Anyone else with a Cervical Stenosis?

[Yuno]

There have been some threads on this paper https://www.ncbi.nlm.nih.gov/pubmed/29391028. which describes the global improvement of me/cfs symptoms after the removal of a cervial stenosis in three women und hypothesizes that at least in these cases the stenosis could be causative of ME/CFS symptoms. Jose Montoya also mentioned these cases in his latest interview.

I also have severe ME/CFS and a cervical stenosis and am wondering: Cervical Stenosis is not such a rare condition, there should be many more patients with severe ME/CFS and orthostatic disfunction and a cervical stenosis.
Has anybody else with these conditions undergone surgical treatment and with what outcome?

 

[Hip]

Jose Montoya also mentioned these cases in his latest interview.

Do you know the approximate timecode when he talks about cervical stenosis?



Interestingly there are several spinal conditions that can cause ME/CFS-like symptoms:

Cervical spinal stenosis — where the spinal canal becomes too narrow, which can be caused by physical trauma to the spine (or just general wear and tear).

Syringomyelia — is a fluid-filled cyst which appears within the spinal cord, and compresses the spinal nerves.

Chiari malformation — where brain tissue extends into the spinal canal, due to a skull which is too small or misshapen, pressing on the brain and forcing it downward. Chiari malformation this will not show up on a standard brain MRI. You need an upright, flexion-extension MRI. Ref: 1 Chiari malformation is sometimes found in Ehlers-Danlos syndrome.

Craniocervical instability — this is a structural instability of the bones that join the head and neck; a thread on that here.

Tethered cord — where spinal cord is "stuck" to a structure within the spine, such as dura, scar tissue from a previous operation, a bony spicule or even a tumor. Ref: 1

 

[Gingergrrl]

Cervical spinal stenosis — where the spinal canal becomes too narrow, which can be caused by physical trauma to the spine (or just general wear and tear).

That's interesting and I was officially diagnosed with cervical stenosis of my neck on an MRI back in 2010 (following two car accidents and other issues) and now also have a diagnosis of cervical radiculopathy.

But I did not get severe Mono from EBV until 2012, and then a second virus in Jan 2013, which led to a post-viral syndrome with POTS/Dysautonomia, then muscle and breathing weakness, etc, which progressively worsened until I had severe MCAS with anaphylaxis in 2015.

It was a pure downward spiral that led to several autoimmune diagnoses until I began treatment in 2016. But I never viewed the cervical stenosis and neck pain as related to my overall illness vs. as a totally separate issue. Are they always connected or can they be separate?

 

[Hip]

I was officially diagnosed with cervical stenosis of my neck on an MRI back in 2010

Was any treatment for this recommended to you at that time?

 

[Gingergrrl]

Was any treatment for this recommended to you at that time?

I did some PT for my neck in 2010 (traction, ultrasound, massage, chiropractor, etc) but I did not have POTS or the muscle and breathing weakness yet and was not sick overall yet. I was still working, walking, driving, and did not use wheelchair yet (at that time).

The PT was actually more for my arm which had been injured by Levaquin and the MRI found the cervical stenosis of my neck as part of imaging to assess the damage that had been done to my arm from the Levaquin. I had so many "triggers" leading up to my illness that I doubt I will ever be able to separate them all.

The car accident in which my car was hit and flipped upside down causing the second neck injury was in 2006, the Levaquin arm injury and FTS was in 2010, the severe Mono/EBV in 2012, and then the toxic mold exposure started at end of 2012 to mid 2015.

 

[ChrisD]

I've seen this spoken about a lot on this forum, since having a spinal X-ray at my Chiropractor and being informed that I have a slight Cervical Stenosis myself. I notice that in my worse periods when I am 'inflamed' or 'flared up' that stiffness around this area becomes worse and it feels as if the stenosis is getting worse as my neck bends forwards more.

The biggest question for me was whether this was cause or effect? whether inflammation from a possible pathogen cause this behaviour in the spine.

Here are all the other threads on it:

https://forums.phoenixrising.me/ind...gery-2018-peter-rowe.57544/page-2#post-957380
https://forums.phoenixrising.me/ind...s-and-orthostatic-intolerance-symptoms.47853/
https://forums.phoenixrising.me/ind...ation-or-cervical-stenosis.19305/#post-295894
https://forums.phoenixrising.me/index.php?threads/anyone-else-have-a-spine-curvature.25852/
https://forums.phoenixrising.me/index.php?threads/cervical-spine-injection.42278/

 

[Yuno]

Do you know the approximate timecode when he talks about cervical stenosis?

Its at the very end at 27:34. To be honest he doesn't really talk in depth about it or about the putative mechanisms by which a stenosis could cause ME. He more or less just mentions it, but it sounds a bit like: if you have a stenosis and you can see the decompression of the myelon on the MRI scan, you stand a good chance that it may be causing your ME.

It was a pure downward spiral that led to several autoimmune diagnoses until I began treatment in 2016. But I never viewed the cervical stenosis and neck pain as related to my overall illness vs. as a totally separate issue. Are they always connected or can they be separate?

I have no idea, but I would love to know. I just know that one of the three women described in the paper definitely got sick with ME after an infection, so stenosis can only be a co factor or maybe an underlying condition which then prevents the body from healing and thus perpetuating the disease .

I've seen this spoken about a lot on this forum, since having a spinal X-ray at my Chiropractor and being informed that I have a slight Cervical Stenosis myself. I notice that in my worse periods when I am 'inflamed' or 'flared up' that stiffness around this area becomes worse and it feels as if the stenosis is getting worse as my neck bends forwards more.

The biggest question for me was whether this was cause or effect? whether inflammation from a possible pathogen cause this behaviour in the spine.

I also was seriously wondering about whether a pathogen or an inflammatory process could actually in someway be causative of a stenosis, because I had two MRI's done, one in 2017 when I was only mildly affected by ME and one in 2018 when I was already moderately severe. Interestingly enough the MRI of 2017 already shows some light dents in the spinal cord, but no real stenosis, meaning that the stenosis deteriorated in the same time span, as did my ME symptoms. But then my ME definitely got worse due to overexertion, if I hadn't overdone it (without knowing) I would not be as sick as I am, of that I am sure.
So, if there was to be a link, its either that the overexertion and the resulting inflammatory or whatever process brought about a further deterioration of the stenosis or that I crashed so badly and did not recover to the same baseline of before, because of the stenosis. It remains all a mystery....
I know that Herpes Virus can cause disc degeneration in some way, but I dont know exactly to what extent.
https://www.researchgate.net/public...ebral_disc_degeneration_A_CAUSAL_RELATIONSHIP

For those who are interested I uploaded two papers of Dr. Dan Heffez, which, as Peter Rowe told me in a mail, lay the groundwork of his paper on the stenosis connection and might add to the overall picture.

 

[Yuno]

Sorry, I didn't get that quote bit right, so here another try:

I've seen this spoken about a lot on this forum, since having a spinal X-ray at my Chiropractor and being informed that I have a slight Cervical Stenosis myself. I notice that in my worse periods when I am 'inflamed' or 'flared up' that stiffness around this area becomes worse and it feels as if the stenosis is getting worse as my neck bends forwards more.

The biggest question for me was whether this was cause or effect? whether inflammation from a possible pathogen cause this behaviour in the spine.

I also was seriously wondering about whether a pathogen or an inflammatory process could actually in someway be causative of a stenosis, because I had two MRI's done, one in 2017 when I was only mildly affected by ME and one in 2018 when I was already moderately severe. Interestingly enough the MRI of 2017 already shows some light dents in the spinal cord, but no real stenosis, meaning that the stenosis deteriorated in the same time span, as did my ME symptoms. But then my ME definitely got worse due to overexertion, if I hadn't overdone it (without knowing) I would not be as sick as I am, of that I am sure.
So, if there was to be a link, its either that the overexertion and the resulting inflammatory or whatever process brought about a further deterioration of the stenosis or that I crashed so badly and did not recover to the same baseline of before, because of the stenosis. It remains all a mystery....
I know that Herpes Virus can cause disc degeneration in some way, but I dont know exactly to what extent.
https://www.researchgate.net/public...ebral_disc_degeneration_A_CAUSAL_RELATIONSHIP

For those who are interested I uploaded two papers of Dr. Dan Heffez, which, as Peter Rowe told me in a mail, lay the groundwork of his paper on the stenosis connection and might add to the overall picture.

 

[xrayspex]

Yuno
thanks for compiling a lot of the threads on Stenosis
I also put some links regarding stenosis in one of the chiari threads recently--I consulted with Dr Heffez twice over 16 years, the last time 2015, also saw Dr Lao in WA who was familiar with Holman's research--Holman followed up on Heffez research

the links are in my post at bottom of this thread's page
https://forums.phoenixrising.me/ind...-cause-of-your-cfs.56908/page-15#post-1003014

I have decided for now not to pursue surgery --for number of reasons--mostly fear because I do not tolerate anesthesia well and I have had compression for like 30 years and better results seem to come when intervention more timely is my understanding

I have had some luck with frequency specific microcurrent altho its a drag that stenosis is one of the few conditions that causes more pain, temporarily as side effect but its a pretty stunningly helpful modality for a lot of people (talk to Tom A on "friends of frequency specific microcurrent" facebook page)
I want to try PEMF
and am also wondering about stem cells...............

Sorry, I didn't get that quote bit right, so here another try:




I also was seriously wondering about whether a pathogen or an inflammatory process could actually in someway be causative of a stenosis, because I had two MRI's done, one in 2017 when I was only mildly affected by ME and one in 2018 when I was already moderately severe. Interestingly enough the MRI of 2017 already shows some light dents in the spinal cord, but no real stenosis, meaning that the stenosis deteriorated in the same time span, as did my ME symptoms. But then my ME definitely got worse due to overexertion, if I hadn't overdone it (without knowing) I would not be as sick as I am, of that I am sure.
So, if there was to be a link, its either that the overexertion and the resulting inflammatory or whatever process brought about a further deterioration of the stenosis or that I crashed so badly and did not recover to the same baseline of before, because of the stenosis. It remains all a mystery....
I know that Herpes Virus can cause disc degeneration in some way, but I dont know exactly to what extent.
https://www.researchgate.net/public...ebral_disc_degeneration_A_CAUSAL_RELATIONSHIP

For those who are interested I uploaded two papers of Dr. Dan Heffez, which, as Peter Rowe told me in a mail, lay the groundwork of his paper on the stenosis connection and might add to the overall picture.

 

[Gingergrrl]

I have no idea, but I would love to know. I just know that one of the three women described in the paper definitely got sick with ME after an infection, so stenosis can only be a co factor or maybe an underlying condition which then prevents the body from healing and thus perpetuating the disease.

@Yuno I also have no idea but would love to know! I had the stenosis (in my neck) on an MRI at least two years prior to getting severe Mono from EBV virus but never felt that there was any connection whatsoever between the two but all of this new research makes me wonder!

I absolutely without hesitation feel that EBV played a major role in me developing severe autoimmunity including Autoimmune POTS, MCAS, Hashimoto's Disease, and the most major part of my illness that was first diagnosed as ME/CFS (2013-2016) but later switched to probable LEMS (around 2017). The cervical stenosis still seems like a separate issue to me (but maybe it isn't)?