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Hi looking for Spinal Stenosis studies/cases and their relation to ME/CFS.

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Spinal stenosis
Hi I’m looking for credible scientific studies on spinal issues like spinal stenosis and their relation to ME/CFS.

I recently had an MRI done on my neck because of tingling and numbness in my hands and feet.
That sensation started 7 years ago at age 40.

The MRI found a narrowing down to 7.9mm from a protruding disc inward towards the spinal cord. And at another disc the narrowing was down to 9.7mm

I’ve a slight hump in my upper back too first noticed in my 20’s, although I was 17 when I first came down with ME/CFS (so have had it 30 years).

The ME/CFS started from severe to moderate to mild, then worsened in 2016 to severe again.

Anyway the MRI shows there’s disc protrusion from C-3 to C-7.

From an above angle (sorry I don’t have that image) I could see the CSF was still surrounding the circumference of the spinal cord, although to me it looked thin in places.

The neurosurgeon said he didn’t think it was spinal stenosis yet as he can still see the spinal fluid.

So he said an operation wasn’t yet needed, although he would operate if I could get a second opinion from a neurologist.

So I need some good studies to convince them both that there’s is a relationship between spinal stenosis and ME/CFS.

Does anyone have any studies on this subject?

I’ve seen Dr Rowe’s 3 patient cases. And a larger study on fibromyalgia and similar spinal issues .

Also has anyone had this operation? And how risky is it?

Thank you
 

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rel8ted

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I have issues C4-6. Having ACDF surgery very soon. Have been told it’s no big deal & am sure it isn’t compared to a CCI surgery. I have severe symptoms that the neurosurgeon is attributing to cervical myelopathy. I have cervical instability & hEDS, so when I flex & extend, my spinal cord is being “pinched.”
Have had symptoms for over 2 decades that have gotten progressively worse. Hoping to end the progression, maybe regain some quality of life. My surgeon was very clear that he believes fibro is a trash can dx & that the reason I found the root cause is bc I did my homework.
 
Messages
19
Likes
28
Location
New Zealand
I have issues C4-6. Having ACDF surgery very soon. Have been told it’s no big deal & am sure it isn’t compared to a CCI surgery. I have severe symptoms that the neurosurgeon is attributing to cervical myelopathy. I have cervical instability & hEDS, so when I flex & extend, my spinal cord is being “pinched.”
Have had symptoms for over 2 decades that have gotten progressively worse. Hoping to end the progression, maybe regain some quality of life. My surgeon was very clear that he believes fibro is a trash can dx & that the reason I found the root cause is bc I did my homework.
Interesting he said that about Fibro, as I found this interesting article on it and spinal issues. Big study size too, n=270 patients. Plus heaps of citations to other studies. I’m yet to find any linked to ME/CFS

‘Clinical evidence for cervical myelopathy due to Chiari malformation and spinal stenosis in a non-randomized group of patients with the diagnosis of fibromyalgia’

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3476600/
 
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His response was in response to me asking what he thought of that study.
yeah after reading (parts of) that study it does have me wondering if there’s mass misdiagnosis going on with fibro. And possibly a subgroup of ME/CFS.

I was surprised Jennifer Brea had spinal issues as her symptoms were identical to ME/CFS.

did you show the neurosurgeon any other studies?
 

ebethc

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I have issues C4-6. Having ACDF surgery very soon. Have been told it’s no big deal & am sure it isn’t compared to a CCI surgery. I have severe symptoms that the neurosurgeon is attributing to cervical myelopathy. I have cervical instability & hEDS, so when I flex & extend, my spinal cord is being “pinched.”
what are the symptoms associated w myelopathy?

I just had an MRI, which concluded C5-C7 problems, bulging discs, stenosis and a preliminary dx of myelopathy; seeing a neurosurgeon soon for a consult... no EDS... however, def some sort of soft tissue problem... really, the opposite of EDS - lots of stiffness. Painful joints (but no joint problems, which makes me think it's soft tissue, especially since I have so much stiffness anyway), fatigue, brain fog, GI issues, low functioning immune system. SUPER sensitive to weather (damp, and low pressure)... Particulate matter wipes me out, but no IgE problems, so my immunologist thinks its triggering a neuro reaction..

Have had symptoms for over 2 decades that have gotten progressively worse. Hoping to end the progression, maybe regain some quality of life. My surgeon was very clear that he believes fibro is a trash can dx & that the reason I found the root cause is bc I did my homework.
why is fibro a trashcan dx? just curious...
 

Hip

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This study on 3 ME/CFS patients found improvement after cervical spinal stenosis surgery.

Cervical spinal stenosis is not uncommon in the general population:
It has been estimated that cervical stenosis was present in 4.9% of the adult population, 6.8% of the population fifty years of age or older, and 9% of the population seventy years of age or older.
Source: here
 

ebethc

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3 ME/CFS patients found improvement after cervical spinal stenosis surgery.
thanks!

Cervical spinal stenosis is not uncommon in the general population:
all those %'s are single digits, so I don't understand how it can be "not uncommon"... I read this in the study and didn't understand..

also..the %'s aren't segmented by gender, which would be more meaningful since it's more common in women...
 

Hip

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all those %'s are single digits, so I don't understand how it can be "not uncommon".
I am not sure I understand your question. 5% of the adult population have cervical spinal stenosis, so that's fairly common for a medical condition (although I think some cases will be asymptomatic). If we compare to ME/CFS, it's only 0.2% of the population who have that.
 

rel8ted

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what are the symptoms associated w myelopathy?
from Google:

People may experience:
Pain areas: in the back or neck
Muscular: abnormality walking, instability, lack of coordination, muscle weakness, problems with coordination, rhythmic muscle spasm, stiff muscles, loss of muscle, or overactive reflexes
Sensory: reduced sensation of touch or uncomfortable tingling and burning


Obviously, this list is not exhaustive. Do some digging if you think this is the right path.
 
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rel8ted

Senior Member
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Location
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what are the symptoms associated w myelopathy?

I just had an MRI, which concluded C5-C7 problems, bulging discs, stenosis and a preliminary dx of myelopathy; seeing a neurosurgeon soon for a consult... no EDS... however, def some sort of soft tissue problem... really, the opposite of EDS - lots of stiffness. Painful joints (but no joint problems, which makes me think it's soft tissue, especially since I have so much stiffness anyway), fatigue, brain fog, GI issues, low functioning immune system. SUPER sensitive to weather (damp, and low pressure)... Particulate matter wipes me out, but no IgE problems, so my immunologist thinks its triggering a neuro reaction..



why is fibro a trashcan dx? just curious...
In med school, they are taught to find a dx. If you have a complicated patient, it’s a long, drawn out complicated process. If you make a dx, you can pass said patient off to a specialist. MY words, NOT his!

i saw 2 rhuematologists, 4 neurosurgeon, and received dx of seronegative RA, Ocular MG, fibro, chronic migraine. The rheumatologist who dx me with zero what I’ve RA & put me on some scary meds to try to treat it told me after my hEDS dx that she suspected it all along, but it’s no big deal so she didn’t tell me. Each doc put their dx stamp on me & pushes me off. It’s been a wild 28 years!