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Category Myelopathy Blog

Addressing recent concerns about Myelopathy.org and affiliated surveys

A message from the director

Concerns have recently been raised with regards the legitimacy of the Health Surveys hosted by Myelopathy.org and I would like to address these directly.
 
As you are only too aware, Myelopathy is a condition which faces a number of significant challenges including lifelong disability, widespread misunderstanding and under-recognition, and a lack of clear information or support.   Myelopathy.org was founded to address these issues and become a rallying point for change. 
 
We see research as an important part of delivering change and support projects that can advance our understanding.  As the largest ever Myelopathy community, your shared experiences have a lot to offer researchers, and therefore health surveys have been a prominent part of our research arm.  So far, more than 2000 people have shared their experiences, making these some of the largest ever studies in Myelopathy.  That data is still being processed, and we look forward to seeing the results soon, but this in itself is a testament to what we can achieve together.
 
As an organisation we recognise the power of this community and are committed to its responsible management.  In this respect, all research associations and projects have been and are expected to meet our ethical standards.  This includes adhering to our code of conduct, providing appropriate regulatory approval and practicing safe management of personal data.  All proposed surveys are first piloted and approved internally.
 
Looking through our research section today, I can see that this oversight is not as explicit as it should be, and we will be introducing clearer documentation to correct this.
 
We are a very young organisation, developing and learning as we go along but in a short time we have made great in roads; I remember when we first launched, canine myelopathy was the prominent feature of google search results, but now our myelopathy has come to the forefront.    
 
There is still a long way to go, but it will be together that we can drive change and not as individuals.  The internet has provided a platform for us to come together, but we must remember that it can also have the potential to divide us: both as an organisation and as individual members we all must act responsibly.  In that regard, if you feel any of our actions or the actions of our members questionable, please get in touch directly.
 
Thank you for your ongoing support.
 
 
Benjamin Davies
Director Myelopathy.org  

Ageing increases impact of spinal cord compression

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FEM (Finite Element Method) analyses the impact of mechanical loads e.g. ‘stress’. It was principally used in engineering (for example aerospace), but increasingly also medical research

At the moment, we do not have medical investigations which are able to represent accurately the significance of spinal cord injury.  For example, you could have two patients with exactly the same MRI changes, one who is without symptoms and the other who is severely affected. 

This is a major challenge for researchers, with many exploring new tools to provide better assessment methods

However, amongst this confusion, age seems to be important as the number of people with symptomatic cord compression increases with age.  Moreover, some have shown that age can affect response to surgery.  

A group from Japan have been experimenting using a preclinical (animal) model, to investigate how spinal cords of different ages react to the same compression force.  Using a technique called Finite Element Method, more typically used in engineering, they have shown that in an older spinal cord the same amount of compression causes a much higher stress to the spinal cord tissue, than in a younger spinal cord.  This was the same for sudden or slow compressive forces. 

​ Of course this experiment has not been conducted on human spinal cords, but the findings are in keeping with a wider experience of aging and CSM and is a further reminder of the need for more sophisticated tools to represent the extent of spinal cord injury in CSM.  

Reference

1. Okazaki et al. Age‐related changes of the spinal cord: A biomechanical studyExperimental and Therapeutic Medicine 2018

We welcome Frank Dutton to our fundraising  team

PictureFrank Dutton Charity Ambassador

We are very happy to welcome Frank Dutton to our team,Frank was diagnosed with cervical myelopathy in  2015 and is currently leading our fundraising efforts as  a Charity Ambassador.If you have any fundraising ideas or want to raise money for our cause you can email Frank directly at the bottom of the page.

​Frank’s Background Story 
My whole life was driven by sport, mainly encouraged by my Granddad, and I played both football and Ice-hockey at an early age, the latter for a living. A severe knee injury forced me to hang my boots up but I continued being involved in sport only this time I took on the role of a goalkeeping coach in football, working with all age groups in both Milton Keynes and Bedford. An innocuous dive for a ball during a coaching session on the 27th September 2008 was to change my life drastically. I landed awkwardly on my arm and the elbow dug into my lower abdomen. A few hours later I was rushed into A&E and despite breaking bones and tearing ligaments during my career this was at a level I had never truly experienced before.

Roughly a year and half later I was referred to Addenbrookes hospital pain management team, and they diagnosed I had torn a stomach muscle, for the second time in my life, but had also damaged nerve endings and I was now suffering from Chronic Pain Syndrome and due to the damage done to my nerve endings, I would probably suffer from that for the rest of my life. To go from being so physically active to not being able to move without causing any pain was very hard to accept and then having to endure things such as having to be pushed around in a wheelchair where I had become so weak was tough and mentally I have constantly struggled to come to terms with it. Thankfully my partner Lucy has helped me to learn to deal with these emotions and in 2010 she encouraged me to enrol on an Access Course at Bedford College with a view to going to University and begin training as a Primary School Teacher. For someone who had left school with no qualifications to speak of, and to go to college was really scary but I enjoyed my time there, and I even wrote an article for the college paper about being a mature student struggling with a disability. I passed the course with merits and distinctions and gained a triple distinction for my final dissertation. I was speechless at how well things had gone and I was even more amazed when the University of Bedfordshire accepted me onto their Early Years Education, 3 year BA Hons degree. Whilst at Uni I knew the typical student nightlife was never going to be an option however I wanted to get involved as much as I could and so I became a Course Rep, a PAL leader during my 2nd and 3rd years, which involved helping first year students negotiate their first two terms on campus, and I also volunteered as a Student Ambassador, which involved helping out on Open Days showing prospective students around the campus and giving talks both on campus and in local colleges and schools about my experiences of being a student as well. This all helped me to gain confidence in myself and I found myself being asked to become a mentor to disabled students who were finding it difficult to adjust to university life. As I had done at college, I also found myself writing an article for the university magazine about how I’d gone from playing hockey to being a student wanting to work with children. My health continued to make things difficult but the university were superb and with an added year I eventually graduated in the July of 2015. Despite the issues I had endured, I enrolled onto the PGCE course to gain my teachers qualification. My health unfortunately took a turn for the worse, and I began to have constant tingling in my left arm and I had started to pass out with an alarming frequency.

Eventually I had to accept things were not getting better and I withdrew from the course on the 17th November which was one of the lowest points in my life. In January 2016 I applied for a job at the university working with the Dean of Student Experience and was offered the job on a 6 month contract. The role meant talking to students and finding out what issues they had experienced as well as contacting other universities to see what things they were initiating to get students involved more. During my time in this role I was instrumental in the starting of a student society called PAMMS, which was for parents and mature students, a student group I felt were regularly missed during student life and events. I was still passing out regularly and in late May 2016 that problem eventually caught up with me. I was in the garden playing with my dogs when I passed out, and upon coming round I was surrounded by broken wood and a concerned dog licking my face, it became clear I had gone through a small garden table and had badly bruised my left arm. A trip to A&E showed I hadn’t broken any bones but my arm was still extremely sore and had swollen quite alarmingly. The arm continued to swell and a few days later the whole forearm was black with bruising and was so painful I couldn’t bear anything touching my arm, leading to another trip up to A&E. A succession of specialists and nurses took it in turns to look at my arm and I was eventually taken to a ward before having surgery to repair the Compartment Syndrome which I was now suffering from. A CT and an MRI scan back in February of 2016 had already shown I had issues with 5 discs in my neck and that these were pressing on my spinal cord. In the August 2016 after seeing the neurology department at Cambridge hospital I had an ACDF to repair my C4/5 discs, however the surgeon stated I would need further surgery to repair the other levels. Another knock to my left hand caused my arm to swell again, and another trip to A&E led to me being rushed to surgery in late November 2016 to repair a second Compartment Syndrome, this time on the inner half of my left arm. I have been left with two 7* inch long scars on my left arm, and I was still continuing to pass out on a regular basis, and a further MRI scan in March of 2017 showed the discs in the neck had got worse and I needed major surgery to repair things. Lucy and I got married in late July and enjoyed a superb Honeymoon in Wales later on in September. My surgery was scheduled for 11th December and unfortunately was postponed three times, however, I reported to Addenbrookes on the 24th January 2018 for surgery the day after.


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​The surgery:
My surgery was to be a posterior fusion from C2-T1 with a laminectomy of C3/4/5. Due to the issues with the arm I had been diagnosed with an Acquired Severe Bleeding Disorder and thus needed platelets and other blood cultures to try to ensure there were no complications during the surgery. Trust me to make it a problem as an issue with controlling the bleeding along with the intricate metal work being inserted into my neck meant I was in theatre for just over 8 hours before being taken to critical care to begin the recovery.


Post surgery:

I woke up and to be honest for the first 36 hours I felt pretty good, I think the copious amounts of Ketamine and morphine being pumped into my body may have had something to do with it. Lucy came to visit the day after surgery and couldn’t believe how coherent I was and in how little pain I appeared to be, this would definitely not be the case the day after, once I had been transferred to a Neuro ward and the Ketamine had worn off. I felt like I had been hit by a train and any movement sent fresh waves down my neck and back, and I couldn’t believe how uncomfortable the neck brace was either, even a morphine pump struggled to keep up with the need for pain relief as my body tried to cope with what had just happened. Over the next two weeks I gradually recovered and was allowed home, with the knowledge I had to keep the brace on for 24 hours a day and I would be seen in around 3 months time. The recovery process at home was hampered by an issue with sciatica which prevented me from laying in a reclined position in my bed forcing me to spend the first three months after the surgery sleeping on my sofa. This was really difficult to cope with but Lucy kept me going and I made sure the sympathy mode was kept up with wine gums and jelly babies being to the fore of my food intake. Lucy was able to take me out for a coffee on the odd occasion and my pain levels slowly reduced although even now 6 months down the line I am still having issues with the pain in the surgery site as the muscles begin to knit back together. My Chronic Pain has obviously not helped and has at times left me reaching for the oramorph as the pain relief I am already on had not controlled things. I have good and bad days and occasionally I have a very bad day which leaves me barely able to move. On a plus side I am no longer passing out 3-4 times a day, which when you think about it, I have been passing out for nearly 18 months, so at a best guess, I’ve zonked out over a 1,000 times.
I am now well on the road to recovery and despite still having issues with my shoulders and trying to get used to having a limited range of movement in my neck, having the surgery was worth it and indeed was necessary. My surgery was for prevention rather than cure and I know that whilst I wont ever score the winning goal in a Stanley Cup Final, I’m now looking forward to the future with confidence and this role is the perfect opportunity for me to continue with my recovery and make the most of the superb work done by my surgeon Dr Mark Kotter. It was Mark that explained myelopathy to me before I had my surgery and told me about the Facebook support group which I subsequently joined and that has been such a great support to myself and my wife. It has also helped me understand my condition more with the information available and accounts from others who suffer this tough condition.  When the group got the great news it was becoming a charity I really felt I wanted to be involved and to help spread he awareness of this condition and to raise funds. After speaking to the team I have been given the great opportunity to become the charity Ambassador for Myelopathy.org and hope that I can help to spread the word and begin to help people to understand the condition and thus give support to both sufferers and their loved ones. 


    If you want to raise money for myelopathy.org please enter your details below

Can a new MRI technique predict how you respond to surgery?

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By Timothy Boerger 
Edited by Benjamin Davies

Research Summary on MRI Methods for Predicting Functional Recovery from Surgery in Patients with Cervical Myelopathy.
Rao A et al., Diffusion Tensor Imaging in a Large Longitudinal Series of Patients With Cervical Spondylotic Myelopathy Correlated With Long-Term Functional Outcome. Neurosurgery. Epub ahead of print Feb 23, 2018
Reason for the study
Currently, the assessment of the impact of cervical myelopathy is based largely on patient reported symptoms and commonly quantified using an assessment scale called the mJOA. Patient reported symptoms are very important to take into account when discussing disease severity and function, but imaging measures which explain symptoms are also helpful. Currently there has been limited success in developing imaging measures which explain symptoms and, perhaps more importantly, predict future symptoms and potential recovery following surgery. This last part will be especially important for patients and surgeons determining who will benefit from surgery. 

This study examined a different magnetic resonance imaging (MRI) technique than normal, called diffusion tensor imaging. This technique quantifies how water naturally flows (diffuses). The specific measure they chose (fractional anisotropy) measures the degree to which water flows in a single direction on a scale of 0 to 1 with values closer to 1 indicating diffusion more strongly in 1 direction. In axons of the spinal cord, for example, it would be expected that water would flow consistently along the path of axons rather than perpendicular to the axons. If a group had a worse score, however, it might indicate that they had damage to the neurons allowing water to move more freely. So, the purpose of this study to use fractional anisotropy as a measure of integrity of neurons in the spinal cord and see if this correlated with function pre-surgically and change in function following surgery.

Methods
​This study enrolled patients who were diagnosed with cervical myelopathy over a 5 year period (age range 33 – 81, 18 male, 26 female) and followed these patients for 2 years following surgery. They took their MRI scans and determined mJOA score pre-operatively. For this study they focused their imaging analysis at the spinal level with the greatest compression of the spinal cord. For this analysis they included the whole cord except for the border around the cord because the data they could gain from this area might be incorrect due to the surrounding cerebrospinal fluid. They then compared the MRI scans (fractional anisotropy) and mJOA pre-operatively, and 6-, 12-, and 24-months after surgery. They also compared fractional anisotropy values to those from a group of healthy control participants. 

Results
As expected fractional anisotropy (the MRI measure of neuron integrity) was lower in patients with cervical myelopathy than controls.  It was also associated with the severity of myelopathy before surgery, as assessed by the mJOA (a measure of patient function). 
Also, fractional anisotropy inversely predicted change in mJOA score at 12 months, but was less strongly predictive of change in mJOA at 6 and 24 months. Baseline mJOA also was inversely predictive of change in mJOA at 12 months. This means that in this study, those participants with lower fractional anisotropy (neural integrity) or mJOA (function) scores pre-operatively improved the most following surgery.

Why is this important?
At present, we are unable to predict accurately the response to surgery, and therefore markers which help this will be useful for doctors and patients.  Whilst fractional anisotropy, has been investigated before previous studies using this technique were less successful in drawing a relationship with function. This may be due to improving the methods of collecting and analyzing the MRI data. 
The identified relationship between baseline mJOA and change in mJOA with surgery are therefore promising, but require further research to understand the meaning for patients; for example it is recognized that patients with greater disability typically do improve more as measured by the mJOA, but that does not mean that they achieve a better functional outcome.The mJOA is not a linear scale, where each point gain is equally as important as the next.  
We look forward to watching our understanding of Fractional Anisotropy improve and if it can be of benefit to doctors and patients.


Spinal Cord Swelling: What is it?  Does it matter?

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By B.Samara 
Swelling is a common reaction of your body to any form of injury; remember the last time you banged your finger, or perhaps twisted your ankle?  So unsurprisingly, it can happen to the spinal cord and has been reported in patients with CSM.  However, it is not present in all patients and its significance is not certain.  In addition to this, some studies have now described that the spinal cord can swell after surgery.  The reason for this is unclear and equally what it means for patients is not clear. 
 

On basic MRI imaging, swelling is not that easy to detect; a doctor may look for a slight enlargement of the spinal cord or some signal change.  An alternative method is to inject a ‘contrast agent’ into the patient during the scan.  This is a special form of dye which highlights certain processes, and can be a indicator of swelling amongst other things.  We call this ‘highlighting’ enhancement.  

On this basis, a group from Japan have been looking at spinal cord swelling using contrast and what it means for patients. 

What did the study measure?​
The team from Japan performed ‘contrast MRI’ scans on patients with CSM due to undergo and operation, before and after their surgery.  They then compared what happened to patients who had enhancement and those that did not have enhancement. 

What were the results?
In the study they found that those with preoperative enhancement were more likely to have developed swelling at 1 month after the operation and the swelling was more likely to persist until 1 year post operation. Those who developed swelling had poorer outcomes as assed by a scoring system called the JOA that looks at movement skills as well as sensory loss (problems with feeling). 
What does this mean for those affected?
This sort of MRI imaging is not normally performed during the work up for CSM, but the potential to offer additional information into the severity of the disease and how patients are likely to respond to surgery would be helpful to doctors and sufferers alike. 
It is worth noting that the injection of dye can be harmful to some people, although this is uncommon. 

Therefore, for this technique to be adopted, healthcare providers are likely to need further information, such as:

  1. How does this change the management of patients?  This study only looked at patients who were due to undergo an operation anyway, is spinal cord swelling present in other forms of CSM?  Can it help decide when to perform an operation?

Of course a number of additional MRI techniques are being developed, and it is possible that the information that might be provided by this method, is superseded. 

References
Ozawa et al. Spinal Cord Swelling After Surgery in Cervical Spondylotic Myelopathy: Relationship With Intramedullary Gd-DTPA Enhancement on MRI. Clin Spine Surg. 2018 May 31. doi: 10.1097/BSD.0000000000000664
Cho et al.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229731/


Living with long term conditions like myelopathy

 BY Dr Amalia Gasson
​   
Amalia has been working in adult mental health in the NHS for eight years, currently working in a community mental health rehabilitation team.  She is experienced in working therapeutically with clients with a wide range of difficulties, with a focus on anxiety, depression, relationship difficulties and serious mental health difficulties. She also has an interest in chronic pain and physical health conditions and has completed research into chronic fatigue syndrome. 

Life is stressful. Every day there are lots of events that will fill up our “stress buckets” to varying levels…the computer stops working, we drop a cup, there’s a queue in the shop.
If we have had a bad night’s sleep our stress bucket is already part full before we get out of bed.
Living with long term health conditions means we may have buckets almost overflowing to start the day with and then one “small” stress makes that bucket overflow and everything feels impossible to cope with.

Finding ways to manage our stress levels reduces those times of feeling overwhelmed. It can also have a positive impact on our physical health. There are many very good online resources with tips and techniques that you may find helpful.

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Dr Amalia Gasson: Clinical Psychologist

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Managing energy levels
With any health condition, there is a significant impact on our energy levels. Generally, we tend to go through life doing the most we can in the shortest time. Then our health can stop us in our tracks.
Learning to manage our energy so it feels less of a rollercoaster and more predictable can be tricky. This site has a whole range of self help resources. This link is specifically to the cycles we get into which can make managing energy difficult, and ways to make changes:

https://www.getselfhelp.co.uk/chronicfp.htm

Spoon Theory is another approach to managing energy
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/


Pain

Managing pain levels, like fatigue, links to the ideas of pacing and spoon theory. There are also specific resources about pain such as:
http://www.moodjuice.scot.nhs.uk/ChronicPain.asp

The pain toolkit is created by someone who experiences chronic pain. There are videos on this site and also a pdf download: https://www.paintoolkit.org/tools

The British Pain Society also has helpful information: https://www.britishpainsociety.org/

Mindfulness
It feels like you can’t go anywhere nowadays without hearing someone talking about mindfulness. This is an approach developed from eastern Buddhist meditation techniques and applied to pain management. It was found to be so helpful it has spread throughout healthcare as a way of managing stress.
At its core is a very simple idea, which is surprisingly difficult to put into practice: “Be in the present moment.”

Most of the time we are caught up in thoughts or regrets about the past, or worries about the future, and rarely notice the present. 

​Have you ever driven somewhere, arriving without remembering the journey? Have you ever been reading a book without taking it in? Looking at your watch without actually seeing the time? These are all examples of being “mindless” which is the opposite of being mindful. 

There are some good links about mindfulness here, and several downloads and resources to listen to:
https://www.mindful.org/what-is-mindfulness/
https://www.getselfhelp.co.uk/mindfulness.htm

There are many mindfulness books available. In my work I tend to use Mindfulness for Dummies, by Shamash Alidina, as it is so practical.

One very simple mindfulness practice is to go through all your senses, focusing on each one in turn. By doing this you are totally absorbing yourself in the present, even if only very briefly. 

I’m also a fan of the mindful eating idea, often done with a raisin but this one uses chocolate
https://www.jmu.edu/counselingctr/files/Mindful%20eating.pdf 

A great article from Brain & Life (American academy of neurology) on meditation called Inner peace.
Brain & Life 

We now have our very own INSIGHT TIMER group  for Cervical Myelopathy you can join by entering your details in the form belowCervical Myelopathy you can join by entering your details in the form below


Do you want to join our very own insight timer meditation group? if so please fill in your details below

Compassion
How kind are you to yourself?
When you are having a tough day, do you congratulate yourself on what you manage despite that, or do you have a go at yourself for struggling?

As humans we are generally pretty rubbish at being kind to ourselves. An approach called compassion focused therapy is based on how the human brain evolved and explains why we are so tough on ourselves. 

Paul Gilbert, who developed this approach, believes in sharing all the resources and information:
https://compassionatemind.co.uk/

A summary of compassion focused therapy ideas can be found at :
https://www.getselfhelp.co.uk/compassion.htm
There are some nice worksheets on becoming aware of your levels of criticism and compassion practices under therapist resources at: https://www.actwithcompassion.com/therapist_resources

The centre for clinical interventions is an Australian site with excellent self help workbooks for a whole range of issues including building compassion, managing panic, dealing with distress and overcoming perfectionism (a character trait many of us have but which makes pacing energy nigh on impossible so definitely worth a quick look): http://www.cci.health.wa.gov.au/resources/consumers.cfm
Most have simple questions in the first module to help you assess whether this is a specific area that might be helpful for you to explore further.

Finally, the great thing about the internet is just how many resources there are.
You may have come across many that you could share on a forum like this to help others. 

There are also great Apps like Headspace which talk you through mindfulness exercises.
This is a list of Apps recommended by the NHS: https://www.getselfhelp.co.uk/links2.htm

Here is a list here of mindfulness apps:
 https://www.healthline.com/health/mental-health/top-meditation-iphone-android-apps

If you feel you want further support for your mental health and ways of managing stress, a good first point of contact is your GP who can refer on to primary care therapy. 
There are many parts of the UK where you can also refer yourself – the NHS website has a service finder:

https://www.nhs.uk/Service-Search/Psychological-therapies-(IAPT)/LocationSearch/10008

Mind often offer free courses and support: https://www.mind.org.uk/
The Samaritans have useful information on their site https://www.samaritans.org/, have the phone number 116123 and you can email jo@samaritans.org (they aim to respond to email within 24 hours).

In crisis 
If you feel you are in crisis with your mental health and you are
having – suicidal thoughts and feelings; or thoughts about harming yourself or someone else; or you have seriously hurt yourself…
You can go to any hospital A&E department and ask for help (if you need to, call  999  and ask for an ambulance). There are specialist mental health liaison teams in hospitals who will see you quickly and be able to offer the most appropriate support

Hydrotherapy brings green shoots of recovery to exercise desert.

PictureDelphine Houlton

By Delphine Houlton

On completion of my first ACDF, the surgeon immediately informed my anxious husband that I would never ride a bike again.
That was in 2007 and, to be fair, I have not taken to the saddle since.  After initial improvements, unfortunately many Degenerative Cervical Myelopathy (DCM) symptoms returned. Fusion had not taken place and the discs had slipped slightly.
On discharge from my second ACDF in 2008, with discs caged and this time a soft collar for six weeks, I was told not to put any strain on my neck at all. I still had balance/walking problems and numbness alongside other symptoms.
Neither my GP nor my neurologist ever contradicted the “no strain on the neck” message. Although I did learn that if I had MS I would have been immediately offered physiotherapy and hydrotherapy.

So, I dutifully did not put strain on my neck for more than eight years – my symptoms worsened as I gained weight, and felt rubbish, in an exercise desert.

​After all, logically, the gym was out of the question – I would have fallen over if I had gone on the treadmill thanks to the balance problems. Even in the shopping centre my legs seized up after a three-minute slow and painful walk. Furthermore, my favourites in a previous life, rowing machines and swimming certainly put strain on the neck, as did all weight-training equipment. 

Giving up work and becoming more housebound, in total frustration, I found a private physiotherapist and explained the problems. She was knowledgeable and caring. I worked hard to strengthen my core muscles, improve my balance and more. However, progress was slow and, to be honest, the exercises boring in the longer term. However, she had opened a window of possibility.



I asked my GP directly for a referral for hydrotherapy and she agreed. 
Six months later I was standing chest-deep in warm water – stretching, balancing, walking forwards, sideways and backwards, bending my knees, practising going up and down a step in the pool, sitting on a chair and cycling with my legs and relaxing every muscle as I floated. Movements I had struggled with, or avoided on land for years, were all possible.
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Hydrotherapy


The goal, I was told, was to revive muscle memory. Taking advantage of the ease of movement in the warm water, I was reminding all my muscles how they should be working in a whole range of manoeuvres I found impossible out of the water.

My initial six sessions gave me the confidence, and the ability, to tackle so much more out of the water too. 
Additional sessions have built up my strength and confidence even further. 
I can now tackle many tasks in the garden, go for a short walk on uneven ground in the countryside, and walk up and down stairs without too much discomfort or fear of falling. I can even bend enough to put on boots, socks and tights again! 

Of course, there are still not-so-good days when I need to think harder about where all my limbs are and how to move them. However, the confidence I have regained through hydrotherapy keeps me going and keen to take on more physical challenges at every possible opportunity. 

Unsurprisingly, my mood too has greatly improved – I see a much brighter future ahead rather than the gloom and frustration of a continuing decline in physical abilities and increasingly limited lifestyle.
The transformation hydrotherapy has brought to my exercise desert is clearly anecdotal evidence. Proper research is needed into the benefits of hydrotherapy for people with DCM. 
If hydrotherapy can be shown to improve outcomes, and relieve low mood associated with limited lifestyles, then we must push for the option of hydrotherapy to be incorporated into all DCM post-operative treatment programmes. It also possibly has the potential to help relieve pre-operative problems too.


    Have you used hydrotherapy?
    If so we would like to hear about your experience?

Should you have physiotherapy after surgery?

by A Badran

At present, surgery is the mainstay of treatment for myelopathy.  Whilst it is able to stop further injury to the spinal cord by relieving impingement, the limited capacity for the spinal cord to repair leads to only partial recovery.  Therefore strategies to improve recovery after surgery are a major unmet need in myelopathy. 

This has generated much interest in postoperative therapies to maximise postoperative recovery, including the development of neural repair medicines.  Unfortunately, whilst showing early promise, these are not yet ready for every-day use. 

Physiotherapy on the hand, is routinely employed for many related health conditions, and is considered to significantly contribute to recovery after conditions such as Stroke and Spinal Cord Injury. 

Our ambition therefore was to look at the medical literature to see if there was any suggestion it could be of benefit to patients with myelopathy. 

How did we go about this?

We performed something called a systematic review and this has recently been published in the journal of Clinical Rehabilitation. (1)  This is a research technique which rigorously screens databases of medical literatures.  Typically this is done in three stages:  Firstly, a search strategy (string of relevant words) is put together.  This is then applied to medical literature databases and the results of the search are manually screened, initially by their title and summaries.  Any articles considered potentially relevant and then read in full to evaluate their relevance to the research question.  

What did we find?

​We found only one study commenting on the effects of physiotherapy after surgery for DCM. This is a small retrospective study of 21 patients with DCM that underwent surgery and then rehabilitation. However it was a poor quality study, and spontaneous recovery after surgery could not be distinguished from the effects of physiotherapy specifically. Although the study concluded that rehabilitation improved functional status, the small study size and its design make this conclusions very tentative.

Therefore, unfortunately, we identified that the effect of postoperative physiotherapy in DCM has been poorly studied and we could not make any recommendations about whether it should be routinely provided. This does not mean that physiotherapy is harmful or should not be provided after surgery for degenerative cervical myelopathy but simply more investigation is required.  

Pleasingly there are now two registered randomised controlled trials, one in Taiwan and another in Canada, which will hopefully shed light on the effects of postoperative rehabilitation in DCM.

References

Can we detect myelopathy before symptoms develop?

By J.Hamilton. 

Why is ASCC relevant to Degenerative Cervical Myelopathy?
Asymptomatic spinal cord compression (ASCC) is very common; studies of healthy volunteers has identified between 8 and 59 in every 100 patients who underwent a cervical MRI had it! [1]  These are the same compression features seen in DCM, however less that 1 in a hundred patients from these studies had any symptoms of myelopathy….   Hence the term ASCC (as opposed to DCM, which is defined by the symptoms of the condition, such as pain and weakness).

However, we know from other studies that some people with ASCC go onto develop DCM over time and this has led to the suggestion that ASCC actually represents the earliest stages of DCM.  In order to further evaluate this, researchers from North America have been using new MRI imaging techniques to better understand asymptomatic cord compression and to see whether the compression is affecting the spinal cord. 

What was the aim of the study?
The study, undertaken at the University of Toronto had two primary aims:

1)Can ASCC be automatically diagnosed by using computer analysis of MRI images?
2)Can damage to the spinal cord be visualised using new MRI techniques in ASCC? 

How did they measure subclinical damage and cord compression?
The group recruited 40 individuals to the study, 20 of which has ASCC and 20 had no evidence of cord compression.

Aim Number 1
The performance of a computer programme to diagnose cord compression was compared to a group of experts and found to be just as good.  

Aim Number 2:
The group then compared people with and without ASCC using a number of new techniques to look at the structure within the spinal cord, these include the following
The researchers found that some of these new imaging techniques were able to detect changes within the ASCC group that are also seen in DCM; specifically, FA, MTR and T2*WI WM/GM.  When compared to uncompressed individuals, a combined score looking at a combination of parameters was very accurate at spotting tissue injury. This indicated that there is a degree of tissue damage before symptoms in ASCC, and that this perhaps represents the early stage of degeneration that progresses into degenerative cervical myelopathy. 

What to make of this?
This study is informative to clinicians, as it reflects a way to diagnose ASCC early on before significant damage has been done to induce symptoms.  The success of the computer diagnosis also means ‘expertise’ can be transferred into any hospital setting.  This is exciting, as we know that if we could detect DCM earlier, and offer treatment sooner, patients would make a better recovery.  

The finding that ASCC causes tissue damage also may make us question our definition of myelopathy. Currently, symptoms are the definitive characteristic of myelopathy, but as advances in technology allow us to detect spinal cord damage in the absence of symptoms, this may change. The symptoms of myelopathy may reflect a later stage of damage that occurs after what we can now see using MRI. 
Furthermore, the findings of similar tissue injury in ASCC to DCM indicated a possible definitive link between the two disease states. The researchers compare the two as being similar to “pre-diabetes” and “diabetes” (a scenario where people who are struggling to handle their blood sugars are identified even earlier, with some able to make changes to prevent the onset of diabetes). Perhaps what we are seeing here is a “pre-DCM” state.  This still requires more work to be confirmed.  We look forward to following the research story further! 

Myelopathy needs you!

Share your experience of CSM and Pain Here

Many patients with CSM report pain, but this experience and its impact is unknown. So can you please take a few minutes and help us with this survey,This survey aims to find out more about pain in CSM to support much needed research in this area. 
References
1.
Prevalence and Imaging Characteristics of Non-Myelopathic and Myelopathic Spondylotic Cervical Cord Compression. (2016). Prevalence and Imaging Characteristics of Non-Myelopathic and Myelopathic Spondylotic Cervical Cord Compression. http://doi.org/10.1097/BRS.0000000000001842
2.
Can microstructural MRI detect subclinical tissue injury in subjects with asymptomatic cervical spinal cord compression? A prospective cohort study. (2018). Can microstructural MRI detect subclinical tissue injury in subjects with asymptomatic cervical spinal cord compression? A prospective cohort study., 8(4), e019809. http://doi.org/10.1136/bmjopen-2017-019809

Community Champion Frank Dutton shares his top fundraising tips

As a Myelopathy.org Community Champion, I had the honour of holding the charity’s first fundraiser at my local football club.

PictureCommunity Champion Frank Dutton

Myelopathy.org and Myelopathy Support on Facebook have been a great help for both me and my wife since my diagnosis in 2016. Since then, life has been difficult to say the least. Cervical myelopathy, and the accidents it has caused, have led to me going under the knife for no less than six major surgeries. These have significantly affected my body and its ability to cope with everyday life.

I created a ‘lucky numbers’ board featuring 1-100. I then made a list of those numbers with spaces next to them for people to write down their names and telephone numbers. It cost £1 per number and I decided on a winning pay-out of £25 which, if all the numbers had been taken, would deliver a tidy profit of £75 for Myelopathy.org. 

I set my table up in the club room. I took along some laminated photos of people’s CT scans, including my own, as visual aids. I also made copies of one of the charity’s media releases about the condition and the need for early diagnosis, and the basic facts about myelopathy. These are part of the Myelopathy.org fundraising pack. 

It was very interesting to see how people reacted to the photographs and then responded to the information in the leaflets and that I was able to supply about myelopathy. 

The fundraising experience was a positive one and the fact that I was able to raise £71.10 (no idea where the 10p came from) was a bonus. I am now really looking forward to taking part in the next fundraising event. So, if you have any ideas or want to hold a fundraiser yourself, please let me or one of the Myelopathy.org team know.

My top five tips for fundraising.
1) Plan where you want to hold your fundraiser and contact relevant authority/fête organiser/owner etc for permission

2) Share, share, share. Use social media, such as Facebook, WhatsApp, Instagram etc, to gain maximum promotion and coverage for your fundraising activity.

3) Make it personal. Tell your own story so that people can understand more about your experiences and your reasons for fundraising. Sometimes that personal touch/story can elicit donations.

4) Remember your inspiration. There’s a reason why you are supporting this cause. Hold on to your inspiration and bring all that enthusiasm to your fundraising activities.

5) Have fun. If you are not enjoying yourself, you will give off all the wrong vibes. So, smile and perhaps rope in a friend or two to help so that you can jolly each other along.


    If you would like to organise your own fundraising even then please leave your details below