A group from Japan have been experimenting using a preclinical (animal) model, to investigate how spinal cords of different ages react to the same compression force. Using a technique called Finite Element Method, more typically used in engineering, they have shown that in an older spinal cord the same amount of compression causes a much higher stress to the spinal cord tissue, than in a younger spinal cord. This was the same for sudden or slow compressive forces.
Of course this experiment has not been conducted on human spinal cords, but the findings are in keeping with a wider experience of aging and CSM and is a further reminder of the need for more sophisticated tools to represent the extent of spinal cord injury in CSM.
1. Okazaki et al. Age‐related changes of the spinal cord: A biomechanical study. Experimental and Therapeutic Medicine 2018
Risk of acute coronary syndrome in patients with cervical spondylosis
What were the aims of the study?
Various studies in the past have described cervical spondylosis (CS), the degenerative changes in the cervical bones and ligaments contributing to degenerative cervical myelopathy, as associated with increased sympathetic nervous tone.
The sympathetic nervous system plays a role in controlling blood pressure, heart rate and various other aspects of our cardiovascular health. But part of its control structure also lies in close proximity to the cervical spine.
The authors noted that no research had been done to link the above statements, if CS does cause increased sympathetic activity, does this logically follow that CS causes an increased incidence of cardiovascular events?
With this in mind, the aim of the study was to determine if cervical spondylosis increased the risk of cardiovascular health issues, specifically acute coronary syndrome (ACS), which in common terms is a heart attack.
How was the study performed?
All the patients were followed up until they had a diagnosis of ACS, died, or the end of the research period occurred at the end of 2011. After this, the number of ACS events in each group were measured as a rate over the number of “person years”. This being the number of times a diagnosis of ACS was made for every year a patient lived.
In this paper, the incidence of ACS was measured as number of ACS/1000-person years. These were then compared between various groups to obtain a ratio, to determine the relative risk of ACS occurring in a person with CS compared to someone without ACS in a similar state of health.
Help Myelopathy.org Help You.
Share your experience to further understanding in our health surveys
What were the main findings?
Looking in more detail at the patients with CS, for those with myelopathy the risk was slightly higher, increasing by 20% but interestingly, it seems treatment of CS has an effect in reducing ACS risk:
- Patients receiving spinal decompression surgery were less likely to have an ACS (27% reduction)
- Patients receiving rehabilitative therapy were less likely to have an ACS (33% reduction)
The statistical difference between the form of treatment for CS and reducing ACS risk was not significant.
How could cervical spondylosis cause acute coronary syndrome?
What can we take from this study?
There are a number of limitations to this study, and the actually increases in risk are relatively small. But it adds to the research of CSM and Cardiovascular disease, and once again shows the far reaching impacts of CSM.
M. Singh, I. Khurana, Z. Kundu, A. Aggarwal, Link of sympathetic activity with cardiovascular risk in patients of cervical spondylosis, Int. J. Clin. Exp. Pathol. 3 (2016) 41e44
M. Singh, I. Khurana, Z.S. Kundu, A. Aggarwal, Galvanic skin response in pa- tients with cervical spondylosis, IJHSR 6 (2016) 148e152.
 N. Marina, A.G. Teschemacher, S. Kasparov, A.V. Gourine, Glia, sympathetic activity and cardiovascular disease, Exp. Physiol. 101 (2016) 565e576,
Researchers from the University of Nottingham are looking into this, and want to learn from your experiences!
Can you help? Find out more about the study and its lead investigator
What is the significance for CSM?
Sharing your experience will help forward our understanding
Following the publication of our article in the British Medical Journal, one of the readers wrote into the BMJ to describe something he has seen in patients with myelopathy; something he calls the Mobile phone sign! He has found in his professional practice he often finds patients coming to see him complaining of frequently dropping their phone, to the point where they have had to buy a special protective case and this helps him suspect a diagnosis of CSM.
As you also know, most patients with CSM wait far too long to be diagnosed and that this can lead to greater disability. We are therefore always on the look out for new ways of detecting CSM - could 'the mobile sign' help doctors in primary care? It is estimated that by 2020, 70% of the world's population will own a mobile phone
As you have reconfirmed in our previous blog poll, clumsiness is a common symptom of CSM, but specifically have you noticed any problems with your mobile phone? :
Over the last few years, we have talked about diagnosis of CSM a lot, including how the diagnosis of CSM can be difficult, as it can resemble so many other conditions. However, as you all know, this is an important topic of conversation, because as a general rule: the earlier CSM is diagnosed, the earlier an operation can be performed, the more spinal cord function which can be preserved and the better the chance of recovery.
As you know, a diagnosis is based on a combination of the neurological examinations (testing reflexes, sensation and motor control) and MRI imaging (see Figure 1). This method of diagnosis is ok, but it isn’t perfect. At the moment imaging alone can’t tell us whether you have myelopathy or the extent of it – at the moment we have to wait for symptoms to appear. This may be because present imaging techniques are good at showing us changes around the spinal cord (e.g. where the compression is), but features of the spinal cord or within the spinal cord are inconsistent and the ‘health’ of the spinal cord is not assessable.
DTI is a relatively new technique, still based on MRI imaging, but analysed in a different way. It is able to use the movement of water molecules to identify structures, and therefore show different types of information. This is relevant for the spinal cord as it allows the neural pathways within the spinal cord to be depicted. This technique has been around a while, and researchers have been looking at its use .
Like with any new information, researchers have been trying to understand whether this offers relevance to helping patients
Machine learning is a new process, where computers are used to spot patterns in data which are just not appreciable to the human eye. It’s a ground breaking technique which is being applied to all sorts of different processes; Google recently purchased DeepMind, a specialist in this area for £400m .
A group from China have been using this process to look at DTI imaging in CSM. They tell the patients which scans come from healthy patients and which come from CSM patients, and the computer searches for differences . Following this development they compared the performance of the computer to a group of spinal surgeons, and found the computer was correct 93% of the time.
This was a very exciting result, especially as Wang et al didn’t tell the computer what specific information to use when figuring out if a scan showed CSM or not. They just used an average of information from across the whole spinal cord, without attempting to select those features of the DTI scan which are key for CSM. This is an issue, as if the computer is considering irrelevant aspects of the scan then this is likely to distort the actually relevant data and potentially lead to a misdiagnosis.
This year, Wang et al improved on their efforts  by figuring out what information the computer should pay attention to and what it should ignore. They used essentially same method as before:
- Show the machine DTI scans (one spinal level, figure 3) from a group of healthy patients and a group of confirmed CSM patients. Tell the machine which is which and allow it analyse differences between them, building a model of how to spot CSM
- Show the machine a group of test patients and tell it to diagnose them as CSM or healthy
- Have senior spinal surgeons diagnose the same patients and compare the results to the computer
In 2015 Wang et al’s computer looked at the entire surface of the cord (figure 4) and calculated the mean of what it saw. This time around, the divided the cord up into chunks called ‘voxels’ . They then used a computer algorithm to determine which voxels had the most power to distinguish healthy cord from CSM. The question is now how many voxels to look at – too many and the data all blurs together, too few and important points may be missed entirely. They found that computers spot CSM most accurately when they look at the 60 most important voxels of the cord.
Wang et al divided the white matter of the cord up in lateral (edges), ventral (front) and dorsal (back) portions (figure 6), and told the machine to look at voxels in one of these three locations. They found that the computer spotted CSM best when it looked at the lateral portions. This agreed with another study .
MR scans and DTI scans actually work by looking at the movement of water. Information in DTI scans can actually be split up into types, depending on what aspect of water movement is being looked at. This study found that something known as ‘fractional anisotropy’ (basically a measure of how likely water is to move along a line in one direction) was the most important for distinguishing CSM spinal cord from healthy cord.
Altogether, these refinements made the computer 96% as accurate in diagnosing CSM as the group of senior spinal surgeons.
Right now, not a huge amount. While the computer achieved some astounding results, neurological exams by senior surgeons still remain the gold standard for overall diagnosis of CSM. The researchers themselves stress that their work is only a “blueprint”. However, the results are promising as they suggest that DTI could eventually make its way into every hospital, without the need for expert interpreters.
Progress for machine learning will also greatly enhanced once we better understand CSM. For currently the computers are detecting patients based on our current diagnostic practice, which we know is limited; for some patients may not have compression on MRI imaging, or very subtle symptoms. But clearly this technique holds great promise for the future.
 Wang, S.-Q. et al. Prediction of myelopathic level in cervical spondylotic myelopathy using diffusion tensor imaging. J. Magn. Reson. Imaging 41, 1682–1688 (2015).
 Facon, D. et al. MR diffusion tensor imaging and fiber tracking in spinal cord compression. AJNR. Am. J. Neuroradiol. 26, 1587–94
 Wang, S., Hu, Y., Shen, Y. & Li, H. Classification of Diffusion Tensor Metrics for the Diagnosis of a Myelopathic Cord Using Machine Learning. Int. J. Neural Syst. 28, 1750036 (2018).
 Vedantam, A. et al. Diffusion Tensor Imaging of the Spinal Cord. Neurosurgery 74, 1–8 (2014).
Stay tuned for more informative and (hopefully!) exciting blogs next week!!!
Shirley explains that living with DCM is life altering in many ways. A major concern for people that have been diagnosed with myelopathy or any similar chronic condition, is that not only do you have to deal with the challenges of living with chronic illness & disability, but you also have to look at the financial implications that it also brings.
When diagnosed, I was working part-time as a Home Help. However, it became physically impossible due to pain, fatigue & deterioration in symptoms.
I received Statutory Sick Pay, but, eventually, was obliged to apply for Employment Support Allowance (ESA). I was placed in the Work Related Activity Group (WRAG) after surgery, even though I was still recovering & the DCM had not resolved.
I was unaware I was entitled to anything else until informed by a concerned employment advisor about eligibility for the ESA Support Group and also Disability Living Allowance (DLA) (now known as Personal Independence Payment – PIP).
Both applications were denied by the Department of Work & Pensions, but, thankfully, I won on appeal. Being awarded DLA enabled access to other financial support of which I was also unaware.
Consequently, sharing such information is my passion. Dealing with DCM is difficult enough without worrying about finances. And because of this we are now putting together a benefit information section that can be found under the support section at myelopathy.org
But we need your help. Despite being a very cosmopolitan group, benefit information for our international members is sadly lacking. Please help us to rectify this so all our members have access to the financial support they need. Thank you.
Disability Benefits / Advice UK
Benefits & Work – advice for claiming what you may be entitled to www.benefitsandwork.co.uk
Cold Weather Payment – for people in receipt of eligible benefits who receive a payment if the average temperature in their area is recorded as, or forecast to be, zero degrees Celsius or below for 7 consecutive days www.gov.uk/cold-weather-payment/overview
Carer’s Allowance financial help for those helping to care for you at least 35 hours per week www.gov.uk/carers-allowance/overview
Citizens Advice Bureaux – advice about how to claim and assistance available to claim, specific to which part of the UK you live in www.citizensadvice.org.uk
Disabled Facilities Grant – a grant to help you convert your home if in need of adaptations www.gov.uk/disabled-facilities-grants/overview
Disability Rights UK – loads of factsheets and advice to download & peruse at you leisure www.disabilityrightsuk.org
Disabled Students’ Allowance – advice for those who need help whilst studying www.gov.uk/disabled-students-allowances-dsas/overview
Employment Support Allowance (ESA) - financial support if you are unable to work due to long term ill-health &/or disability www.gov.uk/employment-support-allowance/overview
HOLD – Home Ownership for People with Long-term Disabilities – help and advice for those who wish to purchase their own home www.ownyourhome.gov.uk/scheme/hold/
Medical Exemption Certificates – access to free prescriptions for those with long term health conditions, primarily: permanent fistulae; hypoadrenalism (for example, Addison’s Disease);diabetes insipidus and other forms of hypopituitarism; diabetes mellitus, except where treatment is by diet alone; hypoparathyroidism; myasthenia gravis; myxoedema (that is, hypothyroidism which needs thyroid hormone replacement);epilepsy which needs continuous anticonvulsive therapy; a continuing physical disability which means you cannot go out without the help of another person; or cancer and are undergoing treatment for: cancer; the effects of cancer or the effects of cancer treatment. Apply for a certificate via your GP or Consultant – ask for a FP92A form. More information available at www.nhsbsa.nhs.uk/1126.aspx
Personal Independence Payment – financial support for the extra costs that having a long term illness &/or disability whether working or not, for those aged 16 – 64 years www.gov.uk/pip/overview
Prescription Prepayment Certificate – helps to spread the cost of prescription charges for those needing multiple items but not eligible for free prescriptions apps.nhsbsa.nhs.uk/ppcwebsales/patient.do
Turn 2 Us – national charity helping people to check their benefit entitlements & source other financial help & grants they may be eligible for www.turn2us.org.uk
Warm Home Discount Scheme – a yearly scheme that can help save £140 off the cost of your electricity bill if eligible from participating suppliers www.gov.uk/the-warm-home-discountscheme/what-youll-get
Watersure Scheme – help for eligible people to pay their water bills, namely those on benefits, those who need to use a lot of water either for medical reasons or because their household has a certain number of school-age children. You also need to be on a water meter or be waiting to have one installed. Apply directly via your regional supplier. More information at www.citizensadvice.org.uk/consumer/water/water-supply/problems-with-paying-yourwater-bill/watersure-scheme-help-with-paying-water-bills/
Watersure Wales – as above for customers of Welsh Water but you don’t have to be on a meter. More information at www.citizensadvice.org.uk/consumer/water/water-supply/problemswith-paying-your-water-bill/watersure-scheme-help-with-paying-water-bills/
Winter Fuel Payment – a yearly scheme for eligible individuals to receive between £100 and £300 tax-free to help pay for heating bills if they were born on or before 5 May 1953 (this date changes each year) www.gov.uk/winter-fuel-payment/overview
Information kindly collated and presented by Shirley Widdop
Although Myelopathy Support aims to be a reliable source of information, we cannot accept any responsibility for the information provided. We also do not assume any responsibility for the use or content of any product or service
mentioned. Myelopathy.org is not responsible for any third-party content referenced, displayed or linked to or on the Myelopathy.org internet site. The inclusion of any link does not imply endorsement by Myelopathy.org of the site. Use of any such linked website is at the user's own risk.
This has been tremendously successful, with our largest survey now completed by over 1000 people with CSM from around the world. This makes it one of the largest ever studies conducted in CSM and certainly the largest on patient perspectives.
Your participation in these surveys is entirely voluntary but if you have the time to participate, please continue to do so. Our currently active surveys can be found here.
Amongst all the feedback you have given Myeloapthy.org over the last few years, one key message continues to resonate; you feel your myelopathy should have been picked up a lot earlier and feel that non-specialists are unaware of the condition.
This is a problem: patients with myelopathy are facing lengthy delays in diagnosis, which likely limit their recovery and a lack of general awareness is probably an important factor.
It highlights the condition, including the significant of delayed or misdiagnosis, the challenges in making a diagnosis, whilst offering information to help doctors make the diagnosis and manage the condition better.
The journal is estimated to be read by 120, 000 doctors each week and we hope this is a useful step in helping change care for the better.
Please feel free to like and share this article, to help promote its audience! Below is how far and wide the article has reached so far, lets push the boundaries, promote the message and help Myelopathy.org grow!
We have had a great response, so far, to this second round survey, with 166 of you taking part (although only 134 finished the survey to the end!). Whilst this is a fairly large number of people, we would love to have many more! This is because, the more people we have reporting their symptoms, the more accurate and significant our results will be. This in turn means that we will be more likely to help improve diagnosis times for patients.
We would be really grateful if more of you could take part in our second-round survey. You don’t need to have done the first round to take part, anyone is welcome! Thankfully, the second-round survey is much quicker to complete than the first round and should take less than 10 minutes.
Reminder of the background:
This project originally had its beginnings all the way back in September 2016 with the Myelopathy Day at the University of Cambridge, where a small group of people described how DCM affected them. There were some fantastic results and insights obtained from that day, giving us a long list of symptoms and ways in which DCM can affect your life. This was eye-opening, as some of the descriptions were totally different to what the medical textbooks say! However, in order to ensure these results represented everyone with DCM, we needed to test the results in a larger group of people, to see if we had missed anything.
To achieve this, we put together a survey (the first round) that went live in January 2016. Over 300 people took part in this round! A massive thank you to you all! We again managed to get some great results, especially regarding which categories patients find most important.
Nevertheless, following this first survey, quite a few of you mentioned symptoms and effects on your lives that we hadn’t previously considered. This meant that we had to add these to our lists and then re-survey everyone, to see how common these symptoms were amongst all DCM patients, to ensure they were also fully representative.
Thank you all in advance for your help, happy surveying!
Therefore, symptoms + MRI scan showing CSCC= CSM = surgery*
However, it is now becoming better understood that as we age, CSCC becomes more and more common. This is often through natural wear and tear changes of the bones and joints in the neck. However, not all people with CSCC have symptoms of myelopathy. This poses a problem. What is the best management plan for those people with compression of their spinal cord but no (or very minor) symptoms of myelopathy? Witiw et al. recently decided to address this very question.
In order to figure out the best management plan for this group of people with cord compression but little or no myelopathic symptoms, Witiw’s group looked at the published medical literature dealing with patients who fell into this category. They found that overall if you have cord compression but no symptoms of myelopathy, the risk of developing myelopathy in the future is relatively low. Therefore, it is usually best not to operate in these cases. Instead, patients should be given clear advice on the symptoms of myelopathy so that they can watch out for them and should be followed-up in 6 months to 1 year to ensure no myelopathy has developed. Furthermore, these patients should avoid high-risk activities that may aggravate their necks such as “downhill skiing or snowboarding, mountain biking, or contact sports”.
The caveat to the above recommendations is that surgery may be indicated for patients with CSCC but no symptoms of myelopathy if they have one or more risk factors for developing myelopathy in the future. These risk factors are:
- abnormalities on electrophysiological testing [sometimes referred to as ‘nerve conduction studies’, these tests show problems in the nerves coming out of the spinal cord down the arms]
- symptoms of cervical radiculopathy [e.g. pain, sensory disturbance, or weakness in a specific nerve pattern down one or both arms]
- T2WI hyperintensity of the spinal cord [white patches on the cervical spinal cord seen on an MRI scan]
Witiw et al. recommend that even if a patient with one of these risk factors does not want an operation right away, it is best to follow them up more closely to monitor for myelopathy or symptom worsening, in which case an operation is the usually the best course of management.
Overall, further work is needed to confirm whether this approach towards asymptomatic people with CSCC is ideal. However, Witiw et al.’s work provides an excellent summary of current medical knowledge of how best to manage this subset of people.
*This is of course a very simplified account; an operation is not appropriate in all cases.
 Christopher D. Witiw, MD, MS, FrancoisMathieu, MD, Aria Nouri, MD, MSc, Michael G. Fehlings, MD, PhD. Clinico-Radiographic Discordance: An Evidence-Based Commentary on the Management of Degenerative Cervical Spinal Cord Compression in the Absence of Symptoms or With Only Mild Symptoms of Myelopathy. Global Spine Journal. Article first published online: December 18, 2017.
Sorry for the long delay in publishing of your latest blog; there has been a lapse since the student editor (a.k.a me a.k.a Shahzaib) has been extremely busy! We look forward to seeing you again next week with another blog, this time about the COMPARISON OF FREE AND FEE-BASED METHODS of internet surveys on CSM! Stay tuned!
"I am an ex Ice-hockey and football player and have been disabled with Chronic Pain Syndrome since September 2008. I have had 2 major surgeries on my arm after developing Compartment Sundrome in June and Nov 2016 and in August 2016, I had surgery on my neck to repair 2 discs between C3-4. I also have been told I have an undiagnosed bleeding disorder which means I have to be seen every 6 months for the rest of my life.
However my main reason for starting this blog is on January 11th 2018 I am having surgery on my neck and am having everything from C1-C7 fused so that I will be unable to move my head...at all. At the moment any movement of my head causes the discs to rub on my spinal cord and I pass out (3-4 times a day at the moment). Naturally I am rather scared of what is about to happen and felt sharing my journey with everyone would help in some way.
My Wife has been a constant rock since I became disabled though we only got married this year (my bad for not proposing earlier) and she has given me so much support and I am sure is just as concerned over what is such an uncertain future.
All we know is I will be in hospital for at least 5 days, and will be in a hard neck brace for about 3 months...minimum."
Today has been a pretty good day and we went out and purchased a new car. Looking for a car with the main thought of me being able to get into the damn thing without bending my head was weird but we made a great choice and we can't wait for it to arrive.
Pain has behaved today apart from a brief twinge earlier though it feels a bit stiff although I also passed out when sat on my sofa. Coming round and seeing your phone on the floor when you were playing a game only seconds before doesn't half feel weird and I'm hoping this is the only instance today. Only time will tell.
"Unfortunately we received a letter from my hospital saying my surgery had been delayed for a 3rd time and is now not due till the 25th January 2018!!
Our Christmas Day was spent firstly with the two of us in bed opening our presents and then greeting her Mum and partner who came to ours for dinner.
Boxing Day has been spent at Lucy’s (my wife) Mums having a lovely family day though unfortunately I have struggled twofold. Firstly with the pain in my neck and back beginning to rise and a possible bad case of cystitis which makes going to the loo absolute torture. I may have to ring the GP tomorrow if I wake up and am still suffering."
"...anyway onto me and my Myelopathy, As I’ve said before pain and blacking out is still a major part of my life with an average of 4 blackouts a day.
A new symptom which I’ve noticed is I get really bad cramp in my left arm, where I had the compartment syndrome which is really painful and I can’t move my hand. This I am sure is down to the Myelopathy but it doesn’t make it any less painful.
The countdown has reached 15 days before I am admitted into hospital before the surgery but I’m trying to not think about that in case we have another postponement."
Next week we resume normal service and bring you our Pillar article, as well as an added bonus article about muscle spasms related with CSM!! Stay tuned!!!
For this year's first post, we have a small poll: imagine you come across Aladdin's lamp and have the chance to make one wish to get rid of one CSM symptom! We are asking all of you what one symptom you would like to wish away. Feel free to comment down below to share the reasoning behind your choices!
It’s easiest to understand why mismatch is a problem using the example of a simpler condition. Imagine you have fallen onto an outstretched hand and come into A&E. We can examine you and establish that your wrist is painful and difficult to move. We take an X-ray and see clearly that you have fractured one of the bones in your wrist. This allows us to:
- Understand the cause of your problem and rapidly diagnose you – we can see there’s a fracture and tell you exactly which bone is broken, hence the pain and loss of movement
- Recommend what care you need and how to give it – we can look whether the bone has moved, how many fragments its broken into and, depending on the bone, tell you whether you need an operation or something less invasive. If you did need an operation, we could determine which one would be best
- Assess your recovery – we can do another X ray after you’ve been treated and check that the bone is healing up nicely
Here, there’s no mismatch – what we see on the images (normally) links directly to what we see at the bedside. Compare this to CSM. There’s nothing as simple and easy as a broken bone to look for, with numerous changes on imaging being potentially associated with myelopathy. Cervical spinal cord compression (seen on MRI scans) was thought to be one of the key imaging changes seen in myelopathy. However, just last month we talked about how most older people have spinal cord compression, but only one or two in a hundred have actual myelopathy (i.e. are ‘symptomatic’). As we have no definite way of spotting it on imaging, it can be difficult to diagnose myelopathy, decide when to offer surgery for it, determine how well our surgery worked or judge how the disease might progress. This is especially problematic as effective surgery depends on early diagnosis, offered too late and spinal cord damage may be permanent. With this in mind, it could be extremely useful if we could find imaging changes that only occur in people who actually have myelopathy (the ‘symptomatic’ group).
Fascinatingly, a group in Hebei Medical University China seem to have done just this. They have discovered several imaging changes that may distinguish symptomatic patients and could even predict the likelihood of myelopathy .
What did this experiment involve?
68 patients with cervical spinal cord compression were examined and divided into two groups. 30 had no signs or symptoms of myelopathy (the ‘asymptomatic’ group) and 38 were symptomatic for myelopathy (nerve damage, changes in reflexes, muscle spasms etc). The researchers then looked at the patients’ X-rays, CTs and MRI scans and tried to identify any differences in imaging between the two groups.
What were the results?
Three types of imaging change were found to be significantly more common in the symptomatic group.
- Torg ratio - the ratio of the cervical canal width to the width of the cervical vertebra - like a more specific measure of spinal cord compression. Symptomatic myelopathy patients were found to have smaller Torg ratios than asymptomatic patients.
- High intensity signal in the spinal cord on T2-weighted MRI - we’ve explained this before, but essentially it’s thought to be a sign of fluid build-up in the cord, which can cause damage. High signal intensity was associated with myelopathy
- Cervical segment instability – a measure of how well the cervical vertebrae line up. Low stability was associated with myelopathy.
What might this mean?
This could be a chance to overcome the clinical-radiological mismatch in CSM. Looking out for these three imaging changes could help us identify those patients who actually have myelopathy and are in need of surgery from those who don’t, making sure we operate in time. Furthermore, they could help us confirm when asymptomatic patients have progressed to a symptomatic stage. Potentially, they could even help us see how well our operations have worked, by seeing if the changes are reversed after the procedure!!
What were the weaknesses of this study? What could be next?
The main weakness here was the small number of patients used. The next step is to continue it in other hospitals, to see if the results are supported or if other important imaging changes can be found. However all of this seems extremely promising for the future of CSM, especially in terms of early diagnosis and choice of treatment!!
Join us next week for our Christmas Special article (exciting!!!) as well as to vote in our very own Christmas Poll. Merry Christmas to everybody!!!
- Cao, J. M. et al. Imaging Factors that Distinguish Between Patients with Asymptomatic and Symptomatic Cervical Spondylotic Myelopathy with Mild to Moderate Cervical Spinal Cord Compression. Med. Sci. Monit. 23, 4901–4908 (2017).
- Martin, A. R. et al. A Novel MRI Biomarker of Spinal Cord White Matter Injury: T2*-Weighted White Matter to Gray Matter Signal Intensity Ratio. Am. J. Neuroradiol. 38, 1266–1273 (2017).
- Song, K.-J. et al. The relationship between spinal stenosis and neurological outcome in traumatic cervical spine injury: an analysis using Pavlov’s ratio, spinal cord area, and spinal canal area. Clin. Orthop. Surg. 1, 11–8 (2009).
Where's the proof?
So, experimental proof lies in research conducted in Egypt , where the scientists took patients with mild CSM and at random, gave half of the patients Cerebrolysin® and half a placebo, and followed the patients over 6 months . No patients in this series received surgery. They found that patients taking Cerebrolysin® were more likely to show improvement in their CSM after 6 months, and more likely to show a greater amount of improvement.
What's the catch?
There are a number of cautions that must be attached to these results:
- Cerebrolysin ® has not been found of clear benefit in other conditions such as dementia or stroke  , despite multiple, large well conducted studies
- This trial considered non-operative management of myelopathy. And the short-term improvements even in the placebo group, are a little unexpected.
- The researchers were not blinded to the treatment patients were receiving i.e. when assessing a patient, they knew whether they were taking Cerebrolysin ® or placebo.
However, these results are interesting. Cerebrolysin ® has shown promise in animal studies and some human studies; and just because clear efficacy has not yet been shown in humans yet, does not mean it isn’t of benefit.
So, a small study, with limitations, but of interest! We look forward to seeing further developments in this area; who knows, this could turn out to be a wonder drug! Comment down below if you wish to share your experience with this drug, or any others you've found helpful in dealing with CSM symptoms.
Next week, we're going to tell you more about what sort of factors doctors might look for in imaging studies to decide whether CSM is going to be symptomatic or not - stay tuned!!
What was the experiment about?
Experiments  on spinal cord injury animal models has shown that if animals experience bouts of breathing low levels of oxygen, combined with rehabilitation, then they recover greater physical function. So, the group from America decided to put this into practice in patients with chronic spinal cord injury. In patients with chronic (i.e. a long time after their injury) spinal cord injury, the capacity for improvement is thought to have plateaued.
The group took 6 patients and randomly assigned 3 to perform hand exercises for 1.5minutes whilst breathing low level oxygen and the other 3 to perform hand exercises at normal oxygen levels.
Patients breathing low levels of oxygen had significantly greater hand function after treatment for 5 consecutive days, than those who did not. The group hypothesize that the low levels of oxygen stimulates the release of growth factors, that, when coupled with rehabilitation, drive spinal cord repair.
What do these results tell us?
These results are very exciting. However, there are a number of limitations with this study and further evaluation is still needed, especially since this is an idea in its early stages - so we are by no means advocating you stop breathing anytime soon!
 Trumbower, R., Hayes, H., Mitchell, G., Wolf, S., & Stahl, V. (2017, September 29). Effects of acute intermittent hypoxia on hand use after spinal cord trauma; a preliminary study. Neurology, 89(18), 1904-1907. Retrieved from pubmed.gov: https://www.ncbi.nlm.nih.gov/pubmed/28972191
The Project’s Background:
Our project had its beginnings all the way back in September 2016, just before I joined the team, with the Myelopathy Day at the University of Cambridge, where a small group of people described how DCM affected them. There were some fantastic insights obtained from that day, giving us a long list of symptoms and ways in which DCM can affect your life. This was eye opening, as some of the descriptions weren’t signposted in medical textbooks! We also agreed on a way to group these symptoms and effects together into categories. However, in order to ensure these results represented everyone with DCM, we needed to test the results in a larger group of people, to see if we had missed anything. To achieve this, I put together a survey that went live in January 2017. Since then over 300 people have taken part! A massive “thank you” to you all! We again managed to get some great results, especially regarding which categories patients find most important. I have been fortunate enough to present this work to both national and international audiences at Oxford and Magdeburg, Germany, respectively.
Where are we up to? How can you help?
Nevertheless, following this first survey, quite a few of you mentioned symptoms and effects on your lives that we hadn’t previously considered. This means we need to add these to our lists and then re-survey everyone, to see how common these symptoms are amongst all DCM patients, to ensure they are also fully representative (for anyone interested, we call this process a DELPHI study). If after completing the first survey you agreed to be contacted again, we will do so by email (and you won’t have to complete those tedious demographics questions again!). However, if you haven’t already taken part, there will be a version of the second-round survey for those who didn’t do the first one online at Myelopathy.org. The second-round survey will be much shorter to complete (fortunately), as we no longer need to ask about which categories are most important to patients.
Thank you all in advance for your help!
However, what about the less well recognised or associated problems? For example, difficulty sleeping, anxiety and depression, and especially headache. As the main treatment for CSM is surgery, the impact of an operation on the well-recognised symptoms is well known, although not entirely predictable and understood. However, we do not know how surgery on CSM in the neck can impact upon headaches caused by CSM. A team of researchers in Beijing, China took it upon themselves to investigate this .
What did they do?
The researchers examined 108 cases of patients with CSM who complained of headache. Each patient was then given an operation using one of three surgical techniques: anterior cervical discectomy and fusion (ACDF), total disc replacement (TDR), or laminoplasty. The patients were then re-assessed at 25 and 145 months after their operation. The team discovered that roughly 4 out of 5 patients (80%) found that the operation improved their headache, often even making it go away all together! The other 1 out of 5 patients (20%) did not get any benefit from the surgery for their headache. However, it is of course possible that these patients’ headaches were not related to their CSM in the first place. The researchers also found that all three types of surgery showed the same improvement in headache; no approach was dramatically better than the other two.
So, what does this all mean?
Well, although surgery is not currently indicated for treatment of headache alone, relieving pressure on the spinal cord does seem to improve CSM-induced headache, which is promising news! Based on this single study, if you have a headache caused by CSM then you stand a good chance of seeing some improvement of this headache after an operation on your neck. Of course, more research is needed to confirm these findings, as this is almost a stand-alone project – however, it does signal some hope to those suffering from cervicogenic headaches!
 Sun et al. Effect of different surgical methods on headache associated with cervical spondylotic myelopathy and/or radiculopathy. BMJ Surgery. 2015; 15:105.
If we took a hundred random individuals, over the age of 40 off the street, and performed a cervical MRI scan, as many as 56 would have imaging changes associated with myelopathy. However, fewer than 1 or 2 would actually have spinal cord injury and therefore actual myelopathy. These numbers may not be exact (although they were found in a recent study), but you get the gist. 
There has only ever been one study looking at this by Joseph Bednarik. In that study they found that, given time, as many as 10 of the remaining 54 would get myelopathy .
In a follow up study published this month , Dr Bednarik has been looking at whether we can predict which of those 54 patients will develop myelopathy. They found that if a patient had had cervical radiculopathy, or electrophysiological signs of cord problems or more significant compression features on their MRI, they were more likely to develop myelopathy.
These findings need to be confirmed in larger studies, but they are interesting. For one, it suggests that features of cord injury (electrophysiology) come before any symptoms of myelopathy! We know that catching myelopathy early is important, but this is going to make things even more difficult!
1) Adamova, B., Kerkovsky, M., Kadanka, Z., Dusek, L., Jurova, B., Vlckova, E., & Bednarik, J. (2017). Predictors of symptomatic myelopathy in degenerative cervical spinal cord compression. Brain and Behavior, 7(9), e00797.
2) Bednarik, J., Kadanka, Z., Dusek, L., Kerkovsky, M., Vohanka, S., Novotny, O., et al. (2008). Presymptomatic spondylotic cervical myelopathy: an updated predictive model. European Spine Journal : Official Publication of the European Spine Society, the European Spinal Deformity Society, and the European Section of the Cervical Spine Research Society, 17(3), 421–431.
3) Kovalova, I., Kerkovsky, M., Kadanka, Z., Nemec, M., Jurova, B., Dusek, L., et al. (2016). Prevalence and Imaging Characteristics of Non-Myelopathic and Myelopathic Spondylotic Cervical Cord Compression. Spine.
Bright and early on 20th September 2017, the Myelopathy.org team left Cambridge on an exciting expedition. We set sail for the Titanic Hotel, Liverpool where a national neurosurgery conference was taking place. This was none less than the Autumn Meeting of the Society of British Neurological Surgeons. It was an opportunity to present some of your insights and continue to promote awareness/research within this field.
The conference was widely attended by neurosurgical health professionals from across the UK, as well as by guests from the Continental Association of African Neurosurgical Societies.
The Myelopathy.org team presented a series of talks and poster presentations highlighting our most recent work:
1) There is a delayed diagnosis in Myelopathy [1,2]
2) Current surgical decision making focuses on MRI features, is that appropriate? 
3) Potential for Smart Technology to change the way we assess Myelopathy 
But of course a big thanks to you our community, because much of the information this is coming to light has come from you!! So keep participating and hopefully we can make a difference.
2. J. Tempest-Mitchell et al. Qualitative MRI reporting in Cervical Spondylotic Myelopathy influences patient referral to spinal services
3. B.Hilton et al. MRI compression is the focus of surgical decision making in Degenerative Cervical Myelopathy
4. O.Mowforth et al. The use of smart technology in patients with Degenerative Cervical Myelopathy
Images courtesy of Radiopaedia.org
MRI imaging is the mainstay of diagnosis of patients with CSM. Whilst the MRI can described findings associated with myelopathy, there has been a lot of debate as to whether it can tell you how bad your myelopathy is, and whether or not you would respond to surgery.
In this regard, changes within the spinal cord itself have been a major focus. MRI images are black and white. When you undergo a MRI scan there are two principal image types that are produced 'T1' and 'T2' images. The sequences highlight different features, and therefore what is white will differ from one sequence to the next.
A group from North America (1), in the largest such study to date, having been looking specifically at changes within the spinal cord. Their theory was that the amount of spinal cord damage, and therefore the severity of disease and likelihood of improving after surgery, related to this sequence of changes. I.e. Normal cord was better than a white spot, but a white spot with corresponding blackness on T1 was worst of all. The white spot is thought to represent oedema, whereas the blackness loss of spinal cord tissue.
The authors analysed over 400 MRI scans of patients who went on to have surgery for CSM. Just as they thought, they found that these image changes did relate to the severity of myelopathy, and likelihood of responding to surgery.
More specifically, they found that the 'black' low signal on T1 images was the most important feature; most likely to be found in more severely affected patients, who responded less well to surgery. A 'white spot' on its own was only very slightly worse than normal looking cord, however 'white spots' at multiple levels was associated with more severe myelopathy.
This is a high-quality study, involving a large number of patients from across the globe. This is a very interesting study and moves the field forwards. The clinical relevance of a 'white spot' was uncertain, and a topic of constant debate; some studies had shown it was a sign of bad myelopathy, where as others that it was not indicative of severity (2). The finding here of the significance of one vs many white spots may explain these previously inconsistent findings. Regardless the relative, greater importance of low signal (black) on T1 images is new.
These image findings are not the be all and end all; some patients with spinal cord changes on their MRI do very well with surgery and vice versa. These findings therefore, at least for now, are only a guide.
2. L.Tetreault et al. A Systematic Review of MRI Characteristics that Affect Treatment Decision-Making and Predict Clinical Outcome in Patients with Cervical Spondylotic Myelopathy. Spine August 2013
We speak to fellow sufferer and artist Margot Miller from Putney, Vermont. USA. Margot was diagnosed with myelopathy in August of 2007 at the Mayo Clinic in Jacksonville Fla. where she underwent four emergency spinal fusions. "I'd say I'm traumatized by them and that they happened without a second to plan or think about surgery, By the time the MRIs came back, there was no go on home and schedule this, your being admitted.
Margot tells us that having myelopathy has affected every aspect of her life." I could no longer do my job. I was a Real Estate developer and agent, and an artist part time. I could no longer sell Real Estate. Most prominently, I lost all the function in my left arm which I'm still trying to deal with today. I can no longer ski, swim laps, play golf, knit....some of the things I really did enjoy.
This did not deter her in anyway ,she now concentrates her determination and drive into her Art and runs a full service Art Studio in Putney. I show my work in museums and galleries all over the country and beyond. I sell prints of my work, which I love to do. I have 3 different sizes and use all kinds of paper, linen, canvas, metallic, gloss, you name it. I've taught classes, I do commissions. Plenty of charity work and open studios.
Margot explains that being diagnosed with myelopathy can have so many negatives for example "I can't keep up with my friends or family, they don't understand that I can't keep up with their schedules. sometimes the pain can be overwhelming, painting helps me in the middle of the night when I'm in pain. It seems to subside a great deal when I really get into it.
There is also positivity to my diagnosis my paintings have gone further than I could of dreamed. Museums I never thought I'd get to. Now I have the opportunity to raise money for Myelopathy research through my artwork, I do a lot of charity work for years after I was injured I ran a project called the Art for Comfort project. I installed art in homes, hospitals and hospice. I still do that today. I felt it would comfort patients and it has.
Margot explains "it felt as if it was a miracle when I came across myelopathy.org "I had never come across a brochure, or pamphlet at any medical facility I'd ever been to . No explanation from any Doctor . Of this disease. "at last there was researcher and the articles , I read everything. I asked if they had a support group, and was lead to the group on Facebook. It has helped more than words can say. I've never met one person with this disease".
Meeting the team at myelopathy.org , has not just given me the opportunity to raise money for this worthy cause but It has also given me a sense of purpose. Margot has not just stopped at raising money for myelopathy she is now part of the support group as a very active moderator, "I love being part of the team at Myelopathy support. It's an honour, Anyone who is Ill, wants to feel useful, and I do to. I've met some smart, funny, wonderful people with positive attitudes. It can't help but to rub off on you.
We would like to thank Margot for her very kind proposition in helping us raise money by selling her wonderful art work, for more information regarding Margot's Art work please visit Miller Studios
The Facebook group started back in early 2015 on the back of Iwan personal myelopathy awareness campaign. Iwan was diagnosed with Cervical Myelopathy at the end of 2014 and felt terribly alone with his diagnosis which was accompanied by very little information.
He started searching the Internet for information. Whatever facts he came across he shared on his Facebook awareness page called Spinal Myelopathy. Within a few months it began taking off and gathering Likes on a regular basis. He then decided to expand his awareness campaign through social media and before long a Twitter account was also gaining followers.
At first Iwan says he didn’t even think of developing a Facebook support group – it just happened on the back of the Facebook Community page. People started asking questions and engaging with each other on the awareness page posts. The main problem was it wasn’t the correct platform for people to discuss personal medical details about themselves.
This prompted Iwan to search for Cervical Myelopathy groups. There was an abundance of canine myelopathy groups but nothing really dedicated to Cervical Myelopathy. So, he launched the Facebook Myelopathy Support group with private settings creating a suitable platform for myelopathy sufferers to engage with each other and discuss their problems.
Iwan’s work coincided with the launch of the myelopathy.org website by Dr Mark Kotter and Dr Ben Davies. It was a bit of being in the right place at the right time. Iwan says he was oblivious of the launch of myelopathy.org until the day he received a message from Dr Ben Davies asking him if he would be happy to share his story Iwan's story on their new website.
At first Iwan felt reluctant. He says: “I didn’t want people to read it and think I had done it out of self-pity. That just wasn’t me. But I also knew this could also be a great opportunity to see the awareness campaign grow.”
After a few days of thinking, and a message from Ben saying that Iwan could put a link for his myelopathy awareness page in the My Story section on myelopathy.org, Iwan finally agreed. He says: “It was the perfect platform to launch the awareness campaign and to reach out to as many people as I possibly could.”
Iwan’s myelopathy awareness campaign really gained momentum and it also increased visitor numbers to the myelopathy.org website. At last people had the information and support they needed – a dedicated website for cervical myelopathy combined with a very active Facebook myelopathy support group.
Iwan was then invited to meet Mark and Ben but unfortunately had to decline the offer due to his worsening symptoms and inability to travel to Cambridge University. However, in 2016 just a few months after surgery, Iwan met up with Ben and Mark and other myelopathy sufferers at the University of Cambridge for the first CSM Day which was a great success.
He says: “It was great finally to meet likeminded people who had the same passion and determination for this important cause alongside other fellow sufferers. At last we had all found someone who would listen to us and answer some of our questions.”
Within a few months of their first meeting and a few discussions on Skype, it was decided to combine the two campaigns. “I think over the moon would be an understatement,” says Iwan. “It was a chance to turn my diagnosis into something positive not just for myself but for all the other sufferers out there.”
In 2016, the myelopathy.org Facebook community and the Spinal Myelopathy awareness campaign came together as Cervical Myelopathy for the launch of the support section at myelopathy.org and is overseen by Iwan. There are now more than 600 + members in the support group and over 1100 Likes on the community page. The numbers are going up daily. “The important factor is that people are now getting the help and support they need and also the information that they require at their fingertips. Hopefully they no longer feel alone like I did when I was first diagnosed,” says Iwan.
His myelopathy means Iwan is not able to sit in front of his laptop for long and some days he can’t do it at all. Fortunately, he now has help from the team of admins and moderators who all suffer from myelopathy and contribute as much as they physically can.
Iwan says: “Within the support group their work is paramount. I’m so grateful for the help they give. I really couldn’t do it without – Jillian, Shirley, Delphine and our newest recruit Margot. I thank you and I’m sure the other members would thank them too.”
There are bigger plans in the pipeline for our myelopathy campaign. For example, we have just launched out Cervical Myelopathy Community at HealthUnlocked and now we are also on Instagram we are forever looking at expanding through social media. We are also looking at providing an offline support group in the not too distant future. 2017 is an exciting time for our overall campaign with so many things in the pipeline ready for development so watch this space and don't forget to signup for our new newsletter coming out in the next following weeks
Headaches are a common problem in everyday life. Some experts believe that there is a type of headache related to wear and tear in the neck, termed a 'Cervicogenic Headache'. Dr Lavin, Neurologist, has previously written an article for Myelopathy.org on the subject. In this headache, symptoms are often intermittent, related to posture, and affect one half of the head.
Anecdotally, many of our Myelopathy Support members report headaches.... so perhaps it is not as uncommon as first thought? Room for further investigation certainly....
They identified one such study. In this study, the researchers looked at the diagnostic criteria for Cervciogenic Headache, and compared how predictive of the condition each component was with respect to other forms of headache (such as Migraine).
Of the various features, the following were found to be associated with Cervicogenic Headache more than 75% of the time, compared to other headache conditions. (E.g. If 100 answer yes to statement 1, 75% will have a Cerviogenic Headache).
Major Symptoms and Signs
1) Pain triggered by neck movements and/or sustained awkward head positioning
2) Pain elicited by external pressure over the GON ( a nerve in the neck) or over C2-3 on the same side as the headache is experienced.
3) Shoulder and arm pain of a rather vague, non-radicular nature on the same side as the headache
4) Pain episodes of varying duration or fluctuating, continuous pain
5) Moderate, non-excruciating pain, usually of a non-throbbing nature
6) Anaesthetic blockades of the GON or C2 nerve root
7) Sustained neck trauma a relatively short time prior to the onset
Less commonly associated features
8) Rarely occurring nausea, vomiting, and XII photo- and phonophobia
9) Ipsilateral oedema and, less frequently, ̄ushing, mostly in the periocular area
11) `Blurred vision' in the eye ipsilateral to the pain
12) Difficulty on swallowing
The criteria are designed to be assessed by a doctor and not self reported by patients, but they may be of interest as we are aware that headaches are a common topic of conversation at Myelopathy Support.
(2) Antonaci, F., Ghirmai, S., Bono, G., Sandrini, G., & Nappi, G. (2001). Cervicogenic headache: evaluation of the original diagnostic criteria. Cephalalgia : an International Journal of Headache, 21(5), 573–583. http://doi.org/10.1046/j.0333-1024.2001.00207.x
| || |
From the stories shared with Myelopathy.org, to the discussion on Myelopathy support, to some of our survey data - we can be clear that many patients face delays in reaching a diagnosis, which could affect their longterm outcomes.
It is easy to point out a problem, but it is far more difficult to solve it. You see Myelopathy shares symptoms with many other conditions, so how can we help doctors find Myelopathy?
In this study, the Japanese group compared the answers to a number of questions they developed between patients with myelopathy, and patients with neck pain without myelopathy. Based on these results, they were able to develop the questionnaire below. If you score 6 or more, you have a 60% chance of having myelopathy. But the assessment will fail to diagnose 7% of patients.
(2) Kobayashi, H., Kikuchi, S., & Otani, K. (2010). Development of a self-administered questionnaire to screen patients for cervical myelopathy
The latest expert and patient articles