A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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Recovery of 3 Severe ME/CFS Patients After Cervical Spinal Stenosis Surgery (2018 / Peter Rowe)

Discussion in 'General ME/CFS News' started by Jesse2233, Feb 4, 2018.

  1. xrayspex

    xrayspex Senior Member

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    u.s.a.
    another thing that made it hard to sort out for me is I consulted with Paul Cheney about 10 years ago and his interpretation then was that the stenosis/chiari research connection was induced by periods of increased inflammation from CFS/ME caused worsening of those conditions with swelling from inflammation and thus the wax and wane. So it became a chicken/egg conundrum for me.....which one was more at the root....some obscure viral or bacterial infection or a structural deficit .....
     
    Last edited: Feb 6, 2018
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  2. Silencio

    Silencio Senior Member

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  3. PeeWee

    PeeWee

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    This seems to make so much sense. There’s a company that does private mris at locations in London for £199 each if you can get there early on Sat/Sun mornings. You need referral by a doctor, we think we could get that, but either from Elle’s GP or her nutritional specialist doctor. Does anyone know, in language the doctors would understand, what bit we are asking to have mri’d? As in, is it the spinal chord, the upper spine, something else ...
     
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  4. Zoidberg_DC

    Zoidberg_DC night and day of the living dead

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    I think the problem is that conventional medicine claims that this squeezing of the spinal cord should only produce symptoms of muscle weakness, pain and sometimes headaches but these patients were having the whole cavalcade of symptoms that come with what we call CFS. I am here at these forums because I have almost all the CFS symptoms and I have a syrinx which also squeezes the spinal cord (just from the inside outward). The doctors don't believe the syrinx explains all my symptoms (certainty not the crushing fatigue). So perhaps the conventional list of symptoms of spinal stenosis are woefully inadequate or there is a cormorbidity going on
     
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  5. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Interesting, think im gonna do the spine and head MR i originally cancelled
     
  6. perrier

    perrier Senior Member

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    Dear Richard,
    I am certainly going off thread. But you mention something of interest to me. You say that Dr McGregor suggested that folks who get CFS, in their preCFS days would not have been the same kind of normal as people who did not have the CFS pattern.

    Can you elaborate a bit?

    I ask because our severely ill family member had constant strep throat infections as of the age of 6 or 7 until the late teens.

    Might this suggest that the immune system was already in trouble?
    -------------------

     
    Last edited by a moderator: Mar 15, 2018
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  7. Neunistiva

    Neunistiva Senior Member

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    My severely ill daughter too! Except it was a strep infection the first few times, starting at the age of 8, afterwards her throat swabs were negative but her throat would get very red and inflamed. She didn't get ME/CFS until she was 22.
     
  8. perrier

    perrier Senior Member

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    Dear Neunistiva
    Yes, our daughter also would have red and inflamed throats with or without infection. And the age of CFS was 23.
    Other than that, how was your daughter? Ours was a high achiever at school, and played sports, and went to summer camp, and worked as a life guard summers. Then after a minor surgery, came 2 infections, and then began the 'living death.'
     
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  9. scisolver

    scisolver

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    I've been wondering what ever happened to the P3C hypothesis. Last were heard of this was 2011 at the Bateman Horne center for ME/CFS Fibromyalgia. They said surgery and physical therapy worked and even created a DVD on how to treat it for some help group. There were supposed to be large trials in Europe to prove it and that is the last I heard of it and then the Dr. behind it retired some years later.
     
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  10. scisolver

    scisolver

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    You have to get a positional MRI, not a regular one if I remember correctly, and it is not part of the standard options to bill for is what they said.
     
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  11. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Yea but it wont assist me treat anything though, although i imagine you would see hypoperfusion or whatever its called^^
     
  12. scisolver

    scisolver

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    Well, people do surgery I've heard for that. Somebody on the Fight ME/CFS just posted she was going to get surgery I think. The original doctor who reported this also said he deviced some kind of physical therapy that was supposed to work too and produced a DVD for some ME/CFS group.

    I wouldn't be jumping into surgery. However, at the very least the more objective evidence you have the better, especially for getting financial assistance if you can't work.
     

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