Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[JenB]

@JenB Out of curiosity, how many patients was this in total? I am assuming that some may have had more than 1 diagnosis.

Yeah, that I can’t say. At least 64

 

[pattismith]

I don't want to argue either, don't have the time nor the energy to do it, I just have some energy to fight to improve my condition… This is all I am interested in!

Neurology is certainly the medical field where there is the bigger to learn. Where are the neurologists that should invest research resources in ME, Fibro, EDS?
The few neurosurgeons that found a way to improve the future of severe patients with cervical hypermobility should get more attention from neurologists (rheumatologists as well)..


Stretch-associated Injury in Cervical Spondylotic Myelopathy: New Concept and Review
Fraser C. Henderson, M.D.1
Department of Neurosurgery, Georgetown University, Washington, District of Columbia

01 May 2005
Abstract
THE SIMPLE PATHOANATOMIC
concept that a narrowed spinal canal causes compression of the enclosed cord, leading to local tissue ischemia, injury, and neurological impairment, fails to explain the entire spectrum of clinical findings observed in cervical spondylotic myelopathy.
A growing body of evidence indicates that spondylotic narrowing of the spinal canal and abnormal or excessive motion of the cervical spine results in increased strain and shear forces that cause localized axonal injury within the spinal cord.

During normal motion, significant axial strains occur in the cervical spinal cord.
At the cervicothoracic junction, where flexion is greatest, the spinal cord stretches 24% of its length. This causes local spinal cord strain. In the presence of pathological displacement, strain can exceed the material properties of the spinal cord and cause transient or permanent neurological injury.

Stretch-associated injury is now widely accepted as the principal etiological factor of myelopathy in experimental models of neural injury, tethered cord syndrome, and diffuse axonal injury.
Axonal injury reproducibly occurs at sites of maximal tensile loading in a well-defined sequence of intracellular events: myelin stretch injury, altered axolemmal permeability, calcium entry, cytoskeletal collapse, compaction of neurofilaments and microtubules, disruption of anterograde axonal transport, accumulation of organelles, axon retraction bulb formation, and secondary axotomy.
Stretch and shear forces generated within the spinal cord seem to be important factors in the pathogenesis of cervical spondylotic myelopathy.

 

[Cherry]

So, has anyone had any success getting evaluated for CCI, chairi etc and having the screening paid for by medicare or medicaid? I am on medicaid in Massachusetts and will be turning 65 in a few years. I am on the low end of moderate (mostly bed bound but able to make the occasional grocery run, etc) My main symptoms are fatigue and PEM, with less obvious disautonomia. (OI due to NMH). Would it make sense to get a hold of the supine MRI I had done a few years ago and find someone to read it? Or post it here? I am guessing that if I could get the appropriate imaging and a diagnosis that indicated a need for surgery, then medicaid would pay. Is this a reasonable assumption? My personal finances are extremely limited, but my sister helps me out occasionally.

 

[Inara]

Oh i thought the cervical Junction is visible at cervical Spine Scan. Is this not the Case?

I thought so, too, but they count the junction to the head. It brings more money in.

 

[chger]

I thought so, too, but they count the junction to the head. It brings more money in.

Is the Junction really not visible on cervical Spine scan? Or they cut it out?

 

[Inara]

Is the Junction really not visible on cervical Spine scan? Or they cut it out?

I haven't tried it. If they say the cervical junction counts to the head, and you need the cervical junction, you will have to pay for the head, too. It's no use if you see the cervical junction only in part. Plus, if I remember correctly Dr. Gilete needs the cervical spine, too, else one could only make the head with junction.

 

[Daffodil]

@jeff_w i read only a small portion of your scientific post but i wanted to add that people with irritable bowl disorder (who i suppose would presumably have leaky gut) have a greater likelihood of having degenerative spinal conditions. i will try to find the paper on this.

and a large portion of cfs/me patients had IBS pre-dating the illness, right?

 

[frozenborderline]

but i often get scolded for bringing up the idea of foreign surgeons here. this is wrong. we must face the fact that thousands or millions cannot have surgery in spain or the USA. and many are severely ill. so we must be able to discuss this issue freely

I don’t see anyone scolding. There’s a difference between people saying they won’t endorse the idea, which could be very risky, and scolding. I think that stem cell results could be very dramatic if one isn’t continually exposed to whatever caused the cci in the first place—the root cause has to be addressed. I wish I could do stem cells and that’s it was covered by insurance. I think that it is a good start

 

[Scotty81]

Hi @jeff_w I see on page 93 of this thread that you posted a unifying hypothesis on how the mechanical and metabolic bases of CFS can both be correct. I'll definitely have to digest that; I appreciate you posting it. My question to this thread concerns CCI and autoimmune illnesses. I have skimmed the first 90 pages or so of this thread, but don't recall anyone mentioning the comorbid condition of autoimmune disease.

My particular role is that I am caregiver for my 26-year old daughter who has been diagnosed with CFS, POTS, mast cell activation disorder (MCAD) and Sjogren's syndrome. She also has neck issues which have gotten worse from when they started about 10 years ago. Also, although she doesn't qualify for a diagnosis of hEDS, she is on the hypermobility spectrum. We're in the process of getting the upright MRI's and evaluations that have been mentioned on this thread.

So, if CCI were causing my daughter chronic symptoms, I understand the part about how brain stem / cervical compression could cause the autonomic nervous system (ANS) to be wonky and thereby "cause" POTS. I also understand (or at least think I do) that since the mast cells are intertwined with the ANS, that the compression could torque off the mast cells and "cause" MCAD too, as it did in @JenB 's case.

What I don't know is how or if the above compression can also cause an autoimmune condition. So, I was wondering if your theory (which I haven't read in detail yet) explains that as well. I wonder if the excited mast cells might somehow cause the B cells of the immune system to start attacking the body, thereby causing an autoimmune condition. Or, if my daughter has some collagen breakdown (which is just a guess), that these cells are seen as foreigners to the body's immune system, and that's how an autoimmune condition starts.

I also realize that one could develop an autoimmune condition indirectly from a leaky gut too. And, I know that one can have 2 distinct causes (e.g. CCI AND autoimmune) of chronic conditions; it doesn't have to be just one.

So, I wondered if you or anyone else reading this thread thinks it makes sense that CCI can also cause an autoimmune condition, and if so, whether any non-CCI related treatments have worked for you. If CCI really is causing an autoimmune condition like Sjogren's, then it would make sense that treatments that don't address the underling CCI won't help. At least in my daughter's case, nothing has helped her Sjogren's symptoms thus far.

I realize I asked a lot of questions. Thanks in advance,

Scotty81

 

[Bowser]

@Daffodil Were you able to find out more about Dr Atul Goel and how experienced he his in this type of diagnosis and surgery?

I'm very interested in visiting him as I live in India. However, he's still over 1000km away from me, so I want to put in a bit more research before going for a visit.

 

[StarChild56]

invasive traction is expensive though...thousands of dollars

there was someone on this board and I think on this thread much earlier on who said they had surgery on neck with no improvement in CFS symptoms. maybe some things improved like headaches or something, I cannot remember. anyway. dr. GIlete's office told me that there are some who do not improve after surgery

If you are not referring to me, my apologies...

If you are referring to me...
I had major improvement in many areas, including in severe/chronic/disabling migraines (sometimes 30 in a month, not responding well to meds).
I had many more improvements but I still felt fatigue. The horrific, crushing malaise is gone along with some other very important things.
I will post an update soon which will clear this up. I have been meaning to and haven't - my apologies. It has been a long time.

 

[Hip]

@StarChild56 would you consider answering my CCI survey. The end of the survey page contains questions about the results of surgery, and asks which symptoms specifically improved as a result of surgery.

 

[StarChild56]

@StarChild56 would you consider answering my CCI survey. The end of the survey page contains questions about the results of surgery, and asks which symptoms specifically improved as a result of surgery.

I tagged you in my update to ask if I can - because I am still not 100% whether or not I had AAI.

 

[Daffodil]

@Daffodil Were you able to find out more about Dr Atul Goel and how experienced he his in this type of diagnosis and surgery?

I'm very interested in visiting him as I live in India. However, he's still over 1000km away from me, so I want to put in a bit more research before going for a visit.

I have asked someone who sees dr. B to ask about the indian and Chinese doctors and if one can see dr. B and have him confer with the Asian doctors. I am waiting for more info. Unfortunately, I do not know how to obtain more info about these doctors. I asked dr G's office but I was told they do not know about them. I am at a loss as to what to do if the stem cells don't work, and my hopes are very low.

 

[Daffodil]

i have some weird sounds going in my neck when i turn my head. anyone else?

 

[pattismith]

i have some weird sounds going in my neck when i turn my head. anyone else?

yes, it's like a kind of gearing turning as I move. Nobody else can ear it, it's too soft

 

[Daffodil]

yes, it's like a kind of gearing turning as I move. Nobody else can ear it, it's too soft

lol yes! i described it before as a creaking but gear turning is more accurate

 

[Daffodil]

i have noticed a few people in other groups, some with CFS and some with just cervical instability, claim that their issues started after mold exposure. so maybe we have weaker/loose ligaments or IBS which causes leaky gut which may cause weak ligaments (I read there is a correlation between leaky gut and disc degeneration). So then we get mold exposure or mono or chicken pox or whatever, which causes a lot of inflammation and this further damages the ligaments to the point we get cranial settling or something.....?

 

[valentinelynx]

i have some weird sounds going in my neck when i turn my head. anyone else?

Ga, my neck is super-crunchy! I noticed this a few years ago but didn't think much of it. The comparison to a gear, or ratchety sound is apt. Any movement, up, down, forward-back or especially around in circles makes quite a racket in my head. It actually sounds like it's coming from the top of the neck where it meets the skull (i.e. the craniocervical junction); I wonder if it really is.

 

[sb4]

@valentinelynx I get the neck crunchiness too. Wonder how common it is in normal population.