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

I suspect that intraoperative traction is black magic. I do not see how you can pull the bones apart without leaving gaps that would put all the weight on the fixation screws. If C1 is not fixed I am not sure what operation is being done. However you fix, you have to fix C1 I would have thought.

 

I obviously have no idea either. I wish I could share a picture of someone who had the surgery. Maybe at some point. From my layman's eyes it does however look like he skips C1.

Did you see the slides of this presentation by Peul? The last ones are in English. Sadly no real mention of the technique he uses.

https://www.zonmw.nl/fileadmin/zonm...sessie_Leiden/Wilco_Peul_CCH.EDS.ME_klein.pdf

I did find this article but I'm not sure if this is related.

https://journals.sagepub.com/doi/full/10.1177/2192568219877878

 

@Jonathan Edwards what is the difference between Dexamethasone and Dexmedetomidine. The latter is most often mentioned in the review paper by Gilet et al but Dexamethasone only once. However in figure 2. I don't see Dexamethasone mentioned even though it was referred to as being in figure 2. So are they the same thing?

I'm wondering as Dexamethasone reduces inflammation in Covid-19. Probably even neuroinflammation that could explain some of the improvements seen in ME patients that are having surgery as well?

We see quite a few patients being upright, standing, walking rather quickly after the surgeries performed by Gilete, and crashing after a whlle. Yet with Peul this didn't happen. As far as I'm aware Peul didn't use it.

Sorry, I hope my message makes sense...

 

Yes, it means the procedure is to fix C2 to occiput rather than put screws into C1. So C1 is not fixated technically but it is completely immobilised between the two. That makes sense but it means that you have neither occipital-atlantal nodding function nor Atlanta-axial rotation. That makes you pretty stiff.

With that comprehensive immobilisation you could not really explain poor recovery on inadequate technique. In other words there is no point in complaining about not fixating C1 if it is going to be completely immobilised between two other bones anyway.

I suspect the crucial thing for these procedures is the angle of flexion in which immobilisation occurs. Nobody seems to talk about that. It often looked to be bad in my patients after surgery.

 

It is difficult to be sure what Peul is saying to his slides but I think he is saying that Henderson's theories and measurements look like guesswork "maximal uncertainty". Peul looks as if he is a standard neurosurgeon practicing the current mainstream technique for seriously unstable spines as in RA etc.. I cannot see how that technique could be considered inadequate because it is comprehensive. I think he is saying that he doesn't believe the London MRI reports or the rationale for surgery for ME/CFS.

 

I had never heard of dexmedetomidine but it seems to be a sedative a bit like valium - nothing to do with dexamethasone.

 

Interesting indeed. Is there any literature about this?

I think the idea is that without the traction there's still pressure on the brainstem.

ok thank you for clarifying.

 

That's the idea but from what I could see when I looked in to this it is not a reality.
None of the pictures of PWME show pressure on the brainstem.
There are no pictures that I am aware of showing a gap between occiput and C1 due to traction - which would have to be the case if traction was removing pressure.
The discussion of radiographs talks of something like 'virtual upward displacement of the axis'. But the point is that this is not upward displacement. It is called virtual because it just mimics that visually.
I am pretty sure that this traction effect is purely invented. Whether the surgeon actually believes in it or not I have no idea.

 

The usual problem is that the occiput to C2 segment is fixed in relative flexion so that pressure on the cord from the axis continues or is even made worse. I don't know if there is literature but there probably is for RA. Surgical methods were explored in the 1990s that were abandoned because of poor results. I suspect there is information from then.

RA is easier though because the anatomical problem is obvious, with the cord or brainstem severely crushed (but no symptoms like ME). The problem with ME is that so far I don't think we have seen any images that even show brainstem compression so it is unclear whether the position of fixation matters.

 

Thanks, do you mean the Gilete paper? I'm not sure what diagram you are referring to? Or the Peul presentation?

Good point about the crushed brainstem without ME symptoms!!

 

Yeah, I didn't remember I posted it myself lol. Just saw it. Thank for pointing it out to me!

 

New EDS study of 223 #EDS patients about POTS, MCAS, CCI, TCS and chiara malformation:

https://t.co/VQwK0J379I

 

This looks like an abstract for a poster presentation at a meeting.
It also looks completely meaningless - being based on patients selected from a clinic that specialises in diagnosing people with these conditions, some of which probably do not even exist.

It is just private medical marketing.

 

Bragée ME-center hosted a webinar (in Swedish) on "the neck as the weak link", with Bo Bertilson on 24 April. It's about herniated discs, chiari and craniocervical obstructions.

(I haven't watched it. Sharing the link only as info, not a recommendation.)

Code:

https://player.vimeo.com/video/543216492

 

https://twitter.com/user/status/1438190714572128260

 

https://twitter.com/user/status/1438230439127355402