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Recovery of 3 Severe ME/CFS Patients After Cervical Spinal Stenosis Surgery (2018 / Peter Rowe)

Jesse2233

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In a nutshell spinal impairment may have been creating neuroinflammation and reduced blood flow.

Patients went from home bound back to vigorous exercise and full time work.

One was post-infectious

Neurological findings included > 3+ deep tendon reflexes in 2 of 3, a positive Hoffman sign in 2 of 3, tremor in 2 of 3, and absent gag reflex in 1 of 3. The cervical spine canal diameter in the three patients ranged from 6 to 8.5 mm. One had congenital cervical stenosis with superimposed spondylosis, and two had single- or two-level spondylosis. Anterior cervical disc replacement surgery in two patients and a hybrid anterior cervical disc fusion and disc replacement in the third was associated with a marked improvement in myelopathic symptoms, resolution of lightheadedness and hemodynamic dysfunction, improvement in activity levels, and improvement in global ME/CFS symptoms.

Full paper: https://link.springer.com/article/10.1186/s12967-018-1397-7
 

Neunistiva

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Do I understand right that they all satisified CCC Criteria and IOM Criteria but that they also had pathological neurological examination findings?

I would think that neurological examination turning up with something would have promted further investigation before settling on ME/CFS.
 

Jesse2233

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Do I understand right that they all satisified CCC Criteria and IOM Criteria but that they also had pathological neurological examination findings?

I would think that neurological examination turning up with something would have promted further investigation before settling on ME/CFS.
Yes this seems to be the base. Their neurological findings were initially dismissed as psychiatric
 

MartinK

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This is interesting!
I have a bad back from child age... my CFS starts from day to day with flu-like symptoms...
But I had no detailed neurologic examination for this bad 4 years with CFS...

Maybe my non-functional treatment with ATBs and antivirals has a connection with my bad back...
Inflammation...cold hands/feets/ ...occasional headaches and low pressure

interesting! I will find more! Thanks!

Martin
 

pibee

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Very interesting.

I never had neck pains, but I always even as kid liked sleeping with my neck/head hanging off the bed, I tried to google if there are other people mentioning it, but all I could find is dogs with EDS sleeping in such weird positions.
 

Hip

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All three patients treated made a 40 point improvement on the Karnofsky scale (see fig 4C), a massive improvement. It corresponds to a 2-level improvement on the ME/CFS scale of: Very Severe – Severe – Moderate – Mild – Remission.

Cervical spinal stenosis is not common in ME/CFS, though, but the authors say it might be more common in severe ME/CFS:
Although cervical stenosis does not appear to be a common abnormality among those with ME/CFS, its prevalence has not been the subject of formal study. We would expect cervical stenosis to be more common among those with more severe forms of the illness.

When you hear of these occasional cures of ME/CFS through yoga, it makes me wonder whether that might be because the yoga was able to fix an undiagnosed spinal stenosis that was causing ME/CFS.

The spinal stenosis causes a compression of the nerves, interrupting or impeding nerve signals. So possibly those impeded nerve signals can cause ME/CFS.

Although spinal stenosis can also cause inflammation, so possibly that might be involved in this cervical spinal stenosis etiology of ME/CFS. There are cases where inflammation simply from a jaw bone cavitation infection has caused ME/CFS or a condition symptomatically identical to ME/CFS, so conceivably localized inflammation in the spine might also cause ME/CFS.



I think this paper is a repeat publication of this earlier 2016 paper on the same three spinal stenosis ME/CFS patients.
 
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Richard7

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In the absence of evidence from randomized trials, we cannot exclude a coincidental improvement or a placebo response to surgery. However, we consider this less likely given the myelopathic examination findings, the demonstration of spinal cord compression on MRI scans, and the lack of a placebo response to multiple previous interventions that included cognitive behavioral and psychiatric treatment.
(my bolding and italics)

We speculate that a negative bias toward the ME/CFS label and the presence of co-morbid anxiety may have distracted attention from the neurological findings.
 

Richard7

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In my ignorance it seems suprising to me that patient 3 was able to go through life normally until she returned home from a trip abroad at 31.

I would have thought that this sort of problem, if it was severe enough to cause her symptoms, would have caused them earlier.

In his presentation at Stanford last year Neil McGregor's said something about the DNA showing that the normal experience of life for his subjects pre ME/CFS would not have been the normal of people who who did not have the ME/CFS DNA pattern.


I wonder if there was something similar here, if these patients were having trouble but able to manage until something tipped them over the edge.
 

echobravo

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When you hear of these occasional cures of ME/CFS through yoga, it makes me wonder whether that might be because the yoga was able to fix an undiagnosed spinal stenosis that was causing ME/CFS.
I’ve had the same thought. The improvements I saw in India last Nov/Dec came after 2-3 weeks of deep tissue massage++, but in that third week I started daily yoga which was tough on my back & neck issues - from a car accident in my teens. Also, in week 3 the doctor started to work specifically - foot massage - on the stiff (and partly numb) muscles in the affected areas of my upper back and neck.

Makes me wonder if that car crash, the 40 years of chronic pain after (and who knows, maybe a spinal damage?), eventually contributed to getting ME..
 

Hip

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Makes me wonder if that car crash, the 40 years of chronic pain after (and who knows, maybe a spinal damage?), eventually contributed to getting ME.
Did you ever get a spinal MRI scan? For ME/CFS patients who have suffered a physical trauma such as a car crash, perhaps some in this subset might have cervical spinal stenosis.


Another spinal condition that can arise from physical trauma and lead to ME/CFS-like symptoms is syringomyelia.

Syringomyelia is a fluid-filled cyst which appears within the spinal cord, and compresses the spinal nerves, just as a spinal stenosis does.
 

lauluce

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my ME symptoms worsen perhaps 50% after having a lumbar disk herniation. Casually, this last week I seem to have got a new herniation in another vertebrae, again in the lumbar zone, which leads me to think that there is some underlying disease in all my disks and that maybe this has some relation to my ME (I fulfil ccc criteria and have positive 48hs cpet). Actially, before my first herniation, I didn't even have PEM, which I noe clearly have! Any toughs about this? I'm seriosly thinking about visiting a spine speciallist
 

xrayspex

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@xrayspex You might be interested in this thread.
@Alexi

thanks this is really interesting to me that this is taking off more now as far as public attention

I consulted Dan Heffez one of the first researchers to highlight this issue, along with Chiari malformation, in the late 90s and it was in the news a bit back then but at that time my impression was the press and other neurosurgeons tried to discredit it and also some CFS folk's had some negative reactions to surgery even tho they met criteria for the procedures.

Back in 99 Dr Heffez had people get cat scans with with their neck in extension as he had learned that sometimes a regular film lying straight wouldn't show the narrowing so doctors would erroneously conclude there wasn't a problem. The main way I have mitigated problems with having the stenosis without surgery has been to try to keep my neck straight like get up from sitting frequently and lie down breaks and that is why those of us with these problems feel better lying down. I am sure if I wouldn't have been a militant about pacing and lying down throughout day and avoiding rambunctious exerise I would have gotten worse quicker and be worse now. But now I am regretting that I didn't get thee surgery because maybe I would have had more of a life---it didn't really click for me that it causes neuroinflammation chronically and that can cause other problems although I suspected---I feel like that is being stated more clearly by folks now. What made that click for me though was talking to a frequency specific microcurrent (fsm) expert earlier this year who said that fsm would likely be limited without surgery because of the structural problem and the chemicals continuing to be released by problematic discs.

one other thing about the mri scans though---most doctors may not know to order them with slight extension under your neck, but they can do that with a towel rolled up. Although I will not do that again because it worsened my stenosis symptoms--being in extension has bothered me a lot since onset of this in the 90s. So be careful because you might irritate things more and then feel permanently worse--I did after putting neck in pretty extreme extension for duration of a cat scan back then. It eventually calmed down but was an awful few months and then permanently at bit worse base line since then. Extension is like when you look up at sky etc that does not work for me!
But if the problem is obvious enough it will show up with a regular MRI scan, mine does, and then if there are abnormal neurological exam like positive hoffman or babinski and along with your history they can figure it out....if they want to. I think there can be discrimination once you have fibro or cfs diagnosis in your chart.

Here is more info from site of guy who started this original research

http://www.wichiaricenter.org/Chiari_Malformation

you can also look for rheumatogist Andrew Holman's research out of Seattle as he looked at this too for 10 years
 
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lauluce

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I'm starting to remember that back when I was 13, at the beginning of my disease, some doctor told me by loking at an x-ray of my neck that my vertebrae were closer to each other than thy should... I used to have severe neck stifeness from time to time back then... Having read this, I'll ask the spine specialist I'm going to visit for my lumbar disk erniations to check my neck too. I wonder if he'll find something now, 20 years later?
 

PatJ

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interrupting or impeding nerve signals. So possibly those impeded nerve signals can cause ME/CFS
I had an episode of Transverse Myelitis in 1991. Treatment was basically pumping me full of corticosteroids and then rehab for months. It wasn't until 2003 that I had my first obvious symptoms of ME during a time of high stress. I wonder if the spinal cord injury (and corticosteroids?) made me more susceptible to developing ME, or if I developed it in 1991 but it took until 2003 for conditions in my body to worsen enough to start showing obvious symptoms.