The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

I couldn’t help but laugh reading this as I am not sure what surgeon would ever do surgery based on a patient’s DIY radiology analysis!
No but it can wrongly convince a patient that they have CCI, based on nothing of value, and this patient will present this weak evidence to their doctor, and that will not be helpful at all, quite the contrary, it may make them appear irrational and turn their doctor against them. And I see nothing laughable here.
 
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No but it can wrongly convince a patient that they have CCI based on nothing of value, and this patient will present this weak evidence to their doctor, and that will not be helpful at all, quite the contrary, it may make them appear irrational and turn their doctor against them. And I see nothing laughable here.

These surgeons are made of tougher stuff
 
I also think presentations by neurosurgeons involved that go into detail about the anatomy carry a little more weight than secondhand offhand remarks by someone who may not even believe me/cfs is not psychosomatic.

I will delve into your responses more in detail in the next few days , hopefully.

Please do delve, and in particular just look at the three pictures you posted and I commented on. I think you can see that they are measuring the wrong thing. It is simple enough to see. They have got things back to front. Unfortunately radiologists and surgeons make mistakes like this.
 
This can, at a minimum, be associated with elevated intracranial pressure, as diagnosed via ICP bolt test. The idea is that this settling prevents the normal flow of blood and/or spinal fluid. (I don’t know if this is a literal obstruction or dysautonomia or if it can vary by case.) You measure their baseline intracranial pressure over 24 hours. You then put them in traction. You release them from traction. Repeat 10-20 times. This is one way to help test if there is a meaningful clinical/physiological effect of cranial settling.

Where did you get this from Jen? It sounds like complete nonsense to me. I suspect it has something to do with Chiari Malformation which is of no general relevance.
 
From Dr Bolognese:
Then you do manual cervical traction, with your hands, you pull the head of the patient (in a seated position) towards the ceiling, and if the patient loves you and wants to marry you, regardless of age or sexual orientation, then you hit the jackpot, and most likely you are dealing with vertical instability. Or major instability where all 3 [instabilities] are involved and equal.

Wow. I mean this is bizarre on so many different levels. I’m just imagining a doctor I know saying something like this and I just can’t.

I’m also wondering why if this method of doing traction is indicative of surgery, why is this method not being used in the UK despite there being 5000 fusion surgeries a year done here (Saw figure in another thread), and I’m sure many more worldwide. As far as I’m aware these patients aren’t being fused in traction positions, and they’re not becoming ill from being fused in the “normal position”, from what I understand? This is what is confusing me so much.
 
This is pretty much what happens. If this doesn’t happen, I don’t think you are offered surgery

But why not, Jen? Where is the evidence that a subjective response to traction predicts useful surgery? We need to be talking science - testing hypotheses, not clinical anecdote.

I cannot yet see any reason to link traction in people with no evidence of upward subluxation of the axis to an improvement of the state of the brain stem. In the picture debored13 showed traction made the situation worse, despite apparently making the measurement 'better'.
 
But why not, Jen? Where is the evidence that a subjective response to traction predicts useful surgery? We need to be talking science - testing hypotheses, not clinical anecdote.

I cannot yet see any reason to link traction in people with no evidence of upward subluxation of the axis to an improvement of the state of the brain stem. In the picture debored13 showed traction made the situation worse, despite apparently making the measurement 'better'.

It’s because during surgery, they do intraoperative traction before fixation. If you don’t have symptom relief from traction when you are conscious, then you are unlikely to have symptom relief after waking up from surgery, is the logic.

Re: publications, some of this has been described but for rigorous testing of this method, that hasn’t happened yet. I’m just telling you what happens and what patients report. I know that’s not remotely enough but it’s not nothing. There is a lot in the pipeline that is coming. I wish that was something I had any control over.
 
Please do delve, and in particular just look at the three pictures you posted and I commented on. I think you can see that they are measuring the wrong thing. It is simple enough to see. They have got things back to front. Unfortunately radiologists and surgeons make mistakes like this.
Will delve. Im afraid i have to let this rest for a couple days but will come back to it and hopefully find a way to print out the papers as looking at pictures that small on a mobile screen is paining me
 
Where did you get this from Jen? It sounds like complete nonsense to me. I suspect it has something to do with Chiari Malformation which is of no general relevance.

I had pretty dramatic ICP fluctuations, however this was related to my apnea (was the interpretation): https://link.medium.com/NQnApxNKL1

Other people have elevated pressure, I believe, for reasons that have to do with overt blockage of blood or CSF flow. Let me dig in a little bit re: some of the other reasons for this test in CCI patients.

With Chiari you would generally do a cine MRI and traction would not be involved. You’re right that that is a very different thing.
 
That's right. The CXA is mentioned with slight variation in terminology back for about thirty years. But over that time there appear to be about 26 articles where it appears in the title or abstract - which in medical literature terms is tiny. Most of the papers have nothing to do with management of CCI per se. Those that do are mostly from Henderson or some Japanese groups it seems.

I looked at neck images throughout my career and we did not use any special measurements other than the gap between anterior atlas and axis peg to indicate A-A instability. In most forms of CCI there are structural changes that are obvious just looking at the pictures. As far as I can see the focus on these measurements (CXA, BDI, Grabb Oakes) has come mostly in the context of EDS where the proposal is that CCI occurs with ligamentous laxity without bone deformity.

So these measurements may only be of interest in this narrow context. In most CCI situations you just take a picture and see the brainstem being pressed on. But Henderson and his colleagues are taking pictures where you see no compression and they want to be able judge the likelihood that compression (that they cannot see) occurs during movement. That is not unreasonable but they need to have some means of confirming that their measurements actually tell you that and as far as I can see they still have not done that.

It is also extremely difficult to get any idea from the literature how successful any of the surgery for CCI associated with EDS is. If the pictures do not show compression to start with then you cannot tell by showing less compression. Symptomatic improvement is very difficult to interpret following major surgery because the situation is unblinded and open to bias. What would be better would be evidence of improvement of physical signs. The problem is that almost nothing is said about physical signs in the studies I have looked at.

In other words there isn't any science here. If we criticise psychiatrists for poor science we have to apply the same standard to neurosurgeons who do not even attempt to control clinical their experiments.

Is this what you meant? Yes you are right that the consensus statement and these ligaments come out of an EDS context and are meant to describe situations where the bone is intact but the ligaments are lax.

Re: physical signs, I do know some people have changes in their neurological exams. Would that be interesting as part of a study? If an independent neurologists did a neurological exam pre/post?

Of course this is science. Science is a big tent and is not just the highest rigor of EBM. All this is a place to start. I really do appreciate you engaging and in particular, articulating what you’d want to see. That is actually what I would most like to talk about. What assumptions need to be tested? What measures need to be used? I want to know what would stand scrutiny and what is most important to do 1,2,3,4, but that requires digging in. Not just saying this is all BS, but taking it seriously and approaching it from the perspective of, “How do we find out?” I really appreciate this feedback and engagement with @debored13. It’s quite helpful.
 
A person that is involved in ME/CFS research at the NIH agreed that the evidence for craniocervical surgery being relevant to ME/CFS is very weak.

I mean there is zero evidence. But that doesn’t really mean anything at this stage.

And obviously, this surgery is relevant to CCI. The question is how many people who meet ME/CFS criteria have CCI? And if it is a significant number, how they hell did they get CCI?
 
It’s because during surgery, they do intraoperative traction before fixation. If you don’t have symptom relief from traction when you are conscious, then you are unlikely to have symptom relief after waking up from surgery, is the logic.

Where is the logic in that if we know that most symptoms are due to permanent neural tissue damage in CCI? Why deny surgery to people with damage who get no improvement on traction? It makes absolutely no sense in terms of what we know about the pathology from the past.

As faras I can see Henderson and colleagues have hypothesised that there is a syndrome due to intermittent compression on the brainstem that is different from what we have seen traditionally and not mediated by neuronal injury. I have not so far seen any evidence to indicate that this syndrome exists. The descriptions of the symptoms all look very soft to me.
 
Other people have elevated pressure, I believe, for reasons that have to do with overt blockage of blood or CSF flow.

Blockage of blood and CSF flow are completely unrelated issues involving totally different aspects of the anatomy. Blockage of CSF flow occurs with Chiari and downward herniation of cerebellar tonsils with compromise of flow through the ventricles but I don't think that is relevant to PWME having surgery.
 
Of course this is science. Science is a big tent and is not just the highest rigor of EBM. All this is a place to start. I really do appreciate you engaging and in particular, articulating what you’d want to see. That is actually what I would most like to talk about. What assumptions need to be tested? What measures need to be used? I want to know what would stand scrutiny and what is most important to do 1,2,3,4, but that requires digging in. Not just saying this is all BS, but taking it seriously and approaching it from the perspective of, “How do we find out?” I really appreciate this feedback and engagement with @debored13. It’s quite helpful.

The only science here is us picking all this apart, Jen. There has been no science from the neurosurgeons. This has nothing to do with 'rigour of EBM'. It is just making sure people aren't bullshitting the whole time - which in medicine is usual.

All the assumptions need to be tested. The validity of the measurements need to be tested. But you need to be aware that the claims made by these neurosurgeons don't even look at all credible to most of their colleagues and to me as someone with a lot of background knowledge of joint structure and clinical experience of CCI management it all looks extremely implausible. I only say it is all bullshit when people come back again and again with the same misunderstandings having taken no notice of what I have said over the months. My reasons for saying that are all in the threads and I am sorry I do not have the energy to dig them out.
 
Because there is no science proving any particular cause of ME/CFS.

The starting point of science is observation. We have that, multiple people who’s clearly defined ‘ME’ (a disease of unknown causation) has markedly improved via surgery. Many of us feel better with our heads pulled on. (And by the way, whether or not it is something that can be fully fixed surgically is actually also a secondary question to the larger question, understanding our pathophysiology).

The end point of a scientific investigation not having arrived yet can’t be used as a justification for not investigating or as a rebuttal for a hypothesis.
 
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