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Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

bread.

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if you have horizontal instability and your vertebrae are sliding, everytime your head gets in extension or flexion or a combination with rotation your spinal canal will be in a unphysiological position, it is both, a stretching and a compression but different from a compression that is caused by vertical instability.

lets say you sit upright and then bend your head forward, your face parallel to the floor, gravity will pull on your head, the healthy cervical spine usually withstands this because its vertebrea are tightly in position, in case they are not it is not difficult to imagine how this could affect your nerve tissue in the spinal canal.
 

mattie

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cannot remember which of his talks it was, but I recall Henderson saying in an anonymous survey, about half of patients said they felt they had made remarkable recovery, 25% said they were better to a lesser degree and 25% felt they were worse off or no improvement. He indicated some of those might have had other unresolved issues.
These are all EDS patients. Henderson is following them all long term.
 
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my whole „theory“ stands on the idea that people will have greater results post surgery if there is brainstem compression which seems somewhat more likely in more pronounced vertical instability, this seems to be a different kind of injury to the nerve tissue than a stretch injury, which seems more likely (or solely happening?) in horizontal instability.

If you look at classic spinal cord accidents it is mostly a stretch injury (or tear in worst case) which results in mostly irreversible (?) damage- also due to the massive inflammatory cascade which ensues thereafter. So maybe that is similar?
Ok, now I think, I got you. And indeed, its reasonable to me, that stretching could be much more likely irreversible than compressing. If I recognize rightly, @JenB was diagnosed by dynamic BDI and thereby with vertical instability. So, that would make sense. But I remember @jeff_w mentioned, that he had a retroflexed odontoid, what would be considered as horizontal instability, as far as in understand.

What I'm wondering about as well is the following. Grabb Oakes seems more sensitive to horizontal instability. (https://me-pedia.org/wiki/Craniocervical_instability#Measurements ) And that makes a lot of sense. Grabb Oakes is for example pathological, if odontoid dip into brainstem/ spinal cord (sorry, no idea where the one ends exactly and the other begins). That would make CXA pathological in many cases, as well. But, what I'm trying to say, considering Henderson, Grabb Oakes implies brainstem compression. (https://www.omicsonline.org/open-ac...ty-connective-disorders-2165-7939-1000299.pdf page 2) So, in that case a horizontal instability would lead to brainstem compression, if I gout everythin right.

Everybody has to understand that I am a baker, not a doctor or scientist, I constructed this „theory“ from a very limited data set and years of reading personal anectodal accounts of patients. I basically have no idea what I am talking about and looking back reading posts here while getting sicker and sicker with trying things I wish that I have known that nobody else does either.

Matties description of his improvement fits the available data more than the „miracle“ patients, I have zero doubt that they are real but we have to understand why they got so much better before assuming that everyone (or even the biggest part of patients) will have these incredible results!
I've got a Ph. D.* and I'm not any smarter than you. It doesn't matter what you are. (Anyway, baker is a great profession, In my opinion.) We're all here for the same reason, helping each other. And your critical way of thinking is very helpful. I think, everyone here appreciate this.

* In engineering, what most people would not consider as science. :)
 

Hip

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I do not know much about horizontal instability and how it can cause pathology.
My understanding is that horizontal instability is where the skull does not properly pivot on the top of the spine, but slides horizontally over the spine as the head moves from flexion to neutral to extension.

In normal heathy people, the pivoting is very precise, and so there is very little horizontal movement (less than 1 mm in translational BAI). Pathology starts when the translational BAI is greater than 2 mm, and I believe Dr H considers those with a translational BAI of greater 4 mm candidates for surgery.

So I guess this horizontal movement will unduly stretch the brainstem and spinal cord. But I have not been able to find any info on the precise mechanism of damage.
 
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My understanding is that horizontal instability is where the skull does not properly pivot on the top of the spine, but slides horizontally over the spine as the head moves from flexion to neutral to extension.

In normal heathy people, the pivoting is very precise, and so there is very little horizontal movement (less than 1 mm in translational BAI). Pathology starts when the translational BAI is greater than 2 mm, and I believe Dr H considers those with a translational BAI of greater 4 mm candidates for surgery.

So I guess this horizontal movement will unduly stretch the brainstem and spinal cord. But I have not been able to find any info on the precise mechanism of damage.
So, if someone suffers only from horizontal instability and the head is kept immobilized all the time (eg. via neckbrace) this should eliminate all symptoms?

If the problem is vertical instability on the other hand, a neck brace alone might not work, because the entire skull needs to be forcefully pulled upward.

So by this logic if neither neck traction or neck bracing helps, then there is no instability?
 

bread.

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So, if someone suffers only from horizontal instability and the head is kept immobilized all the time (eg. via neckbrace) this should eliminate all symptoms?

If the problem is vertical instability on the other hand, a neck brace alone might not work, because the entire skull needs to be forcefully pulled upward.

So by this logic if neither neck traction or neck bracing helps, then there is no instability?
or lasting damage ...
 
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I understand now, that translational BAI is the best marker for movement of the skull. That itself doesnt necessary lead to any harm. But, if Grabb Oakes/ CXA are patholgical as well (thats actually the case for me: https://forums.phoenixrising.me/thr...treatment-outcomes.62720/page-14#post-2222113 ), it would be likely irreversible harmful. So, if you're right, @bread., I should avoid every movement. (I am doing medical gymnastics for strengthening of inner muscles at the moment.)

Thank you all for this insight! I have definitely to think about.
 

Malea

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Has anyone of you already understood what is happening exactly in vertical instability?

I‘m totally confused what exactly/ at which place something is moving downward there.
Because the skull sits on c1... so it can‘t just go down, right? So is it c1 that is going down, together with the skull on top?
So so confusing.
 

Hip

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So, if someone suffers only from horizontal instability and the head is kept immobilized all the time (eg. via neckbrace) this should eliminate all symptoms?
Yes, if they only have horizontal instability, then a cervical collar may help. But you often have more than one type of instability: you can have horizontal, vertical and rotational instability.

@jeff_w reckons that neck traction will work for all types of instability.
 

jeff_w

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I understand now, that translational BAI is the best marker for movement of the skull. That itself doesnt necessary lead to any harm. But, if Grabb Oakes/ CXA are patholgical as well (thats actually the case for me: https://forums.phoenixrising.me/thr...treatment-outcomes.62720/page-14#post-2222113 ), it would be likely irreversible harmful.
I still do not quite follow the basis for the above assumption. Why assume that horizontal instability would likely lead to irreversible harm?

Whether the instability is horizontal or vertical, the brainstem tissue is being mechanically distorted.

I had classic horizontal instability. It was apparent on my upright flexion-extension MRI.

In flexion:
  • My Grabb-Oakes was pathological: 9mm.
  • My clivo-axial angle (CXA) was pathological: 134 degrees.
The above measurements of horizontal instability were taken when I was very ill but before I became fully bedbound. It's possible they became worse than this as my symptoms progressed.

In addition to horizontal instability, I had vertical and rotational instability. My craniocervical junction was unstable in 3 distinct, measurable directions. My brainstem was being vertically compressed, rotationally strained, as well as horizontally stretched. None of it led to permanent damage.
 

jeff_w

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Hi @borko2100 ,

Case A is below:
Case B is below:



Now it should become obvious why traction helps with those cases. In case a: when the head is pulled upward, the dens is pulled away from the foramen magnum thus eliminating the compresion. In case b: the traction causes the curvature of the spinal cord to be normalized and thus removes the pathological stretching.
Your description of why traction would work is really helpful, thanks for posting this.

Just so we're clear: Your "Case A" is an example of vertical instability. Your "Case B" is an example of horizontal instability.

So if the diagnosis is case A or B, the probability of success from fusion surgery is very high.

If on the other hand the problem is horizontal instability then the picture isnt as clear.
No, that's not quite correct. Your "Case B" is actually a very clear photo of horizontal instability. Your description is of how horizontal instability works is accurate.

If someone knows more about how horizontal instability actually causes compression or stretching please let me know.
You described horizontal instability yourself, in your "Case B." That angle of 120 degrees is the clivoaxial angle (CXA). You described yourself how this horizontal instability stretches the spinal cord. You also described how this would be correctable with surgery.

I had both Case A (vertical) and Case B (horizontal) instability. My fusion fully corrected both problems, exactly as you described it would. The horizontal instability caused no permanent damage.
 
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Hip

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I wonder if there is a difference between horizontal instability as measured by a pathological CXA and/or Grabb-Oakes, and horizontal instability as measured by a pathological translational BAI?

I wonder if the former might be a static and constant horizontal instability, which puts constant pressure the brainstem and spinal cord all the time; whereas perhaps the latter only applies transient pressure or strain when the head is in flexion or extension.

If so, then the CXA or Grabb-Oakes horizontal instability might be a worse thing to have than the translational BAI horizontal instability.
 
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I still do not quite follow the basis for the above assumption. Why assume that horizontal instability would likely lead to irreversible harm?[...]
Not horizontal instability at all, just a special (dynamic?) kind of it. Its highly speculative, but worthwile to discuss.

[...]I had classic horizontal instability. It was apparent on my upright flexion-extension MRI.

In flexion:
  • My Grabb-Oakes was pathological: 9mm.
  • My clivo-axial angle (CXA) was pathological: 134 degrees.
[...]
Thank you, @jeff_w. Your measurements are close to mine. (Grabb 9.9, CXA 130) I would consider myself as between mild an moderate. May I ask what your translational BAI was?
 

jeff_w

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Not horizontal instability at all, just a special (dynamic?) kind of it. Its highly speculative, but worthwile to discuss.
My only concern is that people will take away from this discussion that "horizontal instability = permanent damage." It seems to be such a baseless overreach.

But perhaps people do fully understand the highly speculative, non-evidenced nature of that idea. If that's the case, then my concerns about this line of discussion are unwarranted.

Thank you, @jeff_w. Your measurements are close to mine. (Grabb 9.9, CXA 130) I would consider myself as between mild an moderate. May I ask what your translational BAI was?
My translational BAI was 6mm.
 
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My only concern is that people will take away from this discussion that "horizontal instability = permanent damage." It seems to be such an overreach.

But perhaps people do fully understand the highly speculative, non-evidenced nature of that idea. If that's the case, then my concerns about this line of discussion are unwarranted.

My translational BAI was 6mm.
Considering your surgery outcome, your translational BAI actually proves the opposite or at least falsifies the thesis, in my opinion.
 
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@jeff_w Everything you did and still do is so important for all of us. But theres so much left to discover and many of us are still at the beginning of the process, struggling with the rare information we face.

And at least the hint from @bread. re: brainstem stretching and the link to injury sufferers is very reasonable, I think. Its just not reducible to horizontal instability, esp. not like i did in my conclusion. Thats quite clear now, considering your specific measurements. Anyway, I appreciated the discussion and I‘m happy about what I’ve learned from it.
 

bread.

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Agreed.

We have a clear counterexample.
Agreed.

We have a clear counterexample.

I am sorry, but again, I do not think that is correct:

Exactly because you had instabilitys in all dimensions it is impossible for you to say what kind of gained stability improved your situation.

The fact that you improved with vertical traction and not by wearing a collar just stands testament that the removal of „vertical pressure“ is what changed your outcome the most.

Of course vertical traction also improves horizontal instability but so would lying down or wearing a collar, so why is not changing the symptoms to the degree like traction?

You understand the point?

Let me ask you a very simple question in that regard:

Why is Dr. B not taking patients that do not respond to vertical traction even if they have instabilitys?