Hi guys,
I just wanted to bring your attention to some of what I’ve been sharing on tethered cord and tethered cord syndrome on Twitter. (I’ll probably consolidate this into a Medium post sometime soon).
The long and the short of it is that I am starting to realize tethered cord might be in many respects more important than craniocervical instability. At least, it seems to be fundamental. Jeff and I have both focused a lot on craniocervical instability, because that’s what caused the lion’s share of our ME symptoms . However, I can’t help but wonder if tethered cord, which I was most definitely born with, was my greatest risk factor for developing ME later in life.
The possible relationship between tethered cord and craniocervical instability is quite simple. The tension on your cord as you grow exerts a downward force on the brainstem. It also forces a hunched over, head forward posture (with kyphosis of the thoracic spine). This makes the craniocervical junction much more vulnerable to damage. The virus or physical trauma might then be the straw that breaks your neck. Or in other people, it might be gradual, almost inevitable.
Also, in both of the Facebook groups I manage for people with ME pursuing these diagnoses, I did polls to see how many people have sacral dimples, a sign of possible tethered cord. We’re at roughly 40-48% in each group. That’s very high, if the figure I found for the general population—3-8%—is correct.
We are also finding it *very common* that people with ME who have fusions experience an initial improvement, but then have a worsening of symptoms 4-5 months later, as their tethered cord syndrome symptoms ramp up. I suspect this might happen because the fusion adds traction to the cervical spine and improves the posture that the pwme developed to adapt to the tethered cord. Why at the 4-5 month mark? I’m not sure, but that’s often when people start feeling a little better from the first three months of recovery hell, and thus start being up and about more. Jeff and Julie both had this experience, as have several other individuals who are not public. (I did not—I had my fusion and tethered cord release one week apart, so recovered from both surgeries together.)
Lastly, at least one person (on the younger side, a teenager) had her tethered cord release surgery before her fusion and her PEM is gone. She isn’t 100% but she and her parents are now going to hold off on her having a fusion as she may not ultimately need it.
Petra Klinge’s talk on occult tethered cord, which does not appear on imaging:
On some of the symptoms people who had tethered cord as kids report:
On high rates of tethered cord in our groups:
On the possible relationship between tethered cord and PEM: https://medium.com/@jenbrea/pathology-part-ii-could-pem-be-a-symptom-of-neural-strain-f5be69175e1
MEpedia page on tethered cord syndrome, with list of symptoms: https://www.me-pedia.org/wiki/Tethered_cord_syndrome
I just wanted to bring your attention to some of what I’ve been sharing on tethered cord and tethered cord syndrome on Twitter. (I’ll probably consolidate this into a Medium post sometime soon).
The long and the short of it is that I am starting to realize tethered cord might be in many respects more important than craniocervical instability. At least, it seems to be fundamental. Jeff and I have both focused a lot on craniocervical instability, because that’s what caused the lion’s share of our ME symptoms . However, I can’t help but wonder if tethered cord, which I was most definitely born with, was my greatest risk factor for developing ME later in life.
The possible relationship between tethered cord and craniocervical instability is quite simple. The tension on your cord as you grow exerts a downward force on the brainstem. It also forces a hunched over, head forward posture (with kyphosis of the thoracic spine). This makes the craniocervical junction much more vulnerable to damage. The virus or physical trauma might then be the straw that breaks your neck. Or in other people, it might be gradual, almost inevitable.
Also, in both of the Facebook groups I manage for people with ME pursuing these diagnoses, I did polls to see how many people have sacral dimples, a sign of possible tethered cord. We’re at roughly 40-48% in each group. That’s very high, if the figure I found for the general population—3-8%—is correct.
We are also finding it *very common* that people with ME who have fusions experience an initial improvement, but then have a worsening of symptoms 4-5 months later, as their tethered cord syndrome symptoms ramp up. I suspect this might happen because the fusion adds traction to the cervical spine and improves the posture that the pwme developed to adapt to the tethered cord. Why at the 4-5 month mark? I’m not sure, but that’s often when people start feeling a little better from the first three months of recovery hell, and thus start being up and about more. Jeff and Julie both had this experience, as have several other individuals who are not public. (I did not—I had my fusion and tethered cord release one week apart, so recovered from both surgeries together.)
Lastly, at least one person (on the younger side, a teenager) had her tethered cord release surgery before her fusion and her PEM is gone. She isn’t 100% but she and her parents are now going to hold off on her having a fusion as she may not ultimately need it.
Petra Klinge’s talk on occult tethered cord, which does not appear on imaging:
On some of the symptoms people who had tethered cord as kids report:
On high rates of tethered cord in our groups:
On the possible relationship between tethered cord and PEM: https://medium.com/@jenbrea/pathology-part-ii-could-pem-be-a-symptom-of-neural-strain-f5be69175e1
MEpedia page on tethered cord syndrome, with list of symptoms: https://www.me-pedia.org/wiki/Tethered_cord_syndrome
Last edited:
