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Cervical Issues not Chiari

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powertool4

Messages
86
Was this study ever posted here on the forums? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5796598/

(Very recent, published online 2018)

I know there's a big issue with Chiari and cervical instability but how many people have stenosis, disc degeneration, herniation, etc?

3 people in that study were in severe ME shape and got their life basically back by doing neck surgery and sometimes they didn't show Hoffman sign, etc. and often got overlooked. They did not have chiari.

I ask because after more than 10 years I am fairly convinced my neck has a large part of my severe ME.

I always gave it no attention because you don't read about ME or autonomic issues with cervical compression, only pain. I don't have much nerve pain but lots of tingling, jolts, numbness, muscular atrophy in addition to severe ME and fatigue symptoms.

According to newer recounts by members and studies such as the one above it looks like cervical compression can cause problems not just pain.

It may not be the answer for all but probably for some.

2004 - Had neurological tingling in faces and hands when wearing football helmet in HS. Doctor did a basic MRI and said I'll have more pain as an adult. Showed a 3mm disc hernation, ostephyte but wasn't any more detailed than that. At the time I was young so never looked into it.

2006 - Neurological issues get worse. Hands are starting to get weak, facial muscles are starting to also get weak. Quads/legs are starting to get weak as well. But weak here would be normal on a test. I was able to walk so any physical exam would show normal. But as a weightlifter I could tell something was wrong. and my recovery was very bad.

2007 - Abnormal and chronic levels of fatigue are starting to affect my studies and life. Start having problems with Gut, Autonomic nervous system, sleep. Weight loss of 20 lbs.

2009 - Bedridden after my first crash. Every system affected. It was a long hard road this one.
2010 - Xray of cervical neck shows complete loss of curvative, degeneration in almost all vertebrae between C2-C6.

Haven't had a recent MRI I never even thought it would be possible that there would be a mechanical reason for my problems as everything you read about is limited to pain OR severe problems like paralysis. Now I know there are people with compression that do have a lot of problems unrelated to just pain.


When I am able, I plan on going to my doctor to write me an RX for scans and I do not want to do it more than once. My friend who's a neuroradiologist has recommended I get a 3tesla scan as they are more detailed. Probably get a full spine MRI.

Are most of you going directly to the neurosurgeons or are you getting a scan first with a local doctor? I want to make sure I get all the scans to cover the bases

My friend said that the radiologist and imaging center is actually who writes the recommendations so you need a good radiologist to begin with.
 
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borko2100

Senior Member
Messages
160
What triggered your first crash? Any athletic activity that could involve the spine by any chance? There is some evidence that spinal issues can cause fibro and ME / CFS. Not many studies (the one you posted + 1 more AFAIK) yet, but in my opinion it can definately be a cause for lot's of people.

It is no surpise that spinal issues can cause neurological symptoms, what is surprising is that in some people, according to the few studies we have, it can also cause fatigue. How this happens is a mystery, but should be researched further.
 
pattismith

pattismith

Senior Member
Messages
3,950
@powertool4 , obviously your symptoms are consistent with a spinal stenosis, and I'm sure you will find a doc to look at it. Numbness and tingling are usually sign they pay attention to.

I agree neck is the root of ME/CFS/Fibro for a (big) subset of patients.

I had neck trauma as a teen, then coccyx trauma at 35, and six months later the worst crash ever;

Doc are able to diagnose pretty well spinal stenosis after 50 years old, when symptoms are serious and imaging obvious, but they seem to miss the early stages when symptoms lack specificity and objectivity.

My neck pain started only some years after my coccyx trauma, but I was so disappointed by docs at that time, that I talked about it to a doc only ten years after! And when I did, the rhumato only made an x ray and told me I have cervical arthrosis, and that there was nothing to do...

Now, two years after, I feel more tingling, so I consider finding a neurosurgeon to look more seriously at my spine.

I think one reason we are overlooked is that we go to the doc with non specific subjective symptoms like headache, weakness, heavy legs and arms, pains, and the second reason is that the type of spinal stenosis we have may differ from the ones they are use to see.
 
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powertool4

Messages
86
borko2100 said:
What triggered your first crash? Any athletic activity that could involve the spine by any chance? There is some evidence that spinal issues can cause fibro and ME / CFS. Not many studies (the one you posted + 1 more AFAIK) yet, but in my opinion it can definately be a cause for lot's of people.

It is no surpise that spinal issues can cause neurological symptoms, what is surprising is that in some people, according to the few studies we have, it can also cause fatigue. How this happens is a mystery, but should be researched further.
Click to expand...

It was triggered by simply over exerting. I've always been into Athletics and when I would feel fatigued I thought I just needed to push harder and "wake" my nervous system up.

Well you technically can... For a limited time. But once you're depleted you crash hard. Took me 6 years of being bed and house bound to partially recover from the first one.

Then I had a second crash and finally a third.

I think if you have mechanical nerve problems your body just doesn't recover properly. Add onto that the autonomic dysfunction with the gut and heart and it becomes a complex issue hard to trace down or manage.
 
Hd-x

Hd-x

Senior Member
Messages
244
several years ago I had so much neck pain that I temporary lost my hairs, the doctors just diagnosed "cervical syndrom". The neck problems worsen a lot my Fibro, after getting an unknown infect I ended bedridden and CFS was "born".
It was a hard time to get my life to some degree back, but with the time I was able to leave the bed and to do a little bit weight lifting and thus to train my neck. Doing so fixed not all but most off my neck pain, tremor, headaches, shoulder + arm pain, tingle and deafness feeling.
The neck + a weak (dysbalanced) middle trapezius muscle triggered all these problems in my case.
If you have a spinal problem, disc damage or degeneration , it could trigger imo much more things.
 
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powertool4

Messages
86
pattismith said:
@powertool4 , obviously your symptoms are consistent with a spinal stenosis, and I'm sure you will find a doc to look at it. Numbness and tingling are usually sign they pay attention to.

I agree neck is the root of ME/CFS/Fibro for a (big) subset of patients.

I had neck trauma as a teen, then coccyx trauma at 35, and six months later the worst crash ever;

Doc are able to diagnose pretty well spinal stenosis after 50 years old, when symptoms are serious and imaging obvious, but they seem to miss the early stages when symptoms lack specificity and objectivity.

My neck pain started only some years after my coccyx trauma, but I was so disappointed by docs at that time, that I talked about it to a doc only ten years after! And when I did, the rhumato only made an x ray and told me I have cervical arthrosis, and that there was nothing to do...

Now, two years after, I feel more tingling, so I consider finding a neurosurgeon to look more seriously at my spine.

I think one reason we are overlooked is that we go to the doc with non specific subjective symptoms like headache, weakness, heavy legs and arms, pains, and the second reason is that the type of spinal stenosis we have may differ from the ones they are use to see.
Click to expand...
Was the doctors opinion that cervical arthritis is asymptomatic?

Im a mma fan and there's a professional fighter named bad rutten who has a "baby" arm because of a pinched nerve in his neck. I have to believe that a nerve or multiple nerves compressed could be problematic especially in our case because we are the rarest cases.
 
pattismith

pattismith

Senior Member
Messages
3,950
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