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

These surgeons are made of tougher stuff

 

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.

 

Did you read my analysis of this in response to debored13? Did you not see that they have measured the wrong thing?

 

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.

 

another one
https://www.thedickinsonpress.com/l...gle-to-find-treatment-locally-for-severe-pain

 

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.

 

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.

 

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

 

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.

 

Sorry I must have missed it! Let me look.

 

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.

 

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?

 

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.

 

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.

 

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.

 

Do you actually mean this? That the fact that there is no evidence is not important? Because I'm having a hard time understanding that stance, on many levels.

 

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.