Myelopathy Matters

Iwan and Ben are joined by the winners of the Myelopathy.org Research Award 2023 - Aditya Vedantam and Kajama Satkunendrarajah - for their investigation of how breathing is affected in DCM, with some stark findings and potential implications for our understanding of fatigue. The prize is awarded by the charity's scientific steering committee to the best scientific study aligned with one of the research priorities each year. You can read more about the award at https://myelopathy.org/research-award/.

This month Ben and Iwan hear a UK perspective on the challenges of early diagnosis. They are joined by James Whatley, an advanced physiotherapy practitioner from North London, to hear his perspectives on initial diagnosis and triage. This initial step in the pathway, appears to be a critical and common focal point for global interventions to accelerate diagnosis.

In the first of a two part episode, Iwan and Ben speak to professionals tackling myelopathy's greatest challenge: Diagnosis. Rohil Chauhan is a Physiotherapist working in New Zealand, who was inspired to look more deeply at what are the specific challenges faced by frontline professionals. Rohil also takes the time to answer some of your questions. #myelopathymatters

In this podcast episode, Iwan is flying solo. He interviews Sheila Thomas Duggan, a dedicated volunteer and administrator for myelopathy.org's support group. Sheila shares her personal experience of living with DCM (Degenerative Cervical Myelopathy) and discusses how she finds it incredibly rewarding to give back and provide support to people facing similar challenges with myelopathy. The episode delves into Sheila's journey, her insights, and the importance of community and support in coping with this condition.

Iwan and Ben pause for reflection, 10 years since they first came together to create Myelopathy.org (alongside Mark Kotter), and almost 5 years since the research priorities were established in DCM. The community and reach of the charity has grown significantly over this time, which has become a powerful platform for progress. However alongside opportunity, the size also brings operational challenges. It feels like Myelopathy.org is at a tipping point, and to truly kick on we need to focus on growing financial investment. What can be done? Where could this go? Some of the critical topics discussed. If you have ideas or suggestions do get in touch ben@myelopathy.org.

It's a Myelopathy Matters Exclusive! Iwan and Ben are joined by Myelopathy.org researcher Irina Sangeorzan, to hear about the new Core Information Set. This forms part of a wider project called Shared DCM, and funded by the Evelyn Trust, to help people affected with DCM take a more active role in the decision making around their care. As Iwan likes to say, “Knowledge is Power”. The use of a CIS in this manner is a first for healthcare. We hear why it was needed, how it was formed and what it hopes to achieve.

Iwan and Ben are joined by Jay Cantebrigge, a person living with myelopathy, to talk about his campaign “on borrowed spine” aiming to raise awareness of DCM. Jay is taking the campaign on the road, turning a bus into a mobile educational cafe! The project is at the early stages, and Jay is looking for help - financial or in kind. Find further information at https://www.gofundme.com/f/onborrowedspine-bus-conversion.

With expert opinion from Spine Surgeons Michael Fehlings, Rory Murphy and Valerie Schuermans, and the personal experience of Meghan Baxter, Iwan and Ben explore the role of cervical disc replacement (also known as cervical arthroplasty) surgery for Degenerative Cervical Myelopathy: what we know, and what we still need to find out.

Iwan and Ben hear from Dr Ayush Sharma, Surgeon Scientist from Ambedkar Central Railway Hospital in India, on his trials exploring a role for Cerebrolysin (https://www.cerebrolysin.com) to help boost recovery after surgery for Degenerative Cervical Myelopathy. This is a recognised research priority.

At present, treatment for myelopathy varies widely. Although various surgical treatments are well known, there are currently no guidelines for the many non-operative domains of care (e.g. pre- and post-operative rehabilitation, pain relief, physiotherapy, nursing). In a powerful initiative led by Prof Chad Cook from Duke University, the RECODE-DCM Perioperative Rehabilitation Incubator is bringing together experts from all relevant disciplines to write management guidelines. Iwan shares his story, as a reminder of why filling this important knowledge gap could provide many simple, immediate gains for people living with myelopathy.

In this episode, we hear from neurologist Lindsay Tetreault from NYU. Lindsay has been leading the work of the RECODE-DCM Diagnostic Criteria incubator, tackling the all-important question of how to provide a timely, accurate and reliable diagnosis of DCM. Voicing the concerns of individuals living with DCM, Iwan reflects on the profound importance of shortening the time to diagnosis; and Ben explains why the combined perspectives of the multidisciplinary RECODE-DCM network are key to unlocking this research priority.

Myelopathy Matters is back; into its four year. Ben is joined by Liz Roberts, Myelopathy.org's programme manager for RECODE DCM. RECODE DCM is the charity's new myelopathy ‘think tank', creating an international and multidisciplinary ecosystem, working alongside those living with myelopathy, to accelerate new discoveries and ensure the enter the clinic. We hear from Aria Nouri, Surgeon Scientist from Geneva and chair of a RECODE DCM international working group looking at the onset of DCM (the Natural History) and what that means for quality care today.

It's Iwan's turn to pick a favourite from the archives; we return to 2021 when Ben spoke to Prof Abdul Lalkhen following the release of his book “Pain and the feeling brain”. Abdul is a Pain Physician from Manchester, and helps to unlock the basis for pain and how it applies to myelopathy. As Iwan attests, understanding is a foundation of taking control. Pain is a much under appreciated consequence of myelopathy, and we are delighted Abdul has since joined the scientific advisory board for Myelopathy.org. We look forward to tackling this issue further.

For the first or two festive specials, Ben picks one of his favourite interviews from the last four years, the story of ajourney from diagnosis through treatment through the eyes of the person with myelopathy (Daniel Simpson) and his surgeon (Dr James Harrop, Thomas Jefferson University Hospital).

Iwan and Ben are joined by Dr Maryse Fortin, Physiotherapist and Clinical Researcher at Concordia University, Canada to hear about how she has been using MRI to characterise the shape and make up of neck muscles in people with DCM. Maryse shares her early findings and talks about how her group are building on this, to explore how they technique could inform care.

Ben and Iwan are joined by Dr Mark Kotter Chief Investigator of RECEDE-Myelopathy, the first drug trial testing with a medicine called Ibudilast can help repair the spinal cord after surgery. Dr Kazuko Matsuda from Medinovca, the pharmaceutical company behind the drug, explains the mechanism and wider opportunities.

Iwan takes charge of the podcast this month, as he interviews Ben Davies about MoveMed, a mobile monitoring system for neuromuscular disease he has been developing. Ben is joined by Alvaro Yanez, a co-developer, to describe the origins of MoveMed; why it was developed and what are the next steps towards clinical care. The team advertise a new online study, with collaborators from the University of Cambridge called EMPOWER, which offers people with a neurological condition the opportunity to test, provide feedback and help further refine MoveMed. Further information can be found at the study website: https://movemed.io/empower

Iwan and Ben are joined by Prof Chad Cook from Duke University, to understand a new concept of ‘High Impact Chronic Pain', and how both striking commonly it is in DCM, but promisingly often responsive to surgical treatment. Chad shares his perspectives on the challenges of diagnosing DCM and where we must now take pain research in DCM.

Ben and Iwan speak to Dr Konstantinos Margetis, a Spine Surgeon at Mount Sinai Hospital New York and Dr Carl Zipser, a Neurologist at Balgrist University Switzerland, members of the AO Spine RECODE-DCM Diagnostic Criteria Incubator, a group working to produce the first diagnostic criteria for DCM.

Should surgery from the back of the neck include metalwork (‘instrumented fusion')? Today there is widespread variation in practice: if you are treated in North America you are almost guaranteed to have fusion, whereas in Europe it's about 50/50. Ben and Iwan are joined by Dr Anna MacDowall, a Spine Surgeon from Sweden, to discuss why. Anna outlines her new trial ‘MyRanC' and Ben the UK trial NIHR POLYFIX-DCM, both hoping to provide definitive answers to this question through randomised controlled trials.

Iwan and Ben meet Esther Martin Moore, a person living with degenerative cervical myelopathy who was inspired by virtual family get togethers during the pandemic, to create an equivalent for people living with DCM. These 'virtual coffee breaks' have been very well received, and are now taking place across the globe. Esther explains how the positivity and understsanding shared by those attending, has been so effective - and can extend the support Myelopathy.org offers.

How can we tell during surgery whether the spinal cord is adequately decompressed? Iwan and Ben are joined by Dr Carl Zipser, a Consultant Neurologist and Scientist at Balgrist University Hospital, Switzerland to discuss his study looking at a role for CSF pressure monitoring. It represents a return to concepts that have been dormant for over 40 years, but now a timely one, as we look for techniques to overcome the limitations of MRI.

Dr Mark Kotter, surgeon scientist at the University of Cambridge, shares the journey of his personal recognition of the importance of involving patients in research design and conduct; and Toto Gronlund, from the James Lind Alliance, reinforces the value of bringing the different stakeholders together in Priority-Setting Partnerships. This is part of a special 'Research Top Tips' series, from Myelopathy Matters (Myelopathy.org) and AO Spine RECODE-DCM, as they work together to accelerate knowledge discovery that can change outcomes in DCM.

Dr Shekar Kurpad, Professor of Neurological Surgery at the Medical College of Wisconsin, talks to Ben Davies about time-management, humility and mentorship - his recipe for success in a dual clinical and academic practice. This is part of a special 'Research Top Tips' series, from Myelopathy Matters (Myelopathy.org) and AO Spine RECODE-DCM, as they work together to accelerate knowledge discovery that can change outcomes in DCM.

In today's episode we hear from spine surgeon Dr Jamie Wilson on his transition from clinical neurosurgical resident in the UK to Assistant Professor at the University of Nebraska Medical Centre, USA: what motivated the change and how he went about it. This is part of a special 'Research Top Tips' series, from Myelopathy Matters (Myelopathy.org) and AO Spine RECODE-DCM, as they work together to accelerate knowledge discovery that can change outcomes in DCM.

Dr Michael Fehlings, Professor of Neurosurgery at the University of Toronto, draws on his extensive clinical trial experience, to share what he thinks ensures success; from the design, to the conduct and its implementation. This is part of a special 'Research Top Tips' series, from Myelopathy Matters (Myelopathy.org) and AO Spine RECODE-DCM, as they work together to accelerate knowledge discovery that can change outcomes in DCM.

Dr Brian Kwon, Professor of Neurosurgery at the University of British Columbia in Canada, draws on his vast experience of grant writing to share his top tips for success. This is part of a special 'Research Top Tips' series, from Myelopathy Matters (Myelopathy.org) and AO Spine RECODE-DCM, as they work together to accelerate knowledge discovery that can change outcomes in DCM.

Iwan and Ben are joined by Dr Deepak Ravindran, Consultant in Pain Medicine and Anaesthesiae, following the release of his book - The pain free mindset: 7 Steps to Taking Control and Overcoming Chronic Pain. They discuss our evolving understanding of what pain means, why are approach to managing pain needs to change, and how one might apply this framework day to day.

Iwan and Ben are joined by the Chief Investigator of the CSM-S Trial, the first randomised controlled trial of anterior surgery (surgery from the front of the neck) versus posterior surgery(surgery from the back of the neck), to discuss its findings and implications for care. Its a story of perhaps overlooked challenges and overlooked opportunities for Degenerative Cervical Myelopathy.

Ben and Iwan, are joined by Celine Parathasarathy (University of Cambridge) and Aria Nouri (Surgeon Scientist, Geneve University Hospital) as they discuss a potential role for nutrition on improving care and outcomes in Degenerative Cervical Myelopathy. Could nutrition be a simple disease modifying therapy?

Ben and Iwan talk explore why patient education is so crucial to improving care in myelopathy. They hear from Spine Surgeon Rory Murphy and Medical Illustrator Peter Lawrence who have been developing resources to tackle this at the Barrow Neurological Institute. They also look ahead to a new project from Myelopathy.org called 'DCM COINS or DCM Core Information Sets, with Rishi Umeria, to see if a standard framework could help provide the right information for patients at the right time.

"You are just getting older" - Or is it? Ben and Iwan explore the significance of age to the onset and treatment of Degenerative Cervical Myelopathy, with guests Dr Jamie Wilson (University Nebraska Medical Centre) and Ben Grodzinski (University of Cambridge). Some of the research discussed in this PodCast can be found at these links: Grodzinski et al 2021 10.1093/ageing/afaa236 Wilson et al 2019 10.3390/jcm8101708 Wilson et al 2020 10.3390/jcm9113491

Ben and Iwan continue their interview with Dr Abdul Lalkhen, a Consultant in Pain Medicine at Salford Royal Foundation Trust and visiting Professor at Manchester Metropolitan University, turning their attention to current and future management, including the role of medical cannabis.

Ben and Iwan are joined this month by Dr Abdul Lalkhen, a Consultant in Pain Medicine at Salford Royal Foundation Trust and visiting Professor at Manchester Metropolitan University, to discuss how we experience pain and why it can persist long after an injury has supposedly healed.

Ben Davies is joined by Co-Founder Iwan Sadler, as they explore the potential and significant financial consequences that can arise as a result of myelopathy, with guest Shirley Widdop. Shirley is a former nurse, disabled by myelopathy and now campaigning against relative poverty. She provides a deep insight into how people can access financial support in the UK.

Ben and Michelle close the year by speaking with Olesja Hazenbiller and Kaija Kurki-Suonio of AO Spine, who are important driving forces behind RECODE-DCM. They tell us about this important model for making progress in an area of medicine. We also hear from the project's expert in Knowledge Translation, Lisa Petermann, about the importance of this ongoing aspect of the work. Wishing everyone a great holiday period, wherever you are. Thank you for listening this year!

In this last episode, Michelle and Ben tackle the No. 10 priority, individualising surgery for DCM. The information specialist for AO Spine RECODE-DCM, Dr Lindsay Tetreault, delves into datasets that can best inform surgical decision-making and predict outcome. Then for an inspirational final note, we shine a light on an uplifting case-study from the perspectives of both the spine surgeon, Dr James Harrop, and his patient, writer Daniel Simpson, who has been blind since birth. Through exemplary respect for his patient’s wishes and needs, Dr Harrop carried out life-changing surgery for Daniel’s DCM, restoring Daniel’s ability to see the world with his hands and thereby showcasing the real-world promise of successfully individualising surgery.

In this episode, Michelle and Ben focus on the No. 9 priority, Imaging and Neurophysiology. Spine surgeon Bizhan Aarabi defines the capability of current techniques to deliver the objective, quantitative information on structure and function of the cervical spine that is required for accurate prognostication. Person with DCM Rosie Hillman gives her first-hand insight into interpretation of test results and their crucial role in diagnosis and surgical decision-making. Spine surgeon Shekar Kurpad examines how to maximise the output of tests whilst optimising the patients’ experience and speculates that translational research groups involving physicists and engineers could hold the key for future breakthroughs.

Focussing on the No. 8 priority, the Socio-Economic Impact of DCM, Michelle and Ben first talk to Shirley Widdop, who lives with DCM. Shirley brings a broad experience of the profound financial impact of DCM, both from her own perspective and also anecdotally from the international online support group. We hear from spine surgeons Andreas Demetriades, who explores healthcare inequalities, and Michael Fehlings, who defines the cost-effectiveness of surgery for DCM. Health economist Richard Phillips then outlines the current limitations and promising future strategies for modelling the socio-economic burden of DCM using big data.

Novel therapies for DCM are the No. 7 priority explored by Michelle and Ben. Ricardo Rodrigues-Pinto outlines our current limitations and the potential spectrum of advances, from biological treatments to assistive technologies. Annie Wandycz shares her lived experience of therapies for DCM, her frustrations and optimism, and her helpful perspectives from the online support group. Mark Kotter explains how novel experimental treatment paradigms can deliver progress in both laboratory and clinical settings, and Julio Furlan describes how strategies for neurorehabilitation in spinal cord injury could advance the DCM field.

The No. 6 priority is to determine the role of rehabilitation in DCM, both pre- and post-surgery. Michelle and Ben ask Tim Boerger, a clinical research student who has had surgery for his DCM, to share his experience of peri-operative rehabilitation. Julio Furlan talks about existing rehabilitation strategies in spinal cord injury and how they might be translated to this highly variable patient group. And Armin Curt discusses ways in which our knowledge can be applied, developed and communicated.

In this episode, Michelle and Ben focus on the No 5 priority, defining the biological basis of DCM. Surgeon and scientist Mark Kotter explores how degenerative pathology translates to clinical symptomatology. Ellen Sarewitz, who lives with DCM, uses her medical communications background to pinpoint knowledge gaps and endorse multi-stakeholder solutions. Scientist James Fawcett encourages synergy between the traumatic and non-traumatic spinal cord injury research communities to inspire preclinical studies and accelerate clinical trials in DCM.

The No 4 Priority of the RECODE-DCM project is advancing techniques for Assessment and Monitoring of DCM. Michelle and Ben hear Paige Howard's perspective as someone living with DCM, sharing her past experiences, her fears and her hopes for the future. Spine Surgeon Paul Koljonen and Physiotherapist Sukhvinder Kalsi-Ryan give their expert input regarding current techniques, critical knowledge gaps and recent innovations in the field.

Accelerating and improving the diagnosis of DCM is the No 3 priority of the AO Spine RECODE-DCM project. Michelle and Ben speak to Iwan Sadler, who struggled with the progressive symptoms of DCM for a decade with no diagnosis, prompting him to set up his own online support group. Surgeons Dr James Harrop and Dr Brian Kwon discuss the difficulties of diagnosing DCM today and consider some promising avenues for research to facilitate early diagnosis.

Tackling the No 2 priority of the AO Spine RECODE-DCM project, Michelle and Ben examine our current understanding of the natural history of DCM and the factors that influence the development and progression of the disease. In conversation with spine surgeons Dr Jefferson Wilson and Dr Brian Kwon, as well as Lady Julia Carter who lives with cervical myelopathy, they highlight the key knowledge gaps and how to rectify these.

Tackling the No 1 priority of the AO Spine RECODE-DCM project, Michelle and Ben address the challenges and potential solutions for raising awareness of DCM throughout the medical community and the general public. They explore the perspectives of spine surgeons Dr Michael Fehlings and Dr Mark Kotter, and family practitioner Dr James Milligan, as well as Tammy Blizzard, who's a person living with cervical myelopathy.

From next week, the Myelopathy Matters stream will be taken over for ten weekly special podcasts about an important international project to direct future research into DCM. This special episode of Myelopathy Matters introduces the project and what it hopes to deliver for people living with and working with DCM. Michelle and Ben discuss RECODE-DCM with chief investigator Dr Mark Kotter.

Ben and Michelle discuss the upcoming series of special podcasts on the RECODE-DCM project, which brings people with DCM and medical experts together to direct future research. Ben interviews myelopathy pioneer Michael Fehlings about his career and the future of myelopathy research and treatment.

In this episode, we meet two of the trustees and hear about how the charity works and what its ambitions are for the year ahead.

We speak to Aria Nouri about the origin of the name Degenerative Cervical Myelopathy and Tim Boerger about the word "patient".

Myelopathy.org launches Myelopathy Matters, their official podcast. It aims to bring together professionals, researchers, people with myelopathy and their supporters to talk all things Degenerative Cervical Myelopathy (Cervical Spondylotic Myelopathy). Episode 2 discusses Moving On with Myelopathy.