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

Discussion in 'ME/CFS research news' started by ME/CFS Skeptic, May 23, 2019.

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Page 74 of 77
  1. Trish

    Trish Moderator Staff Member

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    Is there a published protocol for the study? Or does that only apply with treatment trials?
     
    Trish, Sep 15, 2021
    #1461
    Anna H, Michelle, Invisible Woman and 5 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It should have protocol and ethical approval.
     
    Jonathan Edwards, Sep 15, 2021
    #1462
    Michelle, Invisible Woman, FMMM1 and 5 others like this.
  3. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Dx Revision Watch, Sep 16, 2021
    #1463
    Louie41, Kitty, Michelle and 3 others like this.
  4. Wyva

    Wyva Senior Member (Voting Rights)

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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, Oct 5, 2021
    #1464
    sebaaa, Binkie4, Michelle and 16 others like this.
  5. Ariel

    Ariel Senior Member (Voting Rights)

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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.
     
    Ariel, Oct 5, 2021
    #1465
    JemPD, Wyva, Peter Trewhitt and 3 others like this.
  6. Grigor

    Grigor Senior Member (Voting Rights)

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    Grigor, Dec 9, 2021
    #1466
    Binkie4, Hutan, MEMarge and 3 others like this.
  7. Grigor

    Grigor Senior Member (Voting Rights)

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    Grigor, Mar 29, 2022
    #1467
    Lilas, cfsandmore, shak8 and 6 others like this.
  8. Grigor

    Grigor Senior Member (Voting Rights)

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    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:

     
    Last edited: May 15, 2022
    Grigor, May 15, 2022
    #1468
    sebaaa, Peter Trewhitt, Cheshire and 11 others like this.
  9. Trish

    Trish Moderator Staff Member

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    Last edited: May 21, 2022
    Trish, May 21, 2022
    #1469
    Peter Trewhitt likes this.
  10. Grigor

    Grigor Senior Member (Voting Rights)

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    542
    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.

    https://www.youtube.com/watch?v=THNfgisU19w




    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...
     
    Grigor, Oct 25, 2022
    #1470
    NelliePledge, CRG, Cheshire and 6 others like this.
  11. Braganca

    Braganca Senior Member (Voting Rights)

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    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.
     
    Braganca, Oct 26, 2022
    #1471
    hinterland, Hutan, JoanneS and 17 others like this.
  12. Grigor

    Grigor Senior Member (Voting Rights)

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    Grigor, Feb 16, 2023
    #1472
    ladycatlover, Hutan and Peter Trewhitt like this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    This looks like serious disinformation from a certain Dr Jennifer Curtin, associated with Kaufman and Chheda?
     
    Jonathan Edwards, Feb 16, 2023
    #1473
    ladycatlover, sebaaa, Hutan and 5 others like this.
  14. Trish

    Trish Moderator Staff Member

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    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

    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:
    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.
     
    Trish, Feb 16, 2023
    #1474
    Mfairma, John Mac, RedFox and 10 others like this.
  15. Sean

    Sean Moderator Staff Member

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    :grumpy:
     
    Sean, Feb 17, 2023
    #1475
    JemPD, ladycatlover and Trish like this.
  16. Grigor

    Grigor Senior Member (Voting Rights)

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    Last edited: Feb 17, 2023
    Grigor, Feb 17, 2023
    #1476
    Hutan, Peter Trewhitt and RedFox like this.
  17. Trish

    Trish Moderator Staff Member

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    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.
     
    Trish, Feb 18, 2023
    #1477
    Barry, Milo, Sean and 5 others like this.
  18. Grigor

    Grigor Senior Member (Voting Rights)

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    Thank you so much Trish. Quite shocking she's suggesting buying a collar from Amazon... I'm laughing but really out of disbelief...
     
    Grigor, Feb 18, 2023
    #1478
    Barry, Milo, Sean and 4 others like this.
  19. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    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)
     
    Last edited: Feb 18, 2023
    Hoopoe, Feb 18, 2023
    #1479
    Barry, Sean, RedFox and 5 others like this.
  20. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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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)

    From the abstract for Cervical spine immobilisation in the elderly: a literature review (2018) —

    (Paywalled, so I haven't seen what the exploration showed.)
     
    SNT Gatchaman, Feb 18, 2023
    #1480
    Milo, Sean, Hutan and 4 others like this.
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