info@myelopathy.org

Visit Us On FacebookVisit Us On TwitterVisit Us On InstagramVisit Us On YoutubeCheck Our Feed

A Message from Everyone at Myelopathy.org

A Message from Everyone at Myelopathy.org

We are living in unprecedented times which is making many of us feel quite scared, nervous and anxious about our health as well as that of our families and friends.

We wanted to reassure you that Myelopathy.org is run by a dedicated group of volunteers based all around the UK and therefore we are used to working with each other remotely. This means that during these uncertain times we can continue to work together in the way we are used to around our various family and other commitments, to raise awareness of Cervical Myelopathy. That said, due to the current situation many of these activities will likely slow in the weeks and months to come, or will be postponed.

In the meantime, keep talking to each other on our support group, keep in touch with your family, friends and neighbours, and lean on them for help and support. Stay positive, and try to meet people for a virtual cup of tea online instead. Please don’t suffer in silence, we’re here for you.

If there is a question we can help with, get in touch and we will try to seek some clarity for you.

Stay safe, with very best wishes,
Everyone at Myelopathy.org

Stay positive and enjoy this beautiful wildflower meadow in the summer photo
Photo by Kristine Cinate on Unsplash

Updated Information on Coronavirus (COVID-19)

THIS SUMMARY IS SUBJECT TO CHANGE AT SHORT NOTICE AS THE GOVERNMENT RELEASES ITS OWN UPDATES – THIS SUMMARY WAS LAST UPDATED MONDAY 23RD MARCH 2020

 

Dear Friends,

These are extraordinary times; coronavirus (COVID-19) represents a nearly unprecedented challenge to our healthcare systems and a danger to all of us.

An important question that we need to contemplate is how will coronavirus (COVID-19) affect individuals with Cervical Myelopathy?

At the moment, there is no data related to coronavirus (COVID-19) and Cervical Myelopathy. The latest Public Health England guidance states that, in addition to people over 70, anyone with a chronic neurological condition is at increased risk of a severe illness from coronavirus (COVID-19).

I think we need to err on the side of caution and consider individuals with Cervical Myelopathy to potentially be at an increased risk. I therefore urge you to read and follow the latest advice and guidance published in your home countries.

The UK Government and the NHS provides comprehensive information relating to the coronavirus (COVID-19) outbreak and in particular is urging any individual in a group which is identified as being at increased risk of a severe illness from coronavirus (COVID-19) to follow the social distancing advice. In addition, the US Centre of Disease Control provides the following guidance for people at increased risk which you may find useful.

Our primary concern is everyone’s health and well-being.  We understand that there is a lot of uncertainty at the moment and that this can be unsettling.  We will provide as much information as we can, as soon as we can.

Our staff are working from home so please do get in touch via email or on our Facebook Support Group.  We are continuing to work to support the Cervical Myelopathy community in these challenging times.

Stay safe and we will be in touch again with further updates.

With best wishes,
Dr Mark Kotter (Founder of Myelopathy.org)

Meditation and Myelopathy

Slowly my myelopathy symptoms increased day by day and it quickly came to the point where I developed a new muscular twitch or nagging pain daily. I wasn’t getting much luck with my pain relief and when I had a terrible day, which was nearly every day pre-operative, there was no other option but to increase my assortment of medication. This left me feeling like a walking zombie on autopilot with a terrible brain fog. I couldn’t think straight, let alone perform the simplest of tasks which, left me confined to the house more often than not.

Man sitting staring at the sunrise

Trying to find a comfortable position to be in got harder too as sitting upright for a long time without my head supported was quickly becoming an impossible task. One afternoon I went upstairs, placed my cervical pillow on the bed and laid down. I had recently bought a phone/tablet holder, the type that you attach to the bed, as I wasn’t be able to hold my phone or tablet without my arms and hands giving way and the device suddenly face planting me! Holding anything which incorporated the use of my neck and shoulder muscles resulted in a muscular burn very similar to the one you get when lactic acid builds up in your muscles during an intensive workout

That day I logged onto my phone and for some reason my YouTube app was open and the first video on my home screen was meditation music. I put my earphones in and scrolled through the list as the muscles in my arms strained painfully from this action alone. I chose one of highly viewed relaxation music videos, adjusted my cervical pillow and positioned myself as comfortably as I could. I gazed up at my phone screen as the meditation music played and within a few minutes my eyelids and body felt heavy. I felt as if my whole body was slowly sinking into my mattress.

When I eventually opened my eyes, it felt like I had been lying there for a few minutes but in fact I had been there for nearly an hour. What struck me immediately was that I was in considerably less pain without needing copious amounts of pain medication which, was a real bonus. However, my symptoms seemed to get worse as the day went on, my head felt like a giant bowling ball and my neck muscles were constantly struggling as if they could not cope with the weight of my head. Hence, my evening relaxation sessions listening to relaxing music became a regular thing. Stress also has a physical effect on muscles especially those in your neck. As you tense up, the tightness in your neck muscles can contribute to neck pain especially if you have myelopathy. So, helping your neck muscles to relax also helps with pain relief.

I started looking deeper into the benefits of meditation and mindfulness because of the positive results I was experiencing. I moved on from relaxation music and started listening to guided meditation sessions instead. There are plenty of free ones on YouTube however, they vary in length of time and I would highly recommend you start with a short-guided meditation of around 5-10mins a day. You can then gradually increase this to suit your lifestyle when you get more used to the techniques. Just as rest and recovery are vital for your body the same goes for your mind and meditation is exactly that, an opportunity to put the hustle and bustle of daily thoughts and stresses to one side and give your mind a well-deserved rest.

The meditation that I find most beneficial is often referred to as mindfulness but to me that infers a mind full of thoughts whereas meditation is the total opposite. It is also described as a practice to quieten the mind, but it is almost impossible to quieten the mind totally without years of training so this wouldn’t be my choice of description for the meditation that I do. During a session thoughts will drift in and out of your mind, the intention during meditation is not to get involved with the thoughts or to judge them, just to make a mental note of them, and let them pass. I quickly realised that meditation didn’t just help me with pain it also helped me mentally to learn to live with myelopathy and its many challenges.

There are many other ways to meditate but this technique is what I use and find most beneficial for myself. Also, I feel I should just mention that you don’t need to meditate in the lotus position. I do it sitting up with a neck support and also lying down. The important thing is that you have to make your body comfortable before you can begin. My other advice would be not to force a meditation session or expect instant benefits, like everything practice makes perfect and make it enjoyable, not a chore. Eventually treat it as a daily routine, a time out for your mind from the busy world outside because your mental health is just as important as your physical health.

Basic Meditation Technique

Find a comfortable position. You can either be seated on a chair or on a bed. Keep your back upright if you can (but don’t force it). Notice your body and relax. Take a deep breath and focus on the experience.

Feel the natural rhythm of your breath. Notice the air temperature in and out. Let your breath flow naturally. You don’t need to do anything. Your body knows how to breathe on its own — don’t force it. Notice how your chest expands and contracts. Focus on your body — one breath at a time.

You might get distracted at some point. That’s okay. Don’t judge yourself. You can say “thinking” and let your thoughts flow naturally. Reconnect with your breath. When the five minutes are up, focus on your breath one more time.

A technique that I find very useful for when I get distracted is that I visualise that distraction as a bubble and as it enters my mind while meditating, I then imagine myself popping that bubble before it can manifest into a thought.

Practicing this exercise daily will improve your breathing but also bring calmness and more awareness to your life.

Scientific studies have shown that there is a long list of benefits of daily meditation, it costs nothing to do and you can do it from the comfort of your chair or bed, I’ve even done it on a train journey! There are some great apps you can use, one of my favourites is Inside Timer where you can log your activity. There are some great free guided meditations on there that I would highly recommend. To further convince you to give it a try we even have a myelopathy group on there that you can join. So why not give it a go, you really have nothing to lose and everything to gain.

 

Iwan 27.2Kminutes 529 Total days

The Challenge for Myelopathy Sufferers

The greatest challenge facing those with degenerative cervical myelopathy is understanding and expressing their symptoms and to have a medical practitioner recognize and diagnose the condition early. In my experience neck pain is most often the earliest symptom patients can distinguish and express effectively to others but can often be disregarded by patients until other symptoms present.

Other symptoms such as motor difficulties are harder to recognise, describe and understand until symptoms have progressed, leading to difficulty walking or falls. Myelopathy.org has been a great resource for my patients to understand their diagnosis and the reason for their symptoms. Educational efforts for the general public and medical practitioners will hopefully allow for earlier diagnosis and better outcomes.

Every day in my clinic, people with degenerative cervical myelopathy considering surgery ask me how long it will take to recover and if they will ever get back to ‘normal’. I explain the positive AO Spine data for early surgery for degenerative cervical myelopathy, however the patient stories of journeys to post-operative recovery on myelopathy.org are more relatable for my patients.

I look forward to myelopathy.org growing and providing a voice and resource to people at all stages of their journey with degenerative cervical myelopathy.

About Dr Rory Murphy

Dr Murphy is a neurosurgeon and assistant professor at the Barrow Neurological Institute at Barrow Brain and Spine specializing in complex spine surgery, cervical myelopathy, tumours and spinal cord injuries.

Barrow Neurological Institute is the world’s largest dedicated neurosurgical centre and a leader in neurosurgical training, research, and patient care. Dr Murphy has received numerous prizes from American Academy of Neurosurgery/ Congress of Neurosurgery and published in Nature, Neurosurgery, Spine and The Journal of Neurosurgery. Dr Murphy and his team are participating in a number of international trials aiding patients with cervical myelopathy and acute cervical spinal cord injuries.

Dr Murphy is a site PI for the Department of Defence funded Systemic Hypothermia in Acute Cervical Spinal Cord Injury Trial and was a primary investigator on a Missouri State Spine Injury Research Program project and has been funded by the McDonnell Neuroscience Centre.

Myelopathy.org Chief Scientist Wins International Award

Dr Fehlings wins the 2019 Ryman Prize​

We are very proud to announce that Dr Michael Fehlings, head of the Scientific Advisory board for Myelopathy.org, was this morning awarded the Ryman Prize in recognition of his long career dedicated to helping older people suffering from debilitating spinal conditions.

The international jury chose Dr Fehlings from a strong field of contenders for his pioneering work on Degenerative Cervical Myelopathy (DCM), which is the most common form of spinal cord injury. As well as working on the treatment and management of DCM, Dr Fehlings has worked tirelessly to raise awareness of the condition within the medical profession.

The director of the Ryman Prize, David King, said “Dr Fehlings is a surgeon, a researcher and a teacher who has had a major impact on how patients are managed, and his work over many decades has directly contributed to improving the quality of life for many older people. We have no doubt his research and his teaching will have a positive impact on many lives in the years to come’’.

ProfMichaelFehlings

Dr Fehlings was presented with the prize by the Right Honourable Jacinda Ardern, Prime Minister of New Zealand, at a special ceremony in Auckland today.

About the Ryman Prize:

The Ryman Prize is administered by the Ryman Foundation. The annual international prize consists of a $250,000 grant which is awarded to the best invention, idea, research concept or initiative that has enhanced quality of life for older people. The prize was launched in 2015 to create the equivalent of a Nobel Prize for people working in the field of the health of older people.

Michael Ferhlings on speakers podium

Delayed diagnosis in myelopathy, common to many neurological diseases

By Max Butler Edited by Ben Davies

Delayed diagnosis is a major issue for myelopathy patients (Davies et al, 2018) as delays can be distressing for sufferers, and the condition is likely to worsen without treatment. On top of this, surgical treatment becomes less effective the longer the delay (Tetreault et al., 2013). However, these experiences are not unique to myelopathy.

The 2018/19 National Neurological Patient Experience Survey shows that diagnostic delays are the norm for many with neurological diseases. These findings suggest a need for large-scale change in how neurological conditions are approached on the ‘front-line’ of care.

Why was this study conducted?

The survey, run by The Neurological Alliance, asks patients with neurological diseases
about their experiences. It covers a broad range of topics, such as diagnosis,
communication, hospital care, support for mental wellbeing, and access to social care,
welfare and employment. It is an important tool for establishing the quality of
neurological care in England, and for providing an evidence-base for the need for
improvement.

How was the study conducted?

A questionnaire was completed by patients online and in neurology clinics between
October 2018 and March 2019. 10,339 patients responded to the survey, making it the
largest ever survey of people with neurological conditions in England. Previous surveys
were taken in 2014 and 2016, but this is the first time this survey has been conducted in
clinics, meaning a greater number of patients could be reached. It is also the first-time
regional differences in care have been studied.

What was discovered?

The survey shows many patients with neurological conditions are experiencing large
delays in referral to a neurologist, and therefore in diagnosis and treatment. Some key facts from the survey: 

  • 39% of survey respondents reported that they saw their GP five or more times
    before being told they needed to see a neurologist
  • 29% of survey respondents who needed to see a neurologist waited more than
    12 months (from first seeing the GP)
  • Over a fifth (21%) waited over 12 months for a confirmed and accurate diagnosis, after their first visit to a neurologist.
  • Over half (55%) of respondents said they have experienced delays in accessing
    healthcare in general
  • The survey also found wide regional variation in waiting times. The longest waits are experienced by people with neurological conditions living in the most deprived areas.

Why is this important?

The survey shows that delays to diagnosis are experienced by many patients with
neurological diseases, suggesting a need for change.

As patients are visiting the GP multiple times before diagnosis, clinician training
focussed on neurological diseases may be needed. Indeed, research carried out by The Neurological Alliance in 2016 showed 84% of GP respondents felt they could benefit from further training on identifying and managing people presenting with neurological conditions. The survey also revealed inequalities in the services provided, suggesting a ‘post-code’ lottery in the care neurological patients receive.

The Neurological Alliance, in response to the survey, has said that a National Plan for Neurology in England must be urgently developed to address the range of problems found. The Neurological Alliance is also encouraging people to write to their MP about these important issues.

Further information can be found in Neuro-Patience, which presents the findings of the 2018/19 National Neurology Patient Experience Survey.

References

  1. Davies, B.M., Mowforth, O.D., Smith, E.K., and Kotter, M.R. (2018).
    Degenerative cervical myelopathy. BMJ 360, k186.
  2. Tetreault LA, Kopjar B, Vaccaro A, Yoon ST, Arnold PM, Massicotte
    EM, Fehlings MG. (2013). A clinical prediction model to determine outcomes in
    patients with cervical spondylotic myelopathy undergoing surgical treatment: data from the prospective, multi-center AOSpine North America study. J Bone Joint Surg Am. 18;95(18):1659-66.

Myelopathy.org brings leading spine surgeons together

May 7th was a momentous day for Myelopathy.org, with not one but two landmark events occurring on the same day!

In the morning, Dr Kotter was proud to host the inaugural UK Academic Spine Symposium, Professor Peter Hutchinson (Professor of Neurosurgery, University of Cambridge) at the Royal Society of Medicine, London. This brought together representatives from the UK’s current spinal surgery research programmes, including the FORVAD trial, the NERVES trial and the GIRFT National Report.

And of course, Myelopathy was well represented with both Dr Mark Kotter and Dr Ben Davies outlining two of Myelopathy.org’s very own international research projects. First, Dr Davies discussed RECODE-DCM, a major consensus process which aims to establish a standard definition of DCM, determine the most pressing research questions in DCM and improve the consistency of DCM research. Secondly, Dr Mark Kotter gave an exciting update on RECEDE-Myelopathy – the first ever regenerative medicine trial for DCM.

Dr Mark Kotter - speaking
view of symposium from back
Entry to Chandos House
Photo courtesy of Michelle Starkey
Speaker at symposium
Photo courtesy of Toby Roney

In partnership with MediciNova, RECEDE-Myelopathy will trial the use of promising drug ibudilast for promoting spinal cord repair in myelopathy patients.

A successful result would represent a revolution in myelopathy care – the chance to not just stop deterioration of the condition, but potentially restore function.

The event was closed with a keynote lecture from one of the world’s most eminent spinal surgeons Professor Michael G Fehlings (University of Toronto) on the importance of DCM as a disease and the potential future directions of treatment and research. We are of course delighted that Professor Fehling’s has accepted the role of Chair Scientific Advisor Panel to Myelopathy.org.

Professional education will be an important part of optimising DCM care. We hope that this event was an important early stem, and we look forward to next year!

Myelopathy.org officially launches

Fresh from the success of the symposium, the Myelopathy.org team rushed across London the House of Lords. Here they began to prepare for the main event: the official launch of Myelopathy.org.

While Myelopathy.org has been registered as charity since June 2018 (although the important groundwork was occurring much earlier), May 7th marked our official launch to the public and professional worlds. We had the great privilege of being hosted by the Lord Patrick and Lady Carter of Coles. Lady Julia Carter is a DCM sufferer herself, a trustee of Myelopathy.org and an inspiring champion for myelopathy suffers everywhere. She and Lord Carter welcomed clinicians, journalists, politicians and patients to one of the House’s oldest and most beautiful function rooms, complete with a stunning view of the Thames. Here they learned about the underrepresented problem of DCM and of our efforts to tackle it.

After welcome drinks, the launch evening got into full swing. Lord Carter delivered a warming introduction and we were once again honoured to hear from Professor Michael Fehlings, one of the world’s most famous spine surgeons and mentor to our very own Dr Kotter. Prof Fehlings made a riveting case for the importance of educating the public about myelopathy which captured the audience, ready for Dr Kotter to explain his own journey, from the myelopathy patient whose plight first inspired him through to the founding of Myeloapthy.org. It was then our great pleasure to welcome Dr Yuichi Iwaki, founder and president of MediciNova, who are working alongside Dr Kotter in the first ever regenerative medicine trial in DCM. It was also our singular privilege to be joined by Mr Koji Tsuruoka, Ambassador of Japan to the United Kingdom. Ambassador Tsuruoka expressed his pride in the work of MediciNova set up by a Japanese team and based in California and explained how he saw their collaboration in the RECEDE trial as a landmark initiative that combines the best of Japanese and British strengths. We at Myelopathy.org wholeheartedly agree.

Most importantly, we heard from those with the greatest stake of all in myelopathy: sufferers with myelopathy. With considerable courage, Ms Shirley Widdop described her struggle following her DCM diagnosis in 2012. Shirley explained how the discovery of Myelopathy.org and the Myelopathy Support Facebook Group had lessened her feelings of isolation as a myelopathy sufferer. Indeed, she is now a vital part of both initiatives. Mr Iwan Sadler then described his experiences of life with DCM and his fantastic efforts in founding the original Myelopathy Support group (with undue modesty!) We have no doubt that Shirley and Iwan’s moving speeches simultaneously showed the grave reality of myelopathy to our guests, but also demonstrated how a supportive community of patients and clinicians can transform the experience of suffering from DCM. We are incredibly proud to have such able ambassadors for the cause of myelopathy.

The evening continued with many stimulating conversations between members of the Myelopathy.org team and our esteemed guests. Lead by Dr Oliver Mowforth, the Student Society were out in force to represent the next generation of clinicians and scientists who will be joining the fight against myelopathy. As the launch wound down we all felt that our guests showed a heartening interest in DCM and the future challenges facing us as patients and clinicians. We are sure that the message of myelopathy will spread far and wide after the success of the launch – awareness of myelopathy has never been higher. As a charity we are thrilled to be officially up and running and cannot wait to see where the next years take us.

All of us at myelopathy.org would like to express a particular vote of thanks to Dr Michelle Starkey and Dr Gemma Wise, without whose tireless work neither the Academic Spine Symposium nor launch would have been possible

UK-Based Benefit Support for those with Degenerative Cervical Myelopathy (DCM)

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

Information kindly collated and presented by Shirley Widdop on February 2018.

NOTE

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.

www.myelopathy.org

Myelopathy Increases Inflammation¹

Why was this study conducted?

Edited by BM Davies

Previous research¹ has demonstrated that patients with cervical myelopathy undergo an immune response. Additionally, proinflammatory proteins, called cytokines, are more present in cerebrospinal fluid in patients with cervical myelopathy and low back degenerative disc disease. Therefore, it is possible that some of these cytokines may be able to serve as blood markers of severity of cervical myelopathy.

How was the study conducted?

This was a comprehensive study involving both humans and animals to help investigate their research question.

In humans: Blood was collected from 40 patients with cervical myelopathy before surgery, 10 controls without myelopathy, and another group of 10 patients with myelopathy to serve as a validation group. From this blood they analyzed the presence of 4 cytokines.

In rats: These cytokines are also compared between healthy rats, and rats in which cervical myelopathy was recreated. The researchers also went on to administer a large dose of one of the cytokines (interleukin-6) in rats who did not have compression, so see what would happen. They looked at amount of motor function, pain sensitivity, tissue damage, and cytokine levels in the rats.

What was discovered?

Of the 4 cytokines examined, patients with cervical myelopathy had an increased concentration of interleukin-6 only. This was found in both groups of patients with cervical myelopathy. Interleukin-6 was moderately associated with mJOA scores and body mass index but not age or symptom duration. While interleukin-6 levels were higher than controls, they still were in the range of what is clinically considered “normal” suggesting that it was elevated but not THAT elevated.

Additionally, rats that had experimental compression of their cervical spinal cord had elevated levels of interleukin-6 in both their blood and cerebrospinal fluid. They also had lower motor function scores than rats without compression, increased pain sensitivity, and spinal cord damage. Interestingly, the rats that had an experimental dose of interleukin-6 had similar motor scores, pain sensitivity, and spinal cord damage to the rats with compression.

Why is this important?

This study importantly expands our knowledge of the disease process in patients with cervical myelopathy. Since the blood interleukin-6 levels were still in the “normal”, it may not be the best marker for diagnosing the disease, but it appears it could serve as an indicator of severity of the condition. It is also important because the study was done in a way that we can have substantial confidence that what they found was real. Science has a problem lately with being unable to replicate findings.² This study, on the other hand, replicated their own findings in humans and an animal model of cervical myelopathy.

Overall, this study highlights that inflammation may be an important component of cervical myelopathy, and therefore by extension anti-inflammatory therapy could have potential. There is still a lot more we need to explore with that though as some anti-inflammatory medicines can impair healing after a cervical fusion. Therefore, patients with cervical myelopathy shouldn’t start an anti-inflammatory regimen without consulting their surgeon!

Questions for discussion:

1. Have you noticed any benefits in motor function such as walking, grip, or balance while on anti-inflammatories?

Let us know in the comments!

 

References

1. Du S, Sun Y, Zhao B. Interleukin-6 Serum Levels Are Elevated in Individuals with Degenerative Cervical Myelopathy and Are Correlated with Symptom Severity. In: Med Sci Monit. Vol 24.2018:7405-7413.
2. Baker M. 1,500 scientists lift the lid on reproducibility. Nature News. 2016;533(7604):452.

A new way to detect myelopathy?

Edited by B. Davies


WHO: Researchers at the University of Southern California have conducted some exciting new myelopathy research
WHAT: The researchers have developed and validated a screening test for myelopathy

WHY: In medicine there are 2 types of tests: screening tests and diagnostic tests. Screening tests tend to be quick, safe, require few resources and are appropriate to use on a very large scale, for example all people at risk of having a particular medical condition who may not have any symptoms Diagnostic tests tend to be more complicated, more expensive, most time-intensive and have great risks for patients. Screening tests are ideal for picking up disease in people without any symptoms to catch things early. People who have positive test results are then referred on for further diagnostic testing to confirm whether they have the particular medical condition. Diagnostic screening then, is used in people who we have a high suspicion might have a disease, either because they have a positive screening test of because they have symptoms.

Getting back to myelopathy, there are currently very effective diagnostic tests, based on a combination of a doctor’s history taking, physical examination and an MRI scan. However, there are currently no screening tests for myelopathy. Putting this in the context of the subtle symptoms of myelopathy (Davies et al., 2018), the fact that myelopathy is currently being diagnosed too slowly (Behrbalk et al., 2013), and the duration of symptoms before diagnosis are thought to be the most important factor determining how well patients get on in the long-term after surgery (Ebersold et al., 1995), a myelopathy screening test sounds a brilliant idea!  

Developing and testing such a screening test is exactly what the researchers have done!

HOW: The researchers developed a 4-question test based upon previous research and their experience of the most common DCM symptoms. The test involves asking the patient each of the four questions. The four questions are:

1. Have you noticed that you are dropping things or that your hands feel clumsy?

2. Have you felt more off-balance or unsteady on your feet? 

3. Do you feel weakness in one or both of your arms or hands?

4. Do you feel numbness or tingling in one or both of your arms or hands?

The researchers called the test the DOWN test (see words in bold).  If the patient answered yes to a question this was called a positive answer and if they answer no this was called a negative answer.

The researchers then asked the questions to 46 myelopathy patients and 46 patients who did not have myelopathy. This study design is called a case-control study.

FINDINGS

The researchers experimented trying different combinations of how many responses to the DOWN questionnaire had to be positive to define a positive overall test result. There are various measures that can be used for this. Bear in mind that with any test there is always the risk that the result might be positive because a patient has another medical condition, or due to chance, rather than the medical condition that the researchers are interested in. Therefore, researchers use a combination of statistical measurers to check how good a test is. One measure is called sensitivity, and this tells researchers how good a test is at identifying people with a particular medical condition, for example myelopathy. Another measure is specificity, which tells researchers how likely a positive result is to be because of myelopathy rather than being positive because of another medical condition or due to chance. 

So, a test might be very sensitive because it is positive for nearly all myelopathy patients but at the same time not be very specific because it is also positive for many patients with other medical conditions. This would mean that we could be reasonably sure that someone doesn’t have myelopathy if they have a negative test but if they have a positive test, we cannot be sure whether they have myelopathy or another medical condition, or no condition at all. 

Ultimately there is a trade-off between sensitivity and specificity – the better you make a test at identifying all cases of a particular medical condition (increasing the sensitivity) the better it becomes at identifying people with other medical conditions (decreasing the specificity). High sensitivity is desirable in a screening test to act like a net to catch as many patients as possible who have myelopathy. We can then use other tests to rule out those who do not have it later. However, this approach is not without problems, especially as it will inevitably involve a lot of unnecessary anxiety for patients with positive screening tests who later turn out not to have the condition after all. 

In the end, the researchers recommended using cut-off of 3 positive answers to define an overall positive test result, meaning a patient is likely to have myelopathy. 

Researchers found that patients with myelopathy had higher DOWN scores than those without myelopathy and that patients with 3 or 4 positive responses were significantly more likely to have myelopathy. They found that 91% of patients who had 3 positive questions had myelopathy. They showed that the DOWN screening test is accurate identifying patients with myelopathy. 

SO WHAT?: Myelopathy is very difficult to diagnose early. Most patients present with subtle symptoms to general practitioners, who have very broad medical knowledge but do not have the same expertise in myelopathy as spinal surgeons. The development of the DOWN screening test has great promise to screen patients, facilitate earlier diagnosis, and reduce suffering for patients. Increasing age is a risk factor for myelopathy, which is predicted to become commoner with ageing population. This makes all the more need for a test like the DOWN test.

NEXT STEPS: the current study was conducted on a relatively small number of patients who were part of a very well-defined group attending a specialist spinal service. Given that the DOWN test will be used mainly by general practitioners on the general population, a follow up study is needed to check the results in a larger and more diverse group of patients. It may also be worth studying whether using different questions can improve the test.

Picture of a net

References

Behrbalk, E., Salame, K., Regev, G.J., Keynan, O., Boszczyk, B., and Lidar, Z. (2013). Delayed diagnosis of cervical spondylotic myelopathy by primary care physicians. Neurosurg. Focus 35, E1.
Davies, B.M., Mowforth, O.D., Smith, E.K., and Kotter, M.R. (2018). Degenerative cervical myelopathy. BMJ 360, k186.
Ebersold, M.J., Pare, M.C., and Quast, L.M. (1995). Surgical treatment for cervical spondylitic myelopathy. J. Neurosurg. 82, 745–751.