Episodes
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Iwan and Ben are joined by the winners of the Myelopathy.org Research Award 2023 - Aditya Vedantam and Kajana 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/. -
Happy New Year, 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.
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Missing episodes?
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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
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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.
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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 [email protected].
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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).
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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.
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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.
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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
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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.
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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.
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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. - Show more
