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

Even if we do get "reliable" figures to what extent are they trustworthy?

We know that the BPS cabal once happily quoted false figures as reliable evidence of the success of GET/CBT.

In surgery there is the whole argument about mesh used to treat gynae issues and hernias. Surgeons were quite happy operations were successful even when patients were left incontinent and in pain.

We certainly can't trust figures provided by those carrying out the surgery, in my opinion.

 

It does seem that some of these neurosurgeons are giving a dramatic prognosis to patients if they were to have no surgery. I can't really judge the accuracy of such claims, but really hope that these aren't overstatements.

 

Seems like the best answer to the question of safety and prognosis is we don’t know.

 

This is what MEpedia currently presents:

https://www.me-pedia.org/wiki/Craniocervical_instability#Outcomes.2C_risks_.26_complications

Surgery

When non-invasive treatments for CCI fail to work, occipito-cervical fusion (OCF) can be considered.[13] OCF is a surgery that aims at a biomechanical stabilization of the craniocervical junction. Patients with objective radiological findings, a clinical picture supportive of the diagnosis, a positive response to traction, and who are significantly impaired may be candidates for this surgery. A common method involves internal fixation of the upper spine to the skull by mechanical rods and screws. (However, rod-wire, rigid rod-screws, occipital hooks and cervical claws are all methods currently in use.[47]) During surgery, titanium hardware is used to fixate the occiput, axis and atlas (i.e., C0 to C2) while rib graft or cadaver bone graft is used to help the bones fuse together. Wire methods are less biomechanically stable than rod methods and have high rates of dural laceration.[47] Screw and rod fixation methods have lower complication rates and higher rates of successful fusion.[48] Fusion rates across all hardware methods range from 89 to 100%.[47] When cervical instability is present below C2, additional vertebrae may also be fused if the patient is symptomatic.

Outcomes, risks & complications

The outcome of OCF is generally favorable with most patients experiencing symptom relief post-surgery.[13] The complications of OCF however can be serious[49] and occur in an estimated 7% to 33% of patients.[3][48][2][50][47] Common complications include screw failure, wound infection, dural tear and cerebrospinal fluid leakage[2] In some cases revision surgery is needed to treat infection or to remove hardware. Severe complications can include meningitis and accidental injury of the vertebral artery by misplaced screws.[51]

A meta-study of 2274 procedures across 22 studies[47] found the following complication rates:

Complication type Prevalence rate

Hardware failure after fusion non-union 7%
Wound infection 3.8%-11%
Vertebral artery damage 1.3%-4.1%
Dural tears 0% to 4.2%
Meta-studies place the rate of death from fusion surgery at 0-0.6%.[47][48]

Side effects

OCF causes a substantial reduction in the neck’s range of motion, estimated at approximately 40% of total cervical flexion–extension.[52]

 

That might be a bit premature? As I understand it this is high risk surgery at the best of times, even assuming a proper diagnosis has been made and the surgery performed very competently. There may be no one at fault.

 

Sure, I was replying to a post above mine about what can be done / what private doctors do when the outcome of the procedure is not what the patient thought it would be. So was saying a complaint to a GMC it one of the options that could potentially be taken, as private doctors are Also answerable to the GMC as are NHS doctors. I wasn’t really specifically commenting on whether I think it should be done, whether it’s the right time etc.

 

Sorry, crossed wires on my part.

 

Said person had vEDS and knew it was a huge risk to have the surgery. It isn't like that was a case of uninformed choice. it was a risk:benefit equation that they obviously felt was worth the chance.

My investigation into CCI revealed that I had such instability in my c-spine that it caused cervical myelopathy. I had a disc in that same area that was so degenerated that it was removed. I had been seeing several specialists, all of whom dismissed my symptoms and said that hEDS does not cause any problems, no big deal, yadda, yadda. The end of the story in my case is that it did cause big issues. I think that the people who find that they have CCI/AAi are most likely to be folks with some form of EDS or hypermobility spectrum disorders. I agree that not everyone with ME/CFS has CCI/AAi or needs the surgery. It is a big deal. A really, really big deal. IT should not be entered into lightly. Thankful that in my case the instability was lower. However, who knows what will end up wearing out in the future. I am suspect for occult tethered cord and I have at least one more area in my spine that needs addressing.

 

Big article from Norway today about a woman with ME who is on her way to Barcelona for neck surgery. She's been sick for 5 years and the family wonders if an accident involving a fall when she was 16 might be the reason for her ME.

Some Norwegian doctors and specialists warn against this type of surgery, including Wyller.

The article says that Swedish and American researchers now believe to be one step closer to solving the ME riddle: that there is a connection between ME and neck damages. Here's a (hasty) translation of some of the article:

"Last spring the profiled ME patient, the American Harvard studien Jennifer, Brea, declared herself recovered after neck surgery. This inspired the Stanford professor Ron W. Davis, who has initiated a research project looking into the connection between neck instability and ME.

For several years Swedish ME researchers have been interested in the same theme. Before last Christmas ME researchers at Karolinska hospital came with a (for now unpublished) study pointing towards a possible connection between neck injuries and ME.
- 80% of those ME patients we have examined, show signs of damages in the neck, says professor Bo C. Bertilson, research leader at the ME center at Karolinska Institute in Stockholm.

A majority of the patients have clinical and radiological findings pointing towards a damage in the pass between head and neck, according to the study.

The Swedish researchers believe this can lead to a too high inter-cranial pressure, a change in the cerebrovascular flow and the influence on nerves, which can give many of the ailments ME patients have. And that ME in many may be a result of wrong follow up after neck instability.

Bertilson says he doesn't believe all ME patients have neck injuries, and that their findings require more research, but:
- When you examine ME patients, it's striking: It's difficult not to meet one patient without signs of previous neck injuries when it comes to fibromyalgia and ME."

After an upright MR in London the patient in the article was told by radiologist Francis W. Smith at the private clinic Medserena Upright MR Center in London that her cervical vertebrae almost didn't hang together at all. Of the 600 Norwegian necks he had looked at, this patient's neck was the worse.

https://www.vg.no/forbruker/helse/i/6jgwp3/monas-desperate-haap

 

The issue that strikes me here is we have no way of balancing the numbers.

Certain doctors will claim that a high percentage of their patients will have a certain type of abnormality, while another will insist that's rare and that many of their patients have some other, entirely different abnormality. Or none at all.

There will be an element of self selection and speciality bias in the patients a specialist sees. You're more likely to see a neurologist if their are neuro symptoms or an endocrinologist with endo symptoms. So can we safely extrapolate the data from one doctor, or even speciality out to the wider ME patient population? I don't think we can with any great certainty.

This is yet another area where allowing a school of thought, be it BPS or otherwise, to stifle curiousity about the nature of a disease is harmful. If the various government health authorities were honest about the disease ME we could have had autopsy information from ME patients who have died over the last 30 years. The brain and structures around it being difficult to examine in live patients.

Apologies if talk of post mortems upsets anyone but while I wouldn't donate organs after death (because of ME) I would donate organs to ME research. Not only might it provide more information about the disease, it might save some from surgery or other interventions that might not be the best way forward for them.

Edited - clarity

 

The criticism is sensible but the truth is that if the BPS model and various psychosomatic ideologies had not sabotaged everything and we had access to adequate medical services none of this would be happening at all. The risk is seen as worth it precisely because the normal way of solving this problem has been broken on purpose. Mainly because we still know so little about this disease and this is all 99% the fault of those who have made it their mission in life to destroy our lives.

 

New open article from the newspaper VG about same theme

Bertilson is interviewed again.
Same is Jonas Bergquist who says:

"Neck injury or neck instability can lead to an impact on the upper spinal cord that can cause an inflammatory reaction," said Bergquist, a researcher at ME in collaboration with the American universities Stanford and Harvard.

- 60 to 70 percent of the ME patients we examined have evidence of autoimmunity.

That is, the immune system overreacts and works against the body's function and leads to a functional impairment: Many have pain, gastrointestinal challenges, problems with blood pressure regulation and so on.

- Hopefully we will be able to say more about this in a few years.

The Norwegian ME Association, prof. of neuro medicine Nygaard, prof. Wyller, senior doctor at the National Competence Service for CFS/ME Ingrid Helland and head of research at the Institute of Public Health are also interviewed.

VG: Svenske forskere kobler ME til nakkeskader
google translation: Swedish researchers link ME to neck injuries

Several posts about a more general followup article about MD and judge for the National Insurance Court Georg Espolin Johnson have been moved to
News from Scandinavia

 

Apparently the earnings of an episode of this Dutch Tv-quiz went to a mother with two daughters with ME/hEDS/POTS/CCI so they can have fusion surgery in Barcelona.

https://www.youtube.com/watch?v=JCCkhAImDBg

I'm just posting this to indicate how widespread these stories are.

 

According to a comment on Jenny's @stroopwaffle Twitter feed, there is another UK patient about to have surgery in the UK, described by her mother as having "hEDS, ME, MCAS" and needing to wear a collar to function. The mother says she is now very concerned about the outcome of this surgery.

 

I can't say that I'm surprised that "ME/CFS/vEDS/CCI/AAI/MCAS/PLTS . . ." has turned into a designer or 'fashion' diagnosis.

 

Drawing attention to patients jumping onto a risky treatment lacking a solid evidence base is going to encourage the 'fad disease' narrative. It was an important part of the 90s medical narrative of unreasonable patients needing to be psychosocially managed without informed consent.

Best wishes to all the patients affected.

 

Yes, unfortunately it is.

Loath though I am to criticise a fellow patient who just wants to get well, patients who claim to have been cured by treatment X and then by treatment Y and then something else fuels this kind of patient as attention seeking or learning illness behaviours from other patients narrative.

 

Michael VanElzakker and Dr Paulo Bolognese:

https://twitter.com/user/status/1224004108757147650


https://twitter.com/user/status/1224004305319014400


https://twitter.com/user/status/1224010492349427719

 

I find this quite distressing to see Dr van Elzakker apparently giving credence to this surgery. There is no science here. There are no proper trials and no data have been released publicly when they should have been long ago.

I don't know what Dr Van E means about MRIs but so far I haven't seen a single abnormal MRI in all of this.

I may be wrong but I have this feeling that 30 years ago people had more sense than this. Biomedical science was done properly for a while. Now the level is only superficially distinct from Gwyneth Paltrow much of the time.[/QUOTE]