• Phoenix Rising needs funds to operate: please consider donating to support PR

Tethered cord syndrome

JenB

Senior Member
Messages
254
Likes
1,813
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
 
Last edited:
Messages
9
Likes
14
This adds another piece to my puzzle that seems to fit. I wet the bed as a child until age 12 and was a poor runner. It was very uncomfortable, painful and awkward for me even though other children could do so with ease.
I have a question regarding the sacral dimple. I did the "butt check" and I seem to have darker pigmentation above the crack and what I saw wasn't a dimple but a faint vertical indented line that starts from right below the crack and goes up. I looked and images online to compare but most are of more extreme cases.
I have CFS/ME, MCAS and POTS and show many signs of CCI/AAI, etc. I've had MRI imaging done and my neuro was supposed to send images off to Dr. B. Then COVID happened and things got lost in the shuffle and I just found out that he forgot to send them. So, I don't know how long it will take to have them reviewed. Reading your new findings makes me even more curious if this could be me.....
One thing I thought might be interesting. I carry two copies of MTHFR. One is the C677T and A1298C. I read somewhere that having the C677T can increase your risk of neural tubal defect by 2-4 fold. I know the MTHFR mutation can be common however, my be another layer to the cake.
 

JenB

Senior Member
Messages
254
Likes
1,813
This adds another piece to my puzzle that seems to fit. I wet the bed as a child until age 12 and was a poor runner. It was very uncomfortable, painful and awkward for me even though other children could do so with ease.
I have a question regarding the sacral dimple. I did the "butt check" and I seem to have darker pigmentation above the crack and what I saw wasn't a dimple but a faint vertical indented line that starts from right below the crack and goes up. I looked and images online to compare but most are of more extreme cases.
I have CFS/ME, MCAS and POTS and show many signs of CCI/AAI, etc. I've had MRI imaging done and my neuro was supposed to send images off to Dr. B. Then COVID happened and things got lost in the shuffle and I just found out that he forgot to send them. So, I don't know how long it will take to have them reviewed. Reading your new findings makes me even more curious if this could be me.....
One thing I thought might be interesting. I carry two copies of MTHFR. One is the C677T and A1298C. I read somewhere that having the C677T can increase your risk of neural tubal defect by 2-4 fold. I know the MTHFR mutation can be common however, my be another layer to the cake.
I’m glad this connects. My sacral dimple is in my butt crack. I’ve always felt it but didn’t know it was abnormal!

Dr. B focuses more on CCI/AAI, but also diagnoses tethered cord. For a tethered cord first (or second) opinion, Petra Klinge is the top expert.
 

Hip

Senior Member
Messages
14,360
Likes
28,005
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.
Very interesting.



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.
Fascinating! I just did the derrière examination, and it appears I also have a sacral dimple. You learn something every day!

Maybe you are onto something here. Might be worth running a poll on PR, to see how many have a sacral dimple.
 

sb4

Senior Member
Messages
1,338
Likes
2,155
Location
United Kingdom
Not sure how relevant this is but when I was doing kickboxing before being ill we used to do sit ups on the wooden floor and my lower back around the top of my ass crack would start to bleed from the friction of the floor and the sacrium (?) of my spine.
My feet would occasionally bleed from friction of the floor also. This didn't happen to anyone else. I assume the latter is from some poor conective tissue and possibly the former also. Would the sit ups thing be related to this sacral dimple thing. I am not sure that I have one.
 

Hip

Senior Member
Messages
14,360
Likes
28,005
I am not sure that I have one.
They are hard to see, I could not even see mine in the mirror, but by setting up a webcam, I was able to see it. No, I am not going to upload the pictures!
 
Messages
4,604
Likes
10,787
Not here.

Instead I have a series of spinal issues that at least don't seem to include this. The lordosis is evident at 3 years old. The rest- took longer to show up.
 

Hip

Senior Member
Messages
14,360
Likes
28,005
In infants, a sacral dimple indicates a possible tethered cord. This is where the spinal cord gets stuck on to a structure within the spine, meaning that the cord cannot move freely.

Tethered cord symptoms in adults include: back pain that radiates to the legs, hips, and the genital or rectal areas. The legs may feel numb or weak, and may lose muscle. Bladder and bowel control may be difficult.

This article says:
In most cases, sacral dimples are simply signs of minor abnormalities as the baby grows inside the womb. In rare cases, they can indicate a deeper spinal abnormality.

They can also be present in later life and not cause problems.

A sacral dimple can also indicate an underlying problem known as tethered cord syndrome.


It's not just sacral dimples that can indicate tethered cord, but also other lesions on the skin of the lower back, including hairy patches, and soft, fatty lumps that grow under your skin (subcutaneous lipomas). This paper says that in infants:
Cutaneous lesions of the lower back region could be associated with tethered cord syndrome including hairy patches, subcutaneous lipomas, and dimples.
 

maple

Senior Member
Messages
163
Likes
332
When I have a flare-up it feels like my head is jammed onto my spine too tight. Like an apple jammed onto a pencil. My whole spine feels swollen and my lower back hurts more than normal. Also my right side muscles shorten so that my spine curves in a c-shape. I can’t fix this without extra rest, massage and physiotherapy including cranio-sacral therapy. Is this consistent with tethered cord?
 

maple

Senior Member
Messages
163
Likes
332
And of course my neck is wonky, sometimes sore, sometimes jamming, always grinding. Blah blah
 

sb4

Senior Member
Messages
1,338
Likes
2,155
Location
United Kingdom
I ended up just using a mirror though it does appear I have a dimple midway down my crack. I wonder how common this is though as it takes some effort to see this and I doubt many people are looking for it.
 

JenB

Senior Member
Messages
254
Likes
1,813

JenB

Senior Member
Messages
254
Likes
1,813
I ended up just using a mirror though it does appear I have a dimple midway down my crack. I wonder how common this is though as it takes some effort to see this and I doubt many people are looking for it.
Google says 3-8% of the population

On Facebook, I polled the two neurosurgical groups I admin. numbers were ~40-48%.

Twitter below (although here, people had less guidance on what a sacral dimple was. On FB, everyone was posting photos of their butts!)

09AFFD61-606C-4DFE-A79A-6FD056296C99.jpeg