Amongst patients with CSM, most have a 'normal' looking spinal cord, but others can have changes, including high signal (aka the 'white spot') on T2 images, with or without low signal (black) on T1 images.
A group from North America (1), in the largest such study to date, having been looking specifically at changes within the spinal cord. Their theory was that the amount of spinal cord damage, and therefore the severity of disease and likelihood of improving after surgery, related to this sequence of changes. I.e. Normal cord was better than a white spot, but a white spot with corresponding blackness on T1 was worst of all. The white spot is thought to represent oedema, whereas the blackness loss of spinal cord tissue.
The authors analysed over 400 MRI scans of patients who went on to have surgery for CSM. Just as they thought, they found that these image changes did relate to the severity of myelopathy, and likelihood of responding to surgery.
More specifically, they found that the 'black' low signal on T1 images was the most important feature; most likely to be found in more severely affected patients, who responded less well to surgery. A 'white spot' on its own was only very slightly worse than normal looking cord, however 'white spots' at multiple levels was associated with more severe myelopathy.
This is a high-quality study, involving a large number of patients from across the globe. This is a very interesting study and moves the field forwards. The clinical relevance of a 'white spot' was uncertain, and a topic of constant debate; some studies had shown it was a sign of bad myelopathy, where as others that it was not indicative of severity (2). The finding here of the significance of one vs many white spots may explain these previously inconsistent findings. Regardless the relative, greater importance of low signal (black) on T1 images is new.
These image findings are not the be all and end all; some patients with spinal cord changes on their MRI do very well with surgery and vice versa. These findings therefore, at least for now, are only a guide.
1. A.Nouri et al. The Relationship Between MRI Signal Intensity Changes, Clinical Presentation, and Surgical Outcome in Degenerative Cervical Myelopathy: Analysis of a Global Cohort. Spine. May 2017.
2. L.Tetreault et al. A Systematic Review of MRI Characteristics that Affect Treatment Decision-Making and Predict Clinical Outcome in Patients with Cervical Spondylotic Myelopathy. Spine August 2013
We speak to fellow sufferer and artist Margot Miller from Putney, Vermont. USA. Margot was diagnosed with myelopathy in August of 2007 at the Mayo Clinic in Jacksonville Fla. where she underwent four emergency spinal fusions. "I'd say I'm traumatized by them and that they happened without a second to plan or think about surgery, By the time the MRIs came back, there was no go on home and schedule this, your being admitted.
Margot tells us that having myelopathy has affected every aspect of her life." I could no longer do my job. I was a Real Estate developer and agent, and an artist part time. I could no longer sell Real Estate. Most prominently, I lost all the function in my left arm which I'm still trying to deal with today. I can no longer ski, swim laps, play golf, knit....some of the things I really did enjoy.
This did not deter her in anyway ,she now concentrates her determination and drive into her Art and runs a full service Art Studio in Putney. I show my work in museums and galleries all over the country and beyond. I sell prints of my work, which I love to do. I have 3 different sizes and use all kinds of paper, linen, canvas, metallic, gloss, you name it. I've taught classes, I do commissions. Plenty of charity work and open studios.
Margot explains that being diagnosed with myelopathy can have so many negatives for example "I can't keep up with my friends or family, they don't understand that I can't keep up with their schedules. sometimes the pain can be overwhelming, painting helps me in the middle of the night when I'm in pain. It seems to subside a great deal when I really get into it.
There is also positivity to my diagnosis my paintings have gone further than I could of dreamed. Museums I never thought I'd get to. Now I have the opportunity to raise money for Myelopathy research through my artwork, I do a lot of charity work for years after I was injured I ran a project called the Art for Comfort project. I installed art in homes, hospitals and hospice. I still do that today. I felt it would comfort patients and it has.
Margot explains "it felt as if it was a miracle when I came across myelopathy.org "I had never come across a brochure, or pamphlet at any medical facility I'd ever been to . No explanation from any Doctor . Of this disease. "at last there was researcher and the articles , I read everything. I asked if they had a support group, and was lead to the group on Facebook. It has helped more than words can say. I've never met one person with this disease".
The idea of raising money for Myelopathy is not a new one for me. At one point , some years ago I was going to do it myself but I had no idea where to funnel any proceeds to or how to explain the disease. Also, no one here is researching this disease or giving it much attention.
Meeting the team at myelopathy.org , has not just given me the opportunity to raise money for this worthy cause but It has also given me a sense of purpose. Margot has not just stopped at raising money for myelopathy she is now part of the support group as a very active moderator, "I love being part of the team at Myelopathy support. It's an honour, Anyone who is Ill, wants to feel useful, and I do to. I've met some smart, funny, wonderful people with positive attitudes. It can't help but to rub off on you.
We would like to thank Margot for her very kind proposition in helping us raise money by selling her wonderful art work, for more information regarding Margot's Art work please visit Miller Studios
In this Blog, we speak to Iwan Sadler about the start of the Facebook support group and what the future holds.
The Facebook group started back in early 2015 on the back of Iwan personal myelopathy awareness campaign. Iwan was diagnosed with Cervical Myelopathy at the end of 2014 and felt terribly alone with his diagnosis which was accompanied by very little information.
He started searching the Internet for information. Whatever facts he came across he shared on his Facebook awareness page called Spinal Myelopathy. Within a few months it began taking off and gathering Likes on a regular basis. He then decided to expand his awareness campaign through social media and before long a Twitter account was also gaining followers.
At first Iwan says he didn’t even think of developing a Facebook support group – it just happened on the back of the Facebook Community page. People started asking questions and engaging with each other on the awareness page posts. The main problem was it wasn’t the correct platform for people to discuss personal medical details about themselves.
This prompted Iwan to search for Cervical Myelopathy groups. There was an abundance of canine myelopathy groups but nothing really dedicated to Cervical Myelopathy. So, he launched the Facebook Myelopathy Support group with private settings creating a suitable platform for myelopathy sufferers to engage with each other and discuss their problems.
Iwan’s work coincided with the launch of the myelopathy.org website by Dr Mark Kotter and Dr Ben Davies. It was a bit of being in the right place at the right time. Iwan says he was oblivious of the launch of myelopathy.org until the day he received a message from Dr Ben Davies asking him if he would be happy to share his story Iwan's story on their new website.
At first Iwan felt reluctant. He says: “I didn’t want people to read it and think I had done it out of self-pity. That just wasn’t me. But I also knew this could also be a great opportunity to see the awareness campaign grow.”
After a few days of thinking, and a message from Ben saying that Iwan could put a link for his myelopathy awareness page in the My Story section on myelopathy.org, Iwan finally agreed. He says: “It was the perfect platform to launch the awareness campaign and to reach out to as many people as I possibly could.”
Iwan’s myelopathy awareness campaign really gained momentum and it also increased visitor numbers to the myelopathy.org website. At last people had the information and support they needed – a dedicated website for cervical myelopathy combined with a very active Facebook myelopathy support group.
Iwan was then invited to meet Mark and Ben but unfortunately had to decline the offer due to his worsening symptoms and inability to travel to Cambridge University. However, in 2016 just a few months after surgery, Iwan met up with Ben and Mark and other myelopathy sufferers at the University of Cambridge for the first CSM Day which was a great success.
He says: “It was great finally to meet likeminded people who had the same passion and determination for this important cause alongside other fellow sufferers. At last we had all found someone who would listen to us and answer some of our questions.”
Within a few months of their first meeting and a few discussions on Skype, it was decided to combine the two campaigns. “I think over the moon would be an understatement,” says Iwan. “It was a chance to turn my diagnosis into something positive not just for myself but for all the other sufferers out there.”
In 2016, the myelopathy.org Facebook community and the Spinal Myelopathy awareness campaign came together as Cervical Myelopathy for the launch of the support section at myelopathy.org and is overseen by Iwan. There are now more than 600 + members in the support group and over 1100 Likes on the community page. The numbers are going up daily. “The important factor is that people are now getting the help and support they need and also the information that they require at their fingertips. Hopefully they no longer feel alone like I did when I was first diagnosed,” says Iwan.
His myelopathy means Iwan is not able to sit in front of his laptop for long and some days he can’t do it at all. Fortunately, he now has help from the team of admins and moderators who all suffer from myelopathy and contribute as much as they physically can.
Iwan says: “Within the support group their work is paramount. I’m so grateful for the help they give. I really couldn’t do it without – Jillian, Shirley, Delphine and our newest recruit Margot. I thank you and I’m sure the other members would thank them too.”
There are bigger plans in the pipeline for our myelopathy campaign. For example, we have just launched out Cervical Myelopathy Community at HealthUnlocked and now we are also on Instagram we are forever looking at expanding through social media. We are also looking at providing an offline support group in the not too distant future. 2017 is an exciting time for our overall campaign with so many things in the pipeline ready for development so watch this space and don't forget to signup for our new newsletter coming out in the next following weeks
As part of the review from America, mentioned in our previous blog, the group looked at whether there were any screening questionnaires for Cervicogenic Headache.
They identified one such study. In this study, the researchers looked at the diagnostic criteria for Cervciogenic Headache, and compared how predictive of the condition each component was with respect to other forms of headache (such as Migraine).
Of the various features, the following were found to be associated with Cervicogenic Headache more than 75% of the time, compared to other headache conditions. (E.g. If 100 answer yes to statement 1, 75% will have a Cerviogenic Headache).
Major Symptoms and Signs
1) Pain triggered by neck movements and/or sustained awkward head positioning
2) Pain elicited by external pressure over the GON ( a nerve in the neck) or over C2-3 on the same side as the headache is experienced.
3) Shoulder and arm pain of a rather vague, non-radicular nature on the same side as the headache
4) Pain episodes of varying duration or fluctuating, continuous pain
5) Moderate, non-excruciating pain, usually of a non-throbbing nature
6) Anaesthetic blockades of the GON or C2 nerve root
7) Sustained neck trauma a relatively short time prior to the onset
Less commonly associated features
8) Rarely occurring nausea, vomiting, and XII photo- and phonophobia
9) Ipsilateral oedema and, less frequently, ̄ushing, mostly in the periocular area
11) `Blurred vision' in the eye ipsilateral to the pain
12) Difficulty on swallowing
The criteria are designed to be assessed by a doctor and not self reported by patients, but they may be of interest as we are aware that headaches are a common topic of conversation at Myelopathy Support.
It is worth mentioning that Cervicogenic Headache remains a controversial headache type and many of these symptoms can be experienced in other forms of headache.
(1) Mizer, A., Bachmann, A., Gibson, J., & Donaldson, M. B. (2017). Self-report and subjective history in the diagnosis of painful neck conditions: A systematic review of diagnostic accuracy studies. Musculoskeletal Science & Practice, 31, 30–44. http://doi.org/10.1016/j.msksp.2017.06.002
(2) Antonaci, F., Ghirmai, S., Bono, G., Sandrini, G., & Nappi, G. (2001). Cervicogenic headache: evaluation of the original diagnostic criteria. Cephalalgia : an International Journal of Headache, 21(5), 573–583. http://doi.org/10.1046/j.0333-1024.2001.00207.x
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