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A new audience for Myelopathy.org

A new audience for Myelopathy.org

Awareness of myelopathy among non-specialist doctors is not as good as it should be. This fact is at least partly to blame for many patients being misdiagnosed, diagnosed too late or not diagnosed at all. This must change.

At the beginning of September 2018, we launched a Myelopathy.org Student Society. The aim of this new part of Myelopathy.org is to target current medical students, who are the doctors of tomorrow.

Professor Hutchinson with myelopathy students
Professor Hutchinson answering students’ questions after his talk

 Our society aims to improve myelopathy education in UK medical schools, to raise awareness of myelopathy and to get students and doctors interested in and enthusiastic about myelopathy!

So far we have hosted several academic talks in the School of Clinical Medicine, University of Cambridge. Highlights from our first term include an inspiring talk on neurosurgical careers from Peter Hutchinson, Professor of Neurosurgery in Cambridge and a fascinating talk from Consultant Neurologist Dr Sybil Stacpoole on spinal disorders for medical students, which included a wealth of interesting real cases, including myelopathy. Our talks have been very popular with attendance averaging over 50 students and junior doctors per talk!

We have established two annual Myelopathy.org student awards: an essay award and a research award. These are open to all UK medical students. We are excited about the interest and enthusiasm these awards will stimulate in myelopathy.

We have been successful in securing generous sponsorship from several corporate sponsors. Doctors Academy have provided us with refreshments for our events and prizes for our national awards; JP Medical and Pastest provided us with prizes for our national awards; generous funding donations have been made by Wesleyan and the Medical Defence Union. We are incredibly grateful for the generosity of all our sponsors and so excited by the interest in Myelopathy from these significant medical companies!

Dr Stacpoole teaching myelopathy
Dr Stacpoole’s teaching on myelopathy was met with great enthusiasm.

Finally, we are leading a national myelopathy research study and are delighted that to have recently received ethical approval and insurance to commence in the next few weeks. More information to follow later this year!

Please look out for our upcoming updates on our section of Myelopathy.org, like and follow us on our Facebook Page and keep up to date with our upcoming activities. You don’t have to be a medical student to join in!

Prizes for students by myelopathy.org
Some of the prizes for the Myelopathy.org national medical student awards

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

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  

Headaches more common in CSM

​Cervical spondylosis, more than a pain in the neck?

by J.Hamilton

For some migraines is just another word for headache, but in medicine it refers to a specific type of headache characterised by severe head pain that can last from 2-72 hours, are a common disorder and can be incapacitating to people who suffer them. Migraines are common, with estimates suggesting up to one billion people are affected worldwide. Various triggers may cause migraines, causing a sequence of events that lead to head pain. It has been suggested that cervical spondylosis, the degeneration of the bones of the neck, may initiate migraines, but little research has been done on the topic.

With this in mind, a group at the China Medical University wanted to determine if there was an association between cervical spondylosis and the likelihood of suffering from migraines. 

​How was it done?

​The group used a health insurance research database in Taiwan.  From this database,  a group patients with and without cervical spondylosis were selected.  The group without spondylosis were matched, such that they had similarly ages, genders and presence of other illnesses such as diabetes.  Over the next 10 years, between 2000-2010, the patients who developed migraine were noted. At the end of the study, the group looked at the relative risk of getting migraines and compared them between the groups.

Do you suffer from headaches or pain and have CSM?
Researchers from the University of Cambridge what to hear about your experience


​What were the results? 

​The group of Spondylosis sufferers numbered at 27,000, compared to 111,000 without spondylosis. When they looked at the rate of people acquiring migraines each year, they found that out of those with Spondylosis, 5.16 people out of 1000 per year acquired migraine, compared to 2.09 per 1000 people per year in people without spondylosis. When they looked at the risk of getting migraine, using a statistical method known as “hazard ratios”, which compares the relative risk of getting a migraine between two groups, it was found that comparing patients with and without spondylosis patients gave a risk of 2.03. This means that people with Spondylosis are twice as likely to develop migraines as those without. When looking at the data more closely, the researchers found that this risk was further increased in patients with myelopathy and spondylosis as opposed to spondylosis patients with no myelopathy.  As expected, they also found that women and younger individuals were more likely to develop migraines, a well described association.

​How could this happen?

​Although headache has not been considered a ‘classical’ feature of neck disorders, it has been proposed for many decades that neck disorders can cause headaches.  This led to the creation of a condition called ‘Cervicogenic’ Headache (literally ‘neck generated headache’).  For some professionals this remains a controversial condition, as how a neck condition can cause a headache remains unclear.  The proposed mechanism is based on something called ‘sensitization’, a well described pain process by which the regular perception of pain can alter the ‘wiring’ of the brain and spinal cord, make them more sensitive: so what once felt like a tickle, could become more like a stab.  For Cervciogenic headaches, the theory is the neck pain from spondylosis is the regular pain, and because the pain pathways from the neck are shared with some of those of the head, these wires can cross and lead to headaches.  This has previously been discussed by Dr Lavin, Neurologist for Myelopathy.org, including an alternative theory related to altered blood flow.  

​What does this mean for Myelopathy sufferers? 

​This study is part of a number of recent articles helping to shine the spotlight on headaches and CSM.  Whilst it cannot show exactly why it happens, the association is becoming harder to ignore and makes it less likely to be simply a coincidence.    Hopefully these studies will help to raise the profile of headaches in CSM, to trigger the research necessary to further understanding and develop treatments – watch this space!
 
In the meantime, some small things that can minimize your risk of migraine include: remain well hydrated, reducing your caffeine intake (although some people find caffeine helpful), as well as ensuring a regular sleeping habit. 

Investigating exercise after anterior cervical discectomy: what should we advise?

My name is Dr Teena Fernandez. I am a GP in North Wales currently undertaking research as part of my Masters in Sports and Exercise Medicine at Nottingham University. During my studies my husband sustained a cervical spine injury resulting in a 2 level anterior cervical discectomy and fusion and we found little advice or evidence on returning to sport following such surgery.

Can you help researchers from the University of Nottingham?


We did not know if he could go dog walking, do martial arts or do manual labour for 2 hours a day? I subsequently undertook research which only identified expert opinion on returning to sport. I have now (with the help of a neurosurgery consultant) decided to find out how people return to sport following 2 level anterior cervical discectomy and fusion.

I plan to undertake a qualitative project interviewing approximately 8-16 participants to find out whether they have returned to at least 2 hours of exercise a day following the surgery. I would like to know whether they developed problems such as neck pain or pain or loss of function of the arms and legs with exercise.

Being a GP, I hope I can interpret the interviews and help people who require advice on getting fit after surgery. 

Please have a look at my advert and get in touch if you would like to be involved.

Dr Teena Fernandez
MBBS MRCGP DFFP DRCOG BMEDSCI PGCE

Why does this matter? A word from the director

The role of exercise after surgery in CSM is largely unexplored.  However there is much to suggest that it can enhance recovery; indeed this is well demonstrated in animal studies of spinal cord injury, underpins the basis for spinal cord injury rehabilitation centres and is starting to be evidence based in traumatic spinal cord injury.  So at Myelopathy.org, we are pleased to support this research study.   It should be noted, that this study is not just for CSM and looks in particular at higher performance athletes (exercising more than 2 hours per day), but no doubt this will have some relevance and we look forward to seeing the results.    Ben Davies, Director Myelopathy.org  

Worried about participating in research?

Myelopathy.org ensures all affiliated research meets UK Research Standards.  A useful video has been prepared by  Connected Health Cities and The Farr Institute to provide an overview of how health research is conducted and overseen in the UK, including how your data is looked after and used.  If you have any further questions or concerns, please get in touch. 

In search of Myelopathy man

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By Delphine Houlton 
Our Facebook Myelopathy Support group, founded by Iwan Sadler, now has more than 1,000 members worldwide.
A great success story which is set to grow as awareness of Degenerative Cervical Myelopathy (DCM) increases. 
There is little doubt that social media is revolutionizing health care. A US study by Pricewaterhouse Cooper in 2012 showed that one third of US consumers use social space as a natural habitat for health discussions. Meanwhile a 2010 report by the Pew Internet and American Life Project showed one half of e-patients living with chronic diseases take advantage of user generated information.

Using this research and more, Pius Boachie writing for http://www.adweek.com/digital/ demonstrates the importance of Facebook groups for people with health issues sharing experiences, offering support and raising awareness and funds.
Social media has also given patients opportunities to vent their frustrations and anger as well as following up issues keeping healthcare providers on their toes.
But it is not just of benefit to the patients. Pius Boachie claims 88% of doctors use social media to research pharmaceutical, biotech and medical devices, and 60% of doctors say social media improves the quality of care delivered to patients.
However, at Myelopathy Support we are facing a challenge and one that not only Iwan has noticed. Our Facebook group has attracted many more women than men. In fact, 76.7% of Myelopathy Support members are women and just 23.2% men!
The specialists tell us that DCM does not discriminate between the sexes, so what is going on?
According to research by Statista, women have been leading the way on the major social media platforms, such as Facebook, for a long time but the gap is narrowing. Now the USA has 230 million Facebook users of which 52% are women and 48% are men. 
So, men are aware of Facebook and interacting but there is a possibility they are using it differently. At least this is an argument presented in www.socialmediatoday.com in 2016.
The authors say research reveals men are more likely to use social media to seek information or new relationships while women use platforms such as Facebook to connect with people and nurture existing relationships. 
Women are more likely to share personal issues while men prefer more abstract topics. On a more negative note, men were much more commonly trolling on social media or engaging in aggressive and even abusive language. In conclusion, they accept that men and women communicate differently.
This sort of argument can be compelling along the lines of the popular Men are from Mars, Women are from Venus theses. I’m not a huge fan not least because I favour nurture over nature and see most styles of communications as culturally constructed with culture very clearly an ongoing process – a verb and not a noun.
Irrespective of my preferences, we do face the challenge of attracting more men to join and to benefit from the information, support and expertise available at Myelopathy Support on Facebook.
Should we be doing more on YouTube (54% male users) who spend, on average, twice as much time as women do on the site per week? Should we signpost the vast amount of detailed information available at Myelopathy Support more clearly? Should we run an invite-a-man initiative or offer a prize to the 500th man to sign up?
All suggestions gratefully received!  Email: info@myelopathy.org



Thinking about applying for disability in the USA?

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Here are a few helpful things to get you started. 
Firstly  you need to  go  the Social Security Administration page. You can apply online, or have the forms sent to your home.  

Social Security Benefits (SSI)
As far as Social Security benefits, SSI is a set disability amount which is awarded for those who have not worked enough years or haven’t paid enough social security tax into the system. For example, the maximum amount right now is $750/monthly. SSDI benefits are disability benefits awarded based on wages over the years and paid into Social Security.  You could range anywhere from a couple hundred to a couple thousand dollars monthly. Both benefits are issued through the social security administration. 

You need to be deemed disabled for an expected period of at least 12 months. For disability, benefits, especially SSI, most applicants are denied the first time. That’s typically when one obtains a lawyer to handle the appeal. It just seems to be common practice.  It can take months to finally get approved.  Obviously depending on the level of severity, but  it can take anywhere from 6 months to a little over a year. 

Medical Coverage
As far as medical coverage, there are programs through public welfare and types or medical coverage available associated specifically with disability. One is directly related to SSI recipients, one is disability clients with no income/awaiting benefits, there is one for those who work but fall under certain income limits, one for those receiving SSDI who fall under certain income limits, and for those who receive SSDI and receive Medicare part B through social security – if they make too much to qualify for the welfare medicare, there’s another income limit to see if welfare will at least pay their Medicare B monthly premium amount, so they would at least have that premium amount back in their pockets in the SSDI check.  All of those types of medical are applied for through Dept. Of Human Services /formerly Dept. Of Public welfare. 

Cash Assistance
 If anyone in the US is looking for cash assistance while awaiting disability, they can also apply through Dept Human Services.   For example, the guidelines to qualify for cash assistance benefits is that you have to have care/control of a minor child. So a parent/parents with custody.  The amounts are very low though, right now, if a parent of 2 applies for cash assistance, and has zero income, the maximum grant amount monthly for that 3 person household is only $403. Better than nothing but clearly doesn’t touch the bills. There are job search requirements with this program. But if you are disabled, you have a form completed by your physician and are waived from those requirements. We also have what is called a DAP- Disability Advocate Program, and they can help individuals seeking SSI throughout the process.

Each state has different programs to help the disabled offset costs. 
Some states have fuel assistance. Every year , a household gets a certain amount of money paid to their heat supplier for heating through the winter. 
Most disabled people , if qualified can get SNAP, which is the food stamp program. 

If you’ve got young children under the age of 5 , there is the WIC program which delivers food to low income mothers. 
If you are disabled, and get SSDI, your children get a small disability check also. That lasts until they are 18, or have graduated from high school. 
Most states have food banks, if you need food please use them. 
Churches also have programs for food, the elderly, and the disabled. Ask your pastor for any information or programs that could help your family. 

Helpful links: 
SSA.GOV
 
Disability Benefit Centre 

Information kindly collated and presented by Margot Miller and Melissa Rodriguez 
If you have any relevant information on the benefit  system  for the USA and would like to see it featured please get in touch: info@myelopathy.org 

All this information  is now available at www.myelopathy.org/disability-benefit-advice-usa.html


Under pressure: compressed arteries in DCM

by Max Stewart

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Freddie Mercury immortalising the Queen song ‘Under Pressure’

One of the most perplexing things about DCM is the role of spinal cord compression in the disease. It easy to think that the picture is a simple one: as the spine degenerates (joints wearing out, ligaments hardening and bones shifting position) the spinal cord gradually becomes compressed. This compression damages the spinal cord, kills off nerves cells and leads to the development of myelopathy. However, as we’ve mentioned, many people can have compression of the spinal cord but have no sign of myelopathy, while others can have extremely severe symptoms from the same amount of compression. It seems that we need to look at subtler imaging signs to better differentiate between people with and without DCM. 
It appears that the story isn’t quite as simple as we might initially think. Could there be other factors, beyond gross compression of the cord, which determine whether or not someone develops myelopathy? 
A group of researchers at Wenzhou Medical University in China, led by Wu Shiyang [1], thought that one such factor could be reduced spinal blood flow. They reasoned that the same degenerative changes that compress the spinal cord in older people could also compress the blood vessels that supply it, the so called ‘spinal arteries’ (Figure 1). If these arteries became compressed there would be less oxygen reaching the cord, leading to death of nerve cells and inflammation of the surrounding areas. This damage to the spinal cord could lead to the symptoms of myelopathy. 
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The cervical spinal cord is supplied by a single anterior and two posterior arteries

What did this study involve?

To test whether spinal artery compression is associated with myelopathy, the Chinese researchers decided to look at the blood flow in one of the biggest arteries supplying the spinal cord, the anterior spinal artery (Figure 2). They compared flow in this artery between healthy people and people with DCM. The researches also compared blood flow before and after CSM surgery, to see if there was any link between improvement in symptoms and restoration of blood flow to the cord.
​To look at blood flow, the researchers used an advanced technique called ‘dual energy computed tomography’ (DECT). Normal CT scans are used widely in hospitals, and some groups have tried to use them image blood flow in DCM. However, these efforts have been unsuccessful [2]. Shiyang’s group are the first to use the more advanced DECT instead, which is able to produce better pictures of blood movement within arteries. DECT is complicated, but here’s a (very) simplified explanation. First, Iodine is injected into one of the patient’s arteries. The patient is then placed in the CT scanner. Two sets of mages are produced; one using a high energy X-ray beam, one using a low energy beam. Body tissues look similar in both types of X-ray, but iodine looks very different. By combining the two sets of images, a computer is able to focus on body structures that contain iodine – in this case, the arteries. The computer can then see how much iodine is flowing through the arteries and use this to work out blood flow.
​The study involved 50 patients with confirmed DCM and 10 health patients. Both groups underwent DECT scans. The DCM group had their level of disability measured using the JOA score. The DCM patients then had surgery – each underwent an anterior cervical discectomy and fusion. The DCM patients then had another DECT scan after surgery (to see if blood flow in the arteries had changed) and then had JOA scores calculated again one month and six months after surgery. 
​Researchers then looked at:
1. The difference in blood flow between pre-surgery DCM patients and healthy patients
2. The difference in blood flow between pre-surgery and post-surgery DCM patients
3. Any link between change in JOA score (disability) and change in blood flow after surgery
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Figure 2 – Image produced by the DECT scanner, which shows blood flowing through the anterior spinal artery (white line marked by red arrow). [Taken from reference [1])

​What did this study show?

There were three important results from this study:
1. Blood flow through the anterior spinal artery is significantly lower in pre-surgery DCM patients than healthy patients 
2. Surgery leads to a significant increase in spinal artery blood flow in DCM patients
3. Patients who had bigger improvements in blood flow after surgery had greater recovery in JOA score (i.e. were less disabled) 6 months later 

​What might these results mean for the future?

​This study suggests that reduced blood flow to the spinal cord could be associated with the symptoms of myelopathy and that improvement in blood flow could help predict to recovery from surgery. These links between spinal artery compression and myelopathy could be important because:
1. They could help us better understand the underlying processes which damage the spinal cord in DCM, which in turn would help us develop new treatments. These results could even help explain why spinal cord compression on imaging doesn’t always cause DCM – perhaps compression of the spinal arteries is also required for symptoms to develop. 
2. They could help us diagnose myelopathy earlier. Reduced spinal blood flow could now be considered a sign of DCM, which we can combine with our existing diagnostic makers (MRI scans, neck pain, disability etc). The earlier we diagnose myelopathy the sooner we can operate and the less severe lasting disability will be. Remember: time is spine.
3. They could help us assesses how successful surgery has been and predict how much recovery we can expect. A big improvement in blood flow suggests that recovery will be better. This clarity can help us plan your future care and helps you know what to expect.
4. They could help us compare treatments to see which is best. Surgeries that produce the bigger increases in blood flow may lead to better recovery than surgeries which produce smaller improvements in blood flow. Shiyang’s group has already planned studies to see if DECT can be used to compare outcomes of anterior vs posterior decompression operations.

​What are the limitations of this study?

​Obviously, use of DECT and study of blood flow in general is still at a very early stage. Most hospitals don’t have access to DECT yet, so it will be a while before we could think about using it in diagnosing DCM. We’d also need to confirm that there is a consistent difference between healthy and DCM patients that is big enough to detect. Furthermore, we don’t know what processes reduced blood flow is actually triggering to the spinal cord. Finally, it is likely that compression of arteries is only one of many changes and disease processes that drive DCM. Time will tell just how significant the contribution of reduced blood flow is to the disease. 

References

We are pleased to welcome Tim Boerger to the team

PictureTim Boerger

We would like to take this opportunity to welcome Tim Boerger to the myelopathy.org team,he will be contributing to the blog by writing summaries of recently published research.
Tim Boerger is a Ph.D. student in rehabilitation science at Marquette University in the United States. His dissertation research focusses on walking and balance function in patients with cervical myelopathy. He himself had an Anterior Cervical Discectomy and Fusion in November 2016 for a cervical disc herniation with myelopathy. Prior to all of this, he worked for several years providing rehabilitation for patients with leg, shoulder, back, and neck injuries.

 Tim’s  Story Pre-Op
A little about myself, I am currently 29 years old living in Milwaukee, Wisconsin, United States of America and for work am a graduate research assistant and PhD student at Marquette University. What led up to me being diagnosed with myelopathy occurred a couple years ago back in summer of 2016. My wife and I had just purchased a house and the best I can figure, I hurt my neck while we were moving.
Fast forward about 2 weeks (to early August) and I started to develop mild to moderate shoulder and neck pain along with some nasty “knots” in my heck and shoulder. Since I couldn’t think there was any immediate injury, I assumed this was due to sleeping wrong or improper ergonomics at my workstation. This was persisting for about 6 weeks to late September, and I was managing the pain with some Aleve. 

Now it’s late September and I woke up one Saturday around 4:30a.m. with the worst physical pain I have ever experience. It quite honestly felt like every muscle in my entire left shoulder, arm, and forearm was spasming and cramping simultaneously with a sharp, aching, and burning pain in my shoulder radiating down my arm. This would spike any time I tried to move it. Eventually that day, I started to also feel numbness and tingling develop in my left thumb and index finger. At this point, I SHOULD have known what was going on. I’m an athletic trainer (which in the U.S. is a profession that specializes in injuries and illnesses related to physical activity and athletics) and a PhD student in rehabilitation science. I’ve taken 8 graduate credits of neuroanatomy and neurophysiology. I should have seen it, but I was blinded by my own stubborn pride. “I am too young for something like that to happen without a serious injury” and “I have no mechanism of injury” were my thoughts. “It must just by a tight muscle pinching a nerve root from all these knots” was my conclusion.

I. Should. Have. Known.
I ended up going to a local walk-in clinic the next morning and, sure enough, the diagnosis was herniated disc. They prescribed me some weak pain relievers and said they didn’t expect them to work and that I may just end up in the E.D. that night asking for something more serious. So, we went over to the E.D. right away. They gave me a prescription for Percocet and got me an MRI of my cervical spine. The MRI results came back not good. *WARNING medical jargon*: I had an extruded C5-6 disc herniation with severe foraminal stenosis (narrowing of the hole for the nerve root to go out to the body), mild-moderate cervical canal stenosis (narrowing of the hole for the spinal cord), and mild spinal cord deformity. I was scheduled a follow up appointment with a neurosurgeon a couple weeks later. I, however, wanted to try and get seen a little sooner and start on some conservative treatments so I managed an appointment with a Physiatrist in the mean time. Her impression was that the injury was not that significant and, in particular, the spinal cord deformity wasn’t too serious since I had plenty of room for the spinal cord still. I got started on physical therapy. About a week after that, I had a couple physical therapy sessions in and saw the neurosurgeon. Up to that point, PT wasn’t really helping the pain that much, and the pain was too bad to be able to do any exercises. At the surgery visit, the surgeon was less optimistic. She found something that wasn’t present before, known as hyperreflexia, in my left hand. This meant that the the compression on the spinal cord was an issue after all, and she was pretty confident I would not be able to recover without surgery.
What is hyperreflexia: (*WARNING more science-y stuff*: basically the brain sends inhibitory signals down to the motor neurons in the spinal cord to prevent reflexes like the knee tap reflex from being too strong. If the nerve sending that descending signal is compressed, the signal doesn’t get through and the reflex is stronger than it should be…. i.e. because of the compression, there is less information from the brain getting through to the motor nerves in the spinal cord to tell them to be quiet.)
Surgery
The surgeon was willing to continue trying conservative therapy on the condition that if I didn’t notice improvement within 6 weeks to 3 months, I should go ahead and schedule surgery. I tried a couple more weeks of physical therapy. This ultimately didn’t help at all and may have made me feel worse in the short term. In this time, I had a medical genetics test, that I basically bombed due to pain, and tried my best to struggle through classes and work in spite of the pain. After about 2 weeks, I had a follow up with the Physiatrist I had seen. She confirmed the hyperreflexia the surgeon had observed. We had a good discussion about the implications of that, and discussed that she also now believed I needed surgery. 

By this point, I had already failed physical therapy (in the sense of it became evident that PT wouldn’t help) and started on the path to schedule surgery. At work, my boss/advisor (since that is the same thing in a lot of PhD programs) and I discussed the implication on classes and work. I ended up needing to drop out of classes for the semester and ended up having to retake the next couple semesters.
Symptom wise, I also started to develop tingling in my right hand in my thumb and pinky fingers, which would indicate greater seriousness of the compression on the cord. About a week after that, I noticed tingling in my right foot and leg. A few days after that, I noticed that my walking was being impacted. Specifically, I couldn’t lift my foot enough (dorsiflex) to clear my toe off the ground when I swung-through. This caused me to almost trip and fall a couple times. Therefore, I asked my advisor (a physical therapist as well) to check the strength of my right ankle. Sure enough it was a little weak compared to the left ankle. This was a week before my surgery was scheduled.
I ended up having surgery on Nov 15, 2016. The surgery went well though the overnight stay in the hospital was a bit rough. I was in quite a bit of pain, they wouldn’t let me have anything by mouth all night because I vomited after drinking shortly after surgery, and I needed a urinary catheter a few times. I was able to pass my inpatient physical and occupational therapy testing right away and went home the day after my surgery. 
The surgical procedure is referred to as an Anterior Cervical Discectomy and Fusion. Briefly, that involves entering through the front of the neck to access the spine from the front. This has better outcomes because they can basically slide between layers of muscles rather than cut through them, like they would have to do from the back. In my case they then took out part of the disc, put in a cadaver bone spacer between the vertebrae, and put a titanium plate over the whole deal. While before surgery, they didn’t think I really had a case of myelopathy, due to the onset of symptoms in the other hand, foot, and walking problems the operative diagnosis was a herniated cervical disc with myelopathy.

Post Op
After surgery, I continued to be in pain from the surgery for several weeks. I had some problems swallowing for about a week or two, and sleep was uncomfortable at times for awhile

I returned  to work on January 5th with restrictions. Basically, I could only do computer work for awhile until the two vertebrae fused. I was on a 10lb and then 20lb weight restriction since surgery. At my 3 month follow up appointment I had a couple of x-rays taken in maximal extension and flexion to see how the fusion was progressing. everything is going well on that part. because that was going well, I was cleared to return to work without restrictions. After this point, I spent a lot of time working on re-strengthening my arm and working on my balance. Also by this point my pain levels were much better, and I was able to return to classes for the Spring semester of 2017 which began in January.
At the 6 month follow up I was continuing to do better, having less and less pain and increased strength. Likewise, at the 12 month post op follow up in November 2017 things were going quite well and I was discharged from the care of the neurosurgeon for this surgery. I still have some pain intermittently at 1.5 years out from surgery, especially if I neglect my posture which I manage with over the counter Tylenol or Aleve. All-in-all, I am doing very well all things considered. 


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