a risk, albeit a small risk, of subdural hematoma in prolonged cases of CSF leakers. A lot of medical professionals are unaware of the possible risk of subdural hematoma caused by CSF leak. The fact that this is rare is irrelevant if you happen to be one of the people unfortunate enough to have a bleed on the brain caused by tearing of blood vessels from spinal fluid leak. People have died from this. (It is extremely rare to suffer a tear of the dura during decompression surgery, however this happened to me).
Other risks of not having a blood patch/blood patches when you have leaking spinal fluid (CSF) are generalized sagging of the brain and herniation of the cerebellum through the foramen magnum (the hole in the base of the skull where the spinal cord goes) also called Acquired Arnold Chiari Malformation which happens in about 80% of cases.
Cranial nerve palsies and even blindness are other rare complications of a CSF leak. My eyesight has deteriorated dramatically. Especially in the last 6 months. I have pain behind my eyes constantly and my vision is blurred almost all of the time and I am always squinting. This concerns me terribly. The thought of going blind is unthinkable.
I am unaware of the degree of technology in place in the UK however the extensive research I have carried out clearly demonstrates a lack of neuroradiology departments that see larger volumes of spinal CSF leaking patients and therefore there are quite definite limitations in diagnostic availability. Whereas, in stark contrast, Duke Medical Centre (Dr Linda Gray), The Mayo Clinic (Dr Mokri) and Cedars-Sinai (Dr Schievink) most definitely offer a higher degree of additional expertise to improve the sensitivity of imaging and how the imaging is read.
It am truly worried that I will not get any further help here in the UK and if I were to do so, it would not be within an acceptable time span. Each and every appointment has taken months to get. I now have nowhere left to go.
I need to have these diagnostic tests carried out urgently in order to have any chance of finding the cause of these headaches, a cure/heal, and any quality of life.
September 2007: spinal surgery L5/S1 on a herniated disc carried out in Hospital Juan XXIII of Tarragona Spain. I was living in Spain at the time. Five days later I was sent home with a headache. Twenty four hours later I woke to a saturated bed, clear fluid literally pouring out of my back and I was unable to get upright without passing out. I was re admitted to the same hospital and was told I was having a huge, fast CSF leak. They operated a few days later to repair the leak. Twenty four hours after the repair surgery I had contracted meningitis. They treated this with IV antibiotics. 48 hours after the repair surgery I had another fast leak which they could not operate on until they had treated the meningitis.
Approximately 10 days later I then had further surgery to repair the leak. I was in hospital for almost 3 months on absolute bed rest for 10 weeks from beginning of first surgery. Once I was up and walking around slowly on the ward they sent me home. I was still suffering constant headaches but they said there was nothing more that they could do and as the scar had healed and I was not leaking ‘out of my body’ then if there were a small leak it would heal itself on bed rest.
During the following two days my headache became much much worse especially when i was lying down. I was hallucinating for 2 days, and in excruciating pain. I then felt/heard a loud popping sensation and a large grapefruit sized fluid lump developed at the site of the operations. (I now believe that headache accompanied by the halucinations were a result of high pressure that had not been treated or addressed and that eventually the high pressure blew out the repair).
I eventually rang the hospital and they refused to see me telling me to stay in bed as because the fluid couldnt leave my body now, it would be absorbed into my body and eventually I would be fine.
The following few months were spent in and out of hospital with unbearable headaches. By this time my back and legs had started to hurt again as if I had never had the surgery in the first place. (I now believe this is nerve irritation from the continuing CSF leak). During this time there had been very many MRI and CT scans carried out both with and without contrast. All of them showing the area where the operations had been but none showing anything particuarly unusual.
Finally during one admission I had a lumbar puncture carried out where they took a reading. This was carried out after a long period of bed rest and I was laying down when they took this reading and removed the liquid. The report that was written stated the following (bearing in mind that it was carried out in Spain it is written in Spanish first and then I have done my best to translate it:- se sacan 20cm3 con una presion inicial de 12.5 cm y una presion de 5.5 cm de aqua…so I think that means they took out 20cm3 with an initial pressure of 12.5 cm with pressure of 5.5 cm of water. I was then sent home and collapsed about 4 hours later with the same horrendous head that I had had when I had my initial leaks.
Following this the same hospital decided that they would do a radionuclear cisternography. This was done over 72 hours. Between the scans I was mobile, driving or being driven to and from the hospital, walking about as much as my head allowed at home and generally moving. This cisternography showed a leak.
I then sought a second opinion and was sent to a hospital in Barcelona, Belvitge Hospital. There I saw a neurosurgeon who said that upon seeing the images and the report from the neuroradiologist that had carried out the cisternography he also thought I had a leak and would do a blood patch.
This was the most horrendous experience I have ever been though. I was in the operating room for an hour and a half sitting almost naked on the side of the operating table without any form of sedation and the neurosurgeon trying desperately to get a needle through the scar tissue to insert the blood.
He failed to do so and gave up. (his pre written report on this was that he was going to insert only 5 mls of blood so I doubt it would have done anything anyway) He later rectified this report stating that it had been impossible to carry out the blood patch.
I then, in October, relocated back to the UK. Because my headaches were completely continual every day worsening each day I was admitted to Taunton Musgrove Park Hospital. I was an in patient on complete bed rest for a week when they decided this was almost definately a CSF leak and sent me to Bristol’s Frenchay Hospital where I remained on bedrest. After 4 days they carried out another radionuclear cisternography but only over 24 hours and I was on complete bedrest all the time. This showed no leak but then as I wasnt moving about they didnt expect it to anyway. I have since found out that it is rare to see a leak after 24 hours anyway, more frequently the leaks would generally be seen between 48 and 72 hours. I also know that these tests are not particuarly reliable anyway. I was discharged and told there was nothing they could do.
I then got a referral to see a Neurosurgeon at Plymouths Derriford hospital. She was of the opinion that I could still be leaking but referred me to her Neurologist, Dr Stuart Weatherby. (he has published articles on CSF leaks and diagnostic tools available). He decided this was also most likely a CSF leak and gave me caffiene infusions. These had no effect at all. He then referred me on to a Dr Matharu at the National in London.
For the following year I had various visits to the National. Caffeine infusions, POT’s testing, MRI and CT scans without contrast, and finally, in October 2010 I had ICP bolt pressure monitoring under Mr Watkins at the National.
After 4 days of being attached to the ICP bolt and very high readings constantly showing, they decided the wire was faulty and changed it. Then I had a few days of readings between -5 to 0. I was not moving about as I was attached to a laptop. Ordinary daily life is not possible and ICP bolt monitoring is not considered to be reliable in diagnosing low csf or csf leaks.
I was eventually sent home and got a telephone call to say that the ICP bolt readings were ok and that I have migraines which can be managed locally by Dr Weatherby. 5 months later (April 2011) Mr Weatherby gave me GONI injections which caused me even more intense headaches with vomiting and I was very ill.
I had no follow up appointment with Dr Weatherby and had to start again searching for help. I waited for 5 months to see the Pain clinic at Derriford hospital however I believed this would be to discuss a High Volume Blood patch but when I spoke to the nurse working with Dr Taylor she told me that he does not carry these out very often and probably wouldnt consider this for me and cancelled the appointment without further discussion!
During the last 2 years I have carried out two, 3 months periods without taking any pain medication (Dr Matharu said that headache was/could be caused by medication overuse) I have carried out headache diaries, sleep diaries, food diaries. I have been prescribed an inordinate amount of different medication to try over the 4 years, but nothing whatsoever touches my headache except laying down and IV morphine.
In November 2011 I found and saw a consultant Neurosurgeon privately called Mr Chopra in Wales and he referred me to see Mr. Casey privately at The Wellington Hospital in London. Following my private appointment he agreed to transfer me over to the NHS and see me at the Complex Spine Clinic in April 2012. Following this consultation I had more scans at The National Hospital for Neurology and Neurosurgery which have revealed more protruding discs and then in August 2012 I had a CT Myelogram during which an opening pressure was taken and read 18.5.
The anaesthetist inserted 22 mls of dye and carried out the Myelogram. I felt the best I have ever felt during this whole awful experience for approximately 24 hours. Then the headache started to return and instead of stopping at the usual 6/7 out of 10 pain level it carried on getting worse. Since then I have been unable to be upright for more than 10 minutes and I am in the worst pain ever. By the middle of each and every day I hit a 10 out of 10 pain level and am sobbing with the pain. I never have a minutes relief or a day where the pain is less. I believe that the myelogram has created another leak.
I have been admitted to my local hospital by my GP three times since the CT Myelogram was undertaken. The first time being for 6.5 weeks and they eventually transferred me up to The National Hospital for Neurology and Neurosurgery for a blood patch with Dr Mary Newton, more scans, and discussion about more ICP bolt monitoring. However a day after I arrived I developed a lump under my left ear and they thought I may have mumps so they discharged me. I have not had any further treatment or tests at The National since and in fact I have been discharged to my dismay.
The second time I was admitted again to the local hospital, Musgrove Park Hospital, but they felt they could not help me and did not admit me. That was in December 2012.
The final time I was admitted was two weeks ago. I was an inpatient for 6 days and they really didnt know what to do with me but during that time I was on IV morphine which did give me some relief whereas oramorph doesnt any more. However on day 6 they decided to withdraw this and as I was going back to being on the same medication I had been admitted on I decided I may as well be at home in my bed on the same medication but I cannot describe how desperate I am for help. I cannot continue any longer in such dreadful pain and with no consultant caring for me.
So that is the history. now the symptoms.
I have headaches all day every day. They worsen about 15 minutes after I get up and become more and more intense throughout the day. They are relieved a lot when I am flat.
I have pain/pressure feeling behind my eyes, but am not light sensitive. This also worsens through the day, I get blurred vision and my eyesight in general worsens throughout the day until early evening when I struggle to see anything clearly. In the mornings my eyesight is much better although no where near like it was prior to all of this happening.
I have muffled hearing, popping in the ears a lot (20 or more times a day), very similar to cabin pressure in an aeroplane, occasional ringing in the ears, mostly the right ear but can be both. I get dizzy a lot, again towards the end of the day more so.
Towards the end of each day my neck gets stiffer and stiffer. My head feels like it is being dragged into my shoulder blades.
I feel nausea from about 3 hours after getting up until I go back to bed.
I cannot sit in a normal chair. if I do, for example to try to eat a very quick meal, my headache will worsen very quickly and when I stand up I get a thunderclap headache which is unbearable. I have to stand still, hold on to something, shut my eyes and wait until the pain dulls enough for me to be able to move again.
Even lounging on the sofa, if I am not flat enough will cause the same headache to occur. It never stops and the only way I can really live with moderate pain is to be laying down as flat as possible all the time.
I have awful back pain and leg pain always, but it also worsens through the day depending on how much I am vertical. I am now in a wheelchair constantly and only stand for a moment or so supported to get something from a higher place for example. However I am rarely upright so only use the wheelchair to get from room to room.
Towards the end of the day any form of conversation is almost impossible. I cannot concentrate enough to maintain a conversation.
In the last few weeks I have also started to have problems with my arms, mainly the left arm which tingles a lot and goes numb most nights despite not lying on it.
I cannot lay on my stomach at all. This makes my headache a lot worse and also the numbness in my arms worse. Straining of any sort makes my head much worse. Especially going to the bathroom. Coughing, laughing (not that I do that much) crying which I do a lot, sneezing, chewing, all make my head worse but more so at the end of the day.
From about lunchtime onwards my head gets hotter and hotter and feels like a vice is tighening slowly but surely. (I tend to wake at about 8am, eat a slice of toast and then sleep again until 11am). My face goes red towards the end of the day and my jaw feels tighter. My left eye has started to droop.
The longer I am awake, the worse the pain gets. My back and legs hurt constantly and the right leg is numb as is my stomach, and buttocks.
I begged Dr Weatherby to carry out some of the diagnosic tools available to either discount or confirm a CSF leak. He is not prepared to carry out any invasive testing.
Since being under Mr Casey I have been offered a blood patch but this has not been carried out and Mr. Casey has now discharged me.
It seems everyone is scared to go near me because of my history. Therefore I find myself in the situation where I must try to seek the correct, interested help of an excellent neurosurgeon who would be prepared to do ALL the diagnostic testing available.
I believe that the best move in the short term would be for me to have another CT myelogram (total spine/neck) done, with imaging within 30 minutes of the contrast injection, then if no leak seen, repeat the CT of total spine/neck at 2.5 to 3 hrs post-injection (which can pick up slower leaks).
An opening pressure should be done at the time of contrast injection. And a blood patch done afterwards to ensure another leak doesnt occur.
If my leak shows up, if I cannot find a neurosurgeon highly skilled/prepared and well practiced in solving this problem I could possibly send a copy of the imaging to Dr Linda Gray of Dukes Medical Centre or Dr. Sschievink of Cedars Sinai, LA., for him to review. (I am aware that some radiologists do not read these accurately and it takes an exceptional specialist to interpret the images correctly. I know that Dr Gray, Dr. Schievink and Mayo clinic seem to read imaging extremely accurately. Dr Gray has offered to work with any specialist in this country that would be willing to work with her, she has even offered to come to the UK and work with a team that wanted to specialise in this dreadful illness.
If a leak does not show up, I believe I should have a large volume epidural blood patch done, with as much blood as I can handle and prolonged bed rest, done with some IV sedation. (like Fentayl/Versed). Then see what happens. Especially given that the probably site of the leak is where the surgeries/CT Myelogram were carried out.”