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

[JenB]

Im replying partially just to remind myself to reply later as I do not know how to bookmark a part of a thread.

This is an interesting discussion and i would like to fully understand the anatomy. Just woke up and a little tired though.

I would like to read those papers in full and also to ask Bolognese ans Henderson by email what their thoughts on this is.

Btw, wrt "cxa" , one justification in the study was not simply the case studies in which cxa was corrected and the patients improved. The other justification was based on some form of modelling (i dont quite understand whether it was a computer model or what) in which cxas under 150 started to be associated with some kind of sign or proxy of stretch injury. Also, that particular Henderson paper on the cxa cites a lot of literature. I'm aware that quantity is no substitute for quality and i haven't yet read those sfudies , but it does seem to suggest Henderson did not simply invent this measurement. Perhaps he revived a lesser used measurement because he thought it deserved more prominence. I would be interested in a clear history of measurements used in CCI. One of the studies, iirc, is from 2004

Pretty much every citation I could find on the CXA: https://www.me-pedia.org/wiki/Clivo-axial_angle There may, of course, be more.

1. ↑ Jump up to: 1.0 1.1 Consensus statement. 2nd International CSF Dynamics Symposium, 2013.
2. ↑ Jump up to: 2.0 2.1 2.2 Henderson, Fraser C.; Henderson, Fraser C.; Wilson, William A.; Mark, Alexander S.; Koby, Myles (Jan 1, 2018). "Utility of the clivo-axial angle in assessing brainstem deformity: pilot study and literature review". Neurosurgical Review. 41 (1): 149–163. doi:10.1007/s10143-017-0830-3. ISSN 1437-2320. PMC 5748419 
   
   . PMID 28258417.
3. ↑ Jump up to: 3.0 3.1 Batzdorf U, Henderson F, Rigamonti D (2016) Eds. Co-morbitidies that complicate the treatment and outcomes of chiari malformation. First edition ed. Chiari Syringomyelia Foundation Inc., Lulu
4. ↑ Jump up to: 4.0 4.1 4.2 4.3 Botelho, Ricardo Vieira; Ferreira, Edson Dener Zandonadi (Oct 2013). "Angular craniometry in craniocervical junction malformation". Neurosurgical Review. 36(4): 603–610; discussion 610. doi:10.1007/s10143-013-0471-0. ISSN 1437-2320. PMC 3910287 
   
   . PMID 23640096.
5. ↑ Jump up to: 5.0 5.1 5.2 Batista, Ulysses C.; Joaquim, Andrei F.; Fernandes, Yvens B.; Mathias, Roger N.; Ghizoni, Enrico; Tedeschi, Helder (Apr 2015). "Computed tomography evaluation of the normal craniocervical junction craniometry in 100 asymptomatic patients". Neurosurgical Focus. 38 (4): E5. doi:10.3171/2015.1.FOCUS14642. ISSN 1092-0684. PMID 25828499.
6. ↑ Jump up to: 6.0 6.1 6.2 6.3 Bundschuh, C; Modic, Mt; Kearney, F; Morris, R; Deal, C (Jul 1, 1988). "Rheumatoid arthritis of the cervical spine: surface-coil MR imaging". American Journal of Roentgenology. 151 (1): 181–187. doi:10.2214/ajr.151.1.181. ISSN 0361-803X.
7. ↑ Jump up to: 7.0 7.1 7.2 Şahan, Mehmet Hamdi; Asal, Neşe (Dec 1, 2018). "Is there a relationship between migraine disease and the skull base angles?". Ortadoğu Tıp Dergisi. 10 (4): 456–470. doi:10.21601/ortadogutipdergisi.411138.
8. ↑ Jump up to: 8.0 8.1 8.2 Nagashima, C.; Kubota, S. (1983). "Craniocervical abnormalities. Modern diagnosis and a comprehensive surgical approach". Neurosurgical Review. 6 (4): 187–197. ISSN 0344-5607. PMID 6674836.
9. Jump up ↑ Casey, A. T.; Smith, F.; Davagnanam, I.; Khan, F.; Prezerakos, G. K. (Mar 1, 2019). "FM1-7 Cranio-cervical instability in ehlers-danlos syndrome employing upright, dynamic MR imaging; a comparative study". Journal of Neurology, Neurosurgery & Psychiatry. 90 (3): e22–e22. doi:10.1136/jnnp-2019-ABN.69. ISSN 0022-3050.

 

[Hip]

I googled CXA and nearly all the mentions are in papers by Henderson,

Here is a screenshot of a Henderson 2018 video which shows the 17 institutions that participated in the 2013 meeting which lead to the consensus statement (a statement which agreed that the CXA, Grabb-Oakes, BAI and translational BAI were the crucial measurements for detecting craniocervical instability):



Looks to be a wide group at the colloquium; whether that wide group was involved in setting the consensus statement, I don't know. Dr Bolognese in one of his videos mentions a friend of his in Japan was involved in figuring out which measurements are best used to detect CCI.

The consensus statement is published in this book (unfortunately not available on SciHub).

A copy of the consensus statement provided in this post.



Some of the Henderson presentations detail research about neuronal stretching. In this 2014 video at 10:42 Dr Henderson explains if you stretch a mouse optic nerve just 20% of its length, you see axon retraction balls, and then later you get apoptosis.

Thus if neurons are susceptible to destruction by just a 20% stretch, this may explain why a too acute clivo-axial angle causes problems. When the angle is very acute, the brainstem and spine become stretched on one side, and compressed on the other.

 

[Hip]

EDIT: the fact that even Bolognese has warned to avoid 'amateur hour' on Facebook suggests that things have moved too fast and with too little caution.

The amateur attempts at diagnosis are just for personal interest only, and also useful for learning a bit more about CCI. Often people will get their MRI imaging, send it away for professional analysis, and while they are waiting for the results, may indulge in amateur speculation about what their measurements might be. But nobody would dream of going into surgery on the basis of their own amateur measurement attempts. Thus there is no harm in doing this, as long as you understand (as we all do) that you have to defer to the experts.

 

[Saz94]

Still nobody has substantively engaged with any of the science posted by Jen and Debored and Hip...... Come on guys. You can't complain about lack of science and then ignore when you are shown the science.

 

[Hip]

Can the persons who think this consensus is important point out where it can be found and who the exact authors were?

And official guidelines refering to this consensus...

See my post just above for info about the consensus statement.

 

[Hip]

I wouldn't expect traction over a day or two to alter symptoms or signs due to CCI much if at all

Dr B in one of his presentations says that cervical traction is a dress rehearsal for fusion surgery. I believe will not offer surgery to patients whose symptoms do not immediately improve under cervical traction, because he says if traction does not help, neither will surgery.

Furthermore, it may be only specific symptoms out of the patient's cluster of cervical medullary syndrome symptoms which improve under traction. If those symptoms happen to be the ones that the patient has the most trouble with, then that's good, and surgery may be worthwhile.

But if Dr B finds that the symptoms which most concern the patient most do not improve under traction, then he informs the patient than these symptoms will not improve via fusion surgery either. In which case, the patient may decide against surgery, because the traction test has indicated that their worst symptoms will not be improved by fusion surgery.

Thus neck traction seems to be a powerful tool in figuring out which patients with CCI might benefit from surgery. I heard it on the grapevine that Dr G has recently adopted this traction test too.

 

[Guest 2176]

Still nobody has substantively engaged with any of the science posted by Jen and Debored and Hip...... Come on guys. You can't complain about lack of science and then ignore when you are shown the science.

I think that Jonathans reply to me was substantive and interesting, even though I do not share many of his viewpoints! Its true that people seem to be more drawn to the more emotive discussions than the very technical ones, leaving a void here, but to be fair, ME brainfog is very real

 

[Guest 2176]

Btw, wrt "cxa" , one justification in the study was not simply the case studies in which cxa was corrected and the patients improved. The other justification was based on some form of modelling (i dont quite understand whether it was a computer model or what) in which cxas under 150 started to be associated with some kind of sign or proxy of stretch injury

Can anyone make sense of that part of the Henderson paper btw? It is not that complex but ive spent all day online and am pretty crashed. Would love a tldr, it seems like an important piece of the puzzle

 

[Saz94]

I think that Jonathans reply to me was substantive and interesting, even though I do not share many of his viewpoints! Its true that people seem to be more drawn to the more emotive discussions than the very technical ones, leaving a void here, but to be fair, ME brainfog is very real

I must have missed that one amongst all the other posts.

 

[Hip]

At timecode 59:00 of this 2018 video, Dr B talks about traction (pulling the head up), axial loading (pushing the head down), and cervical collars (which immobilize the head). Here are some quotes from Dr B:

Axial loading is where you push the head down, and if somebody has vertical instability, they are going to hate it" [because the patient's symptoms will instantly become worse].

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.

Dr B says in the 2018 video at 1:00:55:

But the cervical collar does not lift you head up. It just immobilizes the neck in the horizontal position. So if your instability is mostly horizontal, that's pretty good. But if you have more vertical [instability], the cervical collar is not going to do much. So you could have some false negative.

I actually know one ME/CFS patient with CCI who has mostly horizontal instability, and just by wearing a cervical collar for a few hours each day, she moved from severe to mild ME/CFS. That's a huge improvement, and no surgery was required. Of course this cervical collar treatment is only applicable to those whose instability is primary horizontal.

 

[Guest 2176]

But @Hip i thought traction could also cotrect a kyphotic cxa, which is caused by horixontal , not vertical instability? Anyway, my main problems measurement wise are kyphotic cxa and translational bai thats pathological, which i thought indicates horizontal rather than vertical instability, but i have a strong response to traction

 

[Hip]

But @Hip i thought traction could also cotrect a kyphotic cxa, which is caused by horixontal , not vertical instability?

Yes, we had some debate about this, the excerpt from that video suggests that it's only vertical instability which symptomatically improves via cervical traction, but Jeff says that all forms of instability will improve by traction, and I think this may be correct.

 

[Jonathan Edwards]

Still nobody has substantively engaged with any of the science posted by Jen and Debored and Hip...... Come on guys. You can't complain about lack of science and then ignore when you are shown the science.

Sorry, @Sarah94, but I have repeatedly pointed out in detail why there is no science here. Science is not just hypothesis and data. It is the testing of hypothesis in a controlled fashion to see if it stands up. The more we look at the data we have been presented with the more it looks to mean nothing. The more we are told about the hypothesis the more we hear contradictory statements.

What bit of science has not been addressed?

 

[Saz94]

What bit of science has not been addressed?

All those citations that Jen, Debored and Hip posted

 

[Jonathan Edwards]

Dr B in one of his presentations says that cervical traction is a dress rehearsal for fusion surgery. I believe will not offer surgery to patients whose symptoms do not immediately improve under cervical traction, because he says if traction does not help, neither will surgery.

And as far as we know he has no evidence for that claim. How would he have got evidence for the claim? Please remember that doctors often think they can intuit what is going to work without actually testing it.

 

[Jonathan Edwards]

All those citations that Jen, Debored and Hip posted

None of which test any hypothesis about the relevance of CCI to ME/CFS patients or indeed the relevance of measurements to the value of CCI surgery. Citations are not science. They may use the language of science but that is a different matter.

You have to tell me what piece of scientific evidence that tests an idea we haven't addressed.I have been going on about the problems with the measurements and the assessments for months.

 

[Jonathan Edwards]

anyone make sense of that part of the Henderson paper btw?

You don't actually need to do any modelling fo r ti to be obvious that a high CXA angle would be associated with stretching of brainstem - it is obvious it would. The question is whether it is actually of importance in the patients being operated on. From what I have seen of how much you need to compress or stretch nerve tissue to get damage I doubt it. As Henderson himself has recently pointed out the relevance of the CXA remains speculative.

 

[Jonathan Edwards]

Yes, we had some debate about this, the excerpt from that video suggests that it's only vertical instability which symptomatically improves via cervical traction, but Jeff says that all forms of instability will improve by traction, and I think this may be correct.

The paper debored13 posted indicates what they think happens. Traction is intended to improve vertical instability of a 'functional' sort - i.e where there is no actual vertical instability but it looks like it from the way the numbers change. As I pointed out the numbers seem to be measuring the wrong thing and the situation actually gets worse with traction rather than better.

 

[Jonathan Edwards]

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.

To me this sounds like the classic bullshit of the cowboy practitioner who claims he can diagnose from special 'clinical tests'. He is either unaware of, or conveniently forgets, the psychology of this sort of situation. And where is the evidence that it actually means what he thinks it means?

 

[Trish]

Still nobody has substantively engaged with any of the science posted by Jen and Debored and Hip...... Come on guys. You can't complain about lack of science and then ignore when you are shown the science.

Patience Sarah, some of us would love to read and try to understand it all and respond with questions etc, but I for one can't keep up with so much at once.