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

lunarainbows said:
Dr Gilete now saying that he is a pioneer in treating ME when they fulfil criteria for CCI

https://drgilete.com/neurosurgeon-spine-surgeon/

“he has been introduced to a group of patients in Europe who suffer from what is known as connective tissue disorders, such as Ehler-Danlos Syndrome (EDS), Marfans and others. He is also pioneer in the treatment of Myalgic Encephalomyelitis (ME) on those cases who fulfill criteria for CCI and/or AAI. Our Team are Europe’s surgeons to offer lifesaving and improvement to quality of life with personal evaluation and surgical solutions to address these cases.“
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Sorry if this has already been mentioned but I took a look at Dr Gilete's website because someone recommended it in my group and the part in bold is now changed, the ME/CFS part has been removed: "He is also pioneer in the treatment of those cases who fulfill criteria for CCI and/or AAI."

Also, a quick search on the website returned no results in connection with ME/CFS. I haven't watched the testimonials from patients but it looks like he is distancing himself from the "ME spinal surgeon" role. (Which doesn't necessarily mean that he is not doing it any more though - I know nothing about that.)
 
Wyva said:
Sorry if this has already been mentioned but I took a look at Dr Gilete's website because someone recommended it in my group and the part in bold is now changed, the ME/CFS part has been removed: "He is also pioneer in the treatment of those cases who fulfill criteria for CCI and/or AAI."

Also, a quick search on the website returned no results in connection with ME/CFS. I haven't watched the testimonials from patients but it looks like he is distancing himself from the "ME spinal surgeon" role. (Which doesn't necessarily mean that he is not doing it any more though - I know nothing about that.)
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Thank-you for the information, @Wyva - I would imagine he may have been concerned to be saying this in public? I am worried about it all.
 
Another article about CCI. Again with Dr Wilco Peul who is very critical about Gilete his work. I agree with him on quite a few points but I don't understand why he doesn't mention the fact that he performed surgery on 4 patients himself. 2 of them had to have a corrective surgery afterwards. Also I'm not sure what 20 million they're referring to...

PDF is Google translated.



Original version:

 
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2022 ASAP Chiari & Syringomyelia Conference
Chicago, IL

Title: Craniocervical Fusions: Revisions

Speaker: Paolo A Bolognese, MD

In this 2022 presentation, he talks about CCF Complications & Revisions.



He starts by addressing a paper that came out in 2021 from Turkey that scared people as it tracked 128 CCF patients and showed “quite elevated” complication rates.

https://link.springer.com/article/10.1007/s00586-021-07037-2

He then contrasted that to his study that came out weeks later tracking 250 patients using the condylar screw method which showed much better figures.

https://link.springer.com/article/10.1007/s00701-021-05039-z

The surgeries still give me the creeps...
 
I was in the original Facebook group for CCI. I do think there are a percentage of people who may have been misdiagnosed with ME who actually have cervical spinal problems and who did benefit from surgery. It seemed to me that people who had more obvious neurological problems (pain, numbness, tingling, tremor, paralysis in specific parts of body that could be linked to cervical spine) had good outcomes. Some had very good outcomes and are back to living life.

But there are a lot of people who did not do well with one or more surgeries, and some left much worse off. Some of the surgeries are traumatic to recover from or leave people with new problems. I think people have become aware of this and are less likely to pursue surgery.
 
I watched the video. I thought it was very badly presented with no indication that there is no evidence this has any relevance to ME/CFS or Long Covid, and with what seemed like random lists of common symptoms and very poor descriptions of the structural issues. Very amateur.

Here's the paper referred to and its opening paragraph:

Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: International expert consensus recommendations
Russek et al, 2023

Experts in symptomatic generalized joint hypermobility (S-GJH) agree that upper cervical instability (UCI) needs to be better recognized in S-GJH, which commonly presents in the clinic as generalized hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome. While mild UCI may be common, it can still be impactful; though considerably less common, severe UCI can potentially be debilitating. UCI includes both atlanto-occipital and atlantoaxial instability.

In the absence of research or published literature describing validated tests or prediction rules, it is not clear what signs and symptoms are most important for diagnosis of UCI. Similarly, healthcare providers lack agreed-upon ways to screen and classify different types or severity of UCI and how to manage UCI in this population. Consequently, recognition and management of UCI in this population has likely been inconsistent and not based on the knowledge and skills of the most experienced clinicians.

The current work represents efforts of an international team of physical/physiotherapy clinicians and a S-GJH expert rheumatologist to develop expert consensus recommendations for screening, assessing, and managing patients with UCI associated with S-GJH. Hopefully these recommendations can improve overall recognition and care for this population by combining expertise from physical/physiotherapy clinicians and researchers spanning three continents. These recommendations may also stimulate more research into recognition and conservative care for this complex condition.
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I note that in the talk there was barely a mention of the sort of things that indicate AAI/CCI, which are serious neurological signs that a neurologist should find.
Here are some listed in the paper referenced:
Brainstem and vertebral artery compression can result in tinnitus, vertigo, visual disturbance, diplopia, dysphagia. Cranial nerve compression can result in dysphagia, dysarthria, loss of facial sensation, facial pain. Compression of the superior spinal cord and cervicomedullary junction can result in myelopathy, weakness, gait impairment, impaired dexterity, paresthesias, hyperreflexia, loss of abdominal reflex, Hoffman’s reflex, Babinski reflex, spasticity, loss of proprioception, bowel or bladder changes
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Nor was there any mention of why they think any of this has any relevance to ME/CFS or LC.

Sadly, I think Gez Medinger is being led up all sorts of dubious paths and quackery and doesn't have the sense to realise how much he's leading people to worry and spend money on investigations and treatments that have no relevance to them.
 
Third video in the series.

The video starts straight in with descriptions of the types of MRI scans used to diagnose Chiari, and then on to different scans used for diagnosing CCI/AAI including seeing different ranges of movement which she demonstrated vaguely by moving her head around and mentioned different surgeons require different types of imaging.
Then on to tethered cord and again throwing around random information about different scans that can be used with a mention of 'if there are symptoms'. A mention of about half of patients with tethered cord have bladder and bowel issues.

5.30 minutes: Gez then interrupts to ask about prognosis and treatment.
First about working with a physical therapist to strengthen neck muscles and they may prescribe wearing a collar. She does warn that collars should be fitted properly and badly fitted collars can cause harm.

Then on to injections in the ligaments - she says there are only 2 people in the US doing these. 'To try to get the ligaments to strengthen a bit'. Includes stem cells.
She says it's a high risk area to inject into but with her patients she hasn't seem complications. Mixed outcomes.

7.45 minutes - Then on to surgical options. Mentions chiari then goes on to talk in lay terms about fusion of different levels of the neck vertebrae. 'That's a big surgery and not everyone needs it'.
'If someone is very severe then surgery is the option you have to go for'.
Without explaining what is 'very severe'.

On to tethered cord surgery. 'if the symptoms are progressive, then surgery is necessary. Complications probably lower than 1 percent.

A mention of neurological symptoms.

Question - are there many surgeons who do this? Tethered cord mostly in children. Surgeons who do kids who are more hypermobile are familiar with what to do???
Fewer surgeons doing neck surgery in hypermobility.

Question - what can patients do if they suspect they have a diagnosis and are waiting to get diagnosis and treatment.
Answer - buy a specific type of collar on Amazon to either 'stabliise your neck' or provide some traction - with some warnings to take it slowly and carefully.
Find a physical therapist to try gentle traction on you.
She suggests if you feel better with traction that is a 'strong signal' you should go further with this.
But she does suggest other things can be helped by traction, so consult a physical therapist.
NOTE: This is the doctor on the video suggesting buying collars on Amazon and experimenting. I think that is highly irresponsible.

At the end Gez advertises his book again, and draws attention to the 2 other videos in the series.

I missed the first one that apparently tells you why all this might be relevant for pwLC. I guess I have to watch that now.
 
My neck pain improved a lot with just strengthening the muscles and stretching. We patients tend to lose muscle strength and often spend much time looking on screens or with a pillow under the head which could increase neck pain.

I didn't believe that I had any of the problems discussed here. I also have this other problem, where I'm not sure if it's normal or not, and where looking at the ceiling right above my head when sitting, triggers a malaise. I can see how sick people could suspect that they have some serious neck abnormality (they're hurting all over, have weird sensations in response to normal movements and postures, and are desperate to find some explanation that provides a way forward)
 
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It seems there are a range of cervical collars that anyone could buy on Amazon. Maybe this could help someone evaluate if traction or immobilisation could help with a brief trial, but long term use could be tempting, and have consequences.

For prolonged hard collar use: Adverse Events Relating to Prolonged Hard Collar Immobilisation: A Systematic Review and Meta-Analysis (2022)

The most commonly reported complications were pressure ulcers, dysphagia and increased intracranial pressure.
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There is significant morbidity from prolonged hard collar immobilisation, even amongst younger patients. Whilst based upon limited and low-quality evidence, these findings, combined with the low-quality evidence for the efficacy of hard collars, highlights a knowledge gap for future research.
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From the abstract for Cervical spine immobilisation in the elderly: a literature review (2018) —

We explore evidence surrounding the complications that can arise from cervical spine immobilisation, including the development of pressure sores, raised intracranial pressure, dysphagia, breathing difficulties, delirium, compliance issues, mobility and functional outcome.
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(Paywalled, so I haven't seen what the exploration showed.)
 
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