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

The angles are objectively defined but nobody actually knows what they mean.

Henderson seems to be the chief publisher in the field of non-traumatic/non-erosive CCI. He says it is 'reasonable' to measure these angles. Or that a certain angle is consistent or suggestive of CCI. As far as I am aware nobody has published suggesting that surgery should be performed on the basis of these angles.

But so far we have not seen a single angle in a relevant case with a medical interpretation.

 

It is a standard part of the general medical assessment that should be the basis of any significant medical diagnosis. The fact that GPs have no time to do any of that is to me an indication that the current model of general practice is an unsafe and inappropriate anachronism.

General practice works on the basis that you guess the most likely diagnosis and assume it is right until something goes wrong. I am not sure it exists so much in other countries. Unfortunately everyone in medical politics is convinced we need more of it.

 

Well that made me grumpy and I should not be surprised but I have to say I am. It would seem they have reinvented the wheel to be a square. I knew there were vessels but I thought or it made it sound as though they were a second level and although they knew from war trauma units it was best to go in the thigh bone they didn't exactly know why. I thought that was a bit odd and am glad I asked you. They are so very very naughty.

 

I'm just catching up with this thread, and haven't got through all of it yet, so sorry if this has already been said.

I wondered whether the improvement some people are feeling after this surgery is due to its general impact on the body - a paradoxical improvement under stress? A few of us here have noted that when we're under extreme physical stress (for example, we're dealing with some major demanding crisis, or have undertaken a long and taxing journey, or have been unusually short on sleep), we enjoy a paradoxical relief of symptoms for a few days after.

We know that surgery is hard on the body in all kinds of ways. I don't know a whole lot about the details, but I read that CRP is significantly raised in many people after major surgery, suggesting it triggers a systemic inflammatory response. I just wondered whether this response might manifest itself in a remission in some people?

 

https://www.itv.com/news/tyne-tees/...ers-huge-setback-after-life-changing-surgery/

ITV REPORT

31 May 2019 at 2:22pm

Woman with rare genetic condition suffers huge setback after life-changing surgery

...Melanie had spent years confined to bed, but after travelling to Spain for the life-changing surgery in July 2017, she'd begun leading a full life. Melanie raised over £160,000 for the treatment to fuse her skull, neck and spine to stop them dislocating. The surgery was not available on the NHS.

Now, following an operation on her knee, her progress is rapidly reversing...

Full report

 

That sort of thought had crossed my mind too. There is a lot of glib talk about stress causing ME but maybe stress, in the right form, is one way of reversing it. If ME is an abnormal metastable signalling system state then maybe in some forms it can be knocked out of its 'well' and the signalling system return to normal.

Of course the problems are 1. that working out how to predict what might be an effective but safe form of stress would be hard and 2. the metastability might only be susceptible to stress in a small subset of people.

In more general terms I do wonder whether there may be two quite distinct forms of ME, one being metastable and the other being more a new stable state that may not realistically be open to reversal. That would not mean the second form was not treatable but it might need extended use of a modulating agent - rather as dopamine agonists are used for Parkinsonism or thyroxine for Hashimoto's disease.

 

Some patients say they feel good after a fever.

 

I really wish we had some medical documentation of what is happening for patients like this. CCI surgery is available on the NHS.

 

Is there anything significant in that "The surgery WAS not available on the NHS"? Has it become available since the date of her surgery, or is it available but just not for her condition?

 

Or is it available subject to approval of funding on a case by case basis?

 

from a Facebook post (from 2017)
"After my MRI scan I was told that I would be in need of surgery. I was relieved to have answers but mostly terrified, as I was also told there are currently no EDS specialist neurosurgeons in UK and those that do exist are overseas."
https://www.facebook.com/EhlersDanlosUK/posts/1456332651085461:0

eta: more recently from Karen Scott
"“There is no neurosurgeon in the UK able to perform this operation on those with EDS"

 

In the earlier, July 13, 2017 article, it also says: "The operation was not available on the NHS."

 

I do not understand this. Surgery for CCI is routine in the NHS. Whether or not the patient has EDS I do not think makes any real difference. Upper cervical fusion was done on my RA patients going back to the 1980s. The methods have changed but as far as I am aware are well known. Anyone sufficiently severely affected with problems with CCI to need to be in bed would be operated on urgently in the NHS. If no regional surgeon was available, which seems unlikely, they would be referred to Queen Square. Funding would be automatic for something of this sort.

 

I saw a fundraiser just yesterday for a young woman in NZ where the same claim was made, i.e. that CCI surgery is not available there. This surprised me given that NZ is an advanced first-world country and made me wonder whether mainstream surgeons there simply saw no indications for such an operation.

I've been thinking something similar. I too have had major improvements with stressors like infection and major life events. I mean, an infection makes me feel so good initially that people even comment on how fantastic I look. I can imagine that sham surgery could be a very powerful treatment for some.

I've previously hypothesised years ago on the other forum that placebo therapies such as LP don't work by reducing stress (as they claim); on the contrary, they likely temporarily flood the catecholamine and endogenous opioid brain circuits which in rare cases seems to be enough to slingshot a person out of the sickness steady-state it's in. The same probably goes for other sham treatments like rituximab, antivirals etc.

Some of us seem more susceptible to perturbations of internal homeostasis than others. I noticed that I notice huge effects, good and bad, from any intervention I try and it's not unusual for me to be able to walk 10,000 steps one day only to fall down to literally 300 the next whereas other patients who try those exact things notice nothing whatsoever and their illness seems pretty stable the same day in day out, for years on end, except for PEM of course.

 

in neither report on this site it is said, what was her "best outcome" after surgery ?
only that until recently she didnt need the collar, or did i misunderstand that.

was she ever able to walk around or be a couple of hours out of wheelchair after surgery ?

why did she need a knee surgery ? was this a result of the spine surgery ?
because she was walking or did it happen due to progressing EDS ?

is there any more information on this case ?

- best result after surgery
- when at bestest (time after)
- how long did it last
- what were new symptoms / worsening of old symtpoms
...

 

https://twitter.com/user/status/1135874309401055232

 

https://forums.phoenixrising.me/thr...syndrome-a-link-to-post-infectious-cci.76494/

A link has been posted on PR about post infectious cervical instability, with links to related abstracts. Apparently Grisel Syndrome mostly affects children but there is a link to a fairly recent abstract (2014) of a write up of two adult cases who were operated on. The poster was wondering if this condition might also refer to @Jeff_w and @JenB.

https://www.researchgate.net/public...and_Rationale_for_Early_Surgical_Intervention

Perhaps you might comment @Jonathan Edwards.

Eta: clarity

 

Wow, the Jackson Labs "Advances in ME/CFS" blog has posted about this without additional comment, therefore, arguably, endorsing it unreservedly, https://jaxmecfs.com/2019/06/04/jennifer-breas-me-cfs-is-in-remission/

 

These cases are so rare and the description so limited that I am not sure they tell us much.
The only mechanism I can think of is bone or ligament erosion from sepsis - the bone loss might appear after infection has been treated with antibiotic. That seems to be the implied mechanism in the case reports.

That sort of bone erosion would be very obvious on plain x-ray or MRI/CT as an erosion of the odontoid peg or an increase in anterior atlanto-odontoid distance on neck flexion (should be no more than about 2mm. As far as I am aware there is no suggestion that anyone with ME has had these findings on imaging.

So I don't think this situation is of any relevance.