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

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.

 

Yeah fair enough I totally get that, it's just that the criticism feels rather constant and people seem to only engage with certain parts of what Jen/Deb/Hip have posted (although I see that JE is now replying to multiple points). But nevertheless I take your point. I didnt mean to sound mean, sorry.

 

Which bits of scientific evidence would you like addressed, @Sarah94? I have been 'replying to multiple points' in this way for months - maybe a year or more. I am not saying anything very new except some fine details raised by bebored13 of interest.

I don't see any scientific evidence here, just uncontrolled clinical observation, but if I have missed something I will address it.

 

I think it would be interesting to know why the 2013 'consensus' document has apparently disappeared from the internet. In more recent PubMed based publications Henderson has made it clear that the measurements are not validated indications for surgery. Perhaps he has realised that the 2013 statement was ill-advised and unhelpful.

 

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.

 

Is this a secondhand argument from authority? I'm not trying to be rude , but if we go that route-- of arguing based on someone's credentials--I recall that one of the lead investigators on the NIH study has made statements that me/cfs is psychosomatic--brian wallit

 

We seem to have been going that route for a while with invisible documents from Dr Henderson etc.

The main argument for CCI surgery seems to be an argument from authority:

Neurosurgeons must know what they are talking about.

But if that is true the scores of neurosurgeons who consider upright MRI to be of no value and the patients operated on by Dr Bolognese not to require surgery must surely know what they are talking about too.

 

It is useful to know that other doctors have similar concerns as Edwards. An important argument against CCI/AAI in ME/CFS is that there is a lack of published evidence.

 

To be fair, you acknowledged that the finer points in the literature i brought up recently were salient and I don't think those were arguments from authority.

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.

 

If you go on /r/medicine, most of the doctors there are unconvinced that me/cfs is not psychosomatic. If you talk to doctors in general, im fairly sure the vast majority would lean toward thinking me/cfs is psychosomatic. Going by what doctors say offhand does not seem like a good argument. They are not any less prone to error than many professions. And no, i dont assume neurosurgeons are any less full of it, which is why I look at the literature myself.

I had Lyme as my onset. Not "chronic Lyme" diagnosed by a private lab, just a standard open and shut Lyme case, with fever, bullseye rash and positive standard FDA tests, in an endemic area, treated by my PCP. I had lingering symptoms and eventually met the criteria for ME (i think there can be many different triggers).

My father, who is a fairly angry man, went into his doctor because hed been having episodic hypertension. I guess he opened up to his doctor about his challenges, like caregiving, and his doctor told him that the best thing for post lyme symptoms was vigorous exercise and that they were indistinguishable from depression. I was bedridden at this point and sensitive to noise and my father came home and started yelling at me about how i needed to start moving and get outside. All it took was a doctor, a primary care provider who knew nothing about the mechanisms of my illness, but had authority in my father's eyes, to get him to feel totally validated in forcing me to exercise. After a lot of argument my mom and sister talked him down. Nevertheless I don't really trust what doctors say offhand about any of these diseases.

 

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!

 

@debored13

There is a very general argument against sending ME/CFS to "special CCI/AAI doctors" and that is the lack of published evidence. I don't see prejudice or ignorance having anything to do with this.

 

My understanding is patients w/ cranial settling can often have very different measurements in traction v. out. The delta of their BDI (“dynamic BDI”) is quite high.

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.

Many patients have reported the sensation of their head literally draining in traction. I had someone describe this to me last week, someone who had found this out by total accident. She had traction, felt something drain from her head, found her symptoms had greatly improved for several hours and had no idea why.

 

I also don't see how a comment from an unnamed doctor at NIH on this carries any more weight than an undergraduate in music composition, or a plumber... But you certainly have the right to pass it along.

I would like NIH to speed up their study though

 

I mean, I think the Henderson diagrams indicate this pretty well (what happens in surgery).

During traction, the abnormal measurements are meant to reduce...CXA becomes less kyphotic.

 

This is pretty much what happens. If this doesn’t happen, I don’t think you are offered surgery

(We’ve heard stories in our group of people grinning, crying. It’s a clouds-parting moment. I know that sounds weird but see: sudden normalization of intracranial presure and/or relief of brainstem compression.)

It’s basically like that viral video of the young woman getting a cochlear implant and hearing for the first time. That’s what it feels like.

If it doesn’t feel that way, you don’t have surgery.

 

The modelling isn't just about whether the nerve tissue stretches, it is about how much stretching happens and whether it would cause damage. I need to go back to the paper but have to admit I'm a little tapped out now.

 

What do you mean by “there is no actual vertical instabilty.”

What gets worse with traction? The BDI?

 

How would you go about testing this?