by S. Ahmed
We look forward to hearing from all of you - remember this is just a clinical sign that may not be currently in the textbooks, so your contribution, as always, is valuable!
by M. Stewart
Why is diagnosis of CSM so important?
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.
What is diffusion tensor imaging (DTI)?
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
What is machine learning and how can it help us read DTI scans?
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:
1 It’s better to look at some parts of the cord, rather than the entire surface
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.
Figure 5 – Earlier work told the computer to look at the entire cord to spot CSM (shown left). The results of this latest experiment suggest it would be most effective to look at just 60 voxels worth of cord, in the lateral portion of the cord’s white matter (shown right). Red lines show the area the computer is set to analyse. Image adapted from teachmeanatomy.info.
2 The edges of the cord are the key for spotting CSM
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 .
3 Computers can spot CSM most accurately just by when they look at just one aspect of the DTI
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.
What does this mean for CSM patients?
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!!!
In this blog we cover the financial burden that a chronic condition such as myelopathy can bring. This week we speak to Shirley Widdop, an ex-Nurse that had to give up employment after being diagnosed with Cervical Myelopathy in 2012. Shirley is a very active member and an admin for myelopathy.org Facebook support group Myelopathy Support and has assisted a number of members that have found themselves in the same situation and helped them through the tangled web of the UK benefits system.
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
Attendance Allowance – a disability allowance for those with long term illness &/or disability aged 65 year or over www.gov.uk/attendance-allowance/overview
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.
Founded around 3 years ago Myelopathy.org has continued to steadily grow to reach a global community of CSM sufferers, professionals and their supporters. As part of our goals to support research to help improve the lives of patients suffering with CSM, we have been allowing researchers to ask questions of our community to help them better understand the condition.
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.
The findings of the survey are yet to be fully analysed, but the researchers have recently published an article showing the key role of Myelopathy.org in reaching patients with CSM.
We are very proud to have been a part of this process and we hope you are too! This article highlights that we, the Myelopathy.org community, are not simply passengers but a force with a voice driving progress.
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.
1. Davies et al. (2018). Lessons From Recruitment to an Internet-Based Survey for Degenerative Cervical Myelopathy JMIR Res Protoc 2018;7(2):e18
As part of Myelopathy.org's commitment to raising awareness, with our partner researchers at the University of Cambridge, have produced an education article for the BMJ (British Medical Journal), which has been published today: Easily Missed: Degenerative Cervical Myelopathy.
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!
Where are we up to?
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.
Have you shared you experience of DCM? If not, we would love to hear from you! The survey can be found on the Myelopathy.org website, under the research tab, in the survey section or directly by following this link: Click here for Round 2 DCM Survey!
How can you help?
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!
by B. Hilton
Cervical spondylotic myelopathy (CSM) is a clinical diagnosis. By this, we mean that CSM is not diagnosed on the basis of an MRI scan alone. Rather, it is the combination of clinical signs and symptoms of myelopathy with an MRI scan showing cervical spinal cord compression (CSCC). Symptoms of myelopathy include: limb weakness, numb and clumsy fingers, instability and falling over, bladder and/or bowel disturbances. CSM can then be managed with an operation to decompress the spinal cord, which will help to prevent disease progression and hopefully give some symptomatic improvement.
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:
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!
This week we have a small change of plan; join us in wishing Frank Dutton, a CSM sufferer, the very best for his surgery happening on the 25th of January, which consists of a full fusion from the C1-C7 vertebrae. Following are a few extracts from Frank's blog posts, which he puts up as a countdown to his surgery. Read on for his story...
29 days before surgery:
"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."
27 days till surgery:
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.
1 month till revised surgery date: Christmas Day...
"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."
15 days till revised surgery date:
"...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."
A big, heartfelt "Good Luck" from all of us here at myelopathy.org, hopefully your surgery goes as well as possible! Feel free to comment messages of support down below!
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!!!
From all of use here at myelopathy.org, a very Happy New Year to all our readers worldwide! We wish you all the very best for this year, and our thoughts are with those suffering from CSM: we will keep bringing you any breakthroughs related to the condition as always!
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!
Stay tuned for a post later this week/early next week summarising the general concept and history associated with CSM, as well as a patient-story blog! Have a great week!
by M. Stewart
One of the most unusual things about CSM is what we call the “clinical radiological mismatch”. This means that there is no clear link between the clinical picture (the pain and disability that you feel, and the abnormal neurological signs we see in the clinic) and the radiological picture (what we see when we take images of your spine using X-rays and MRI). Some people can have very little abnormality on imaging, but have disability indicating severe myelopathy. Others can have major changes in their spine on imaging, which we might expect to give myelopathy, but have few or no symptoms.
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:
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.
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!!!
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