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

[xrayspex]

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 .....

 

[MEPatient345]

This is for lumbar spinal stenosis (lower back), not cervical.. But sharing in case it could also be a treatment to try for people w spinal issues. I am just about to start HBOT and am also wondering if my spine is root of my problems (significant scolioisis) and cam across this in a hbot group:
https://www.researchgate.net/public...-_A_prospective_open-label_case_control_study

 

[PeeWee]

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 ...

 

[Zoidberg_DC]

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.

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

 

[Marky90]

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

 

[perrier]

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?
-------------------

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.

 

[Neunistiva]

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.

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.

 

[perrier]

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.

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.'

 

[scisolver]

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.

 

[scisolver]

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

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.

 

[Marky90]

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.

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

 

[scisolver]

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

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.

 

[Tella]

Does anyone get pain in the neck ONLY when upright, sitting up or standing? It happens to me when I’m upright for a few mins not sure if it’s pots, cci, cfs??
Also do u know if it’s safe to do any neck stretching if u have cci??

 

[keepontruckin]

If spinal problems can cause cfs you might expect people with scoliosis to have higher incidents
Here is a family that did
https://www.healthrising.org/forums/threads/scoliosis-not-always-an-incidental-finding.2557/

 

[MartinK]

@keepontruckin interesting...I have hyperkhyposis, I also try to find out if there can be context.
but I am not sure if these "mechanical" problems can cause feelings of huge inflammation in body (and i have this feelings of inflammed muscles)
hope for more investigations!

 

[SlamDancin]

I’m pretty sure my hyperkyphosis and scoliosis, etc are caused by weakness in my joints. I have some form of undiagnosed hyper mobile joints as of right now. I believe it’s more of a hypoxic/ischemic inflammation than your typical scoliosis inflammation. Dr Moreau, an idiopathic scoliosis expert himself, compared a scoliosis cohort to his ME cohort in the impedance test and the scoliosis wasn’t enough to cause reliable impedance unlike the ME group. This is why I think scoliosis is more likely a symptom as well.

 

[Marky90]

Does anyone get pain in the neck ONLY when upright, sitting up or standing? It happens to me when I’m upright for a few mins not sure if it’s pots, cci, cfs??
Also do u know if it’s safe to do any neck stretching if u have cci??

I do, it can get really tight

 

[Tella]

I do, it can get really tight

Aww so sorry! Do u get worse if u try to stretch your neck? How do u manage daily? I’m so tired being flat in bed, if only I could sit up, that would be amazing!

 

[Marky90]

Aww so sorry! Do u get worse if u try to stretch your neck? How do u manage daily? I’m so tired being flat in bed, if only I could sit up, that would be amazing!

No worries!

Not really, its more related to doing activities upright (physical or mental). It`s like I feel the nerve signals trying to get through my brain stem;P If I drink alcohol it goes away (which makes the nervous system work slower), so definitely something with the nervous system I think!

Sorry to hear ur bedbound at the moment,
Sending good wishes