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

JenB

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So the philadelphia collar and even the traction devices mentioned earlier in the thread, are pretty affordable and when I get paid for this piece of writing, I'll order them. I really think my parents would be weirded out by it as they are often not that supportive, but I feel the need to try something out to get relief
I’m going to need to tag @jeff_w. I realize I need to be a bit more cautious about this. Traction is a very strong clue but a collar alone isn’t. Some people will find relief just from wearing a collar (especially if you have severe cranial settling, which means the collar *is* traction) – I did – but for others, it won’t make a difference at all. Jeff, I wonder what you think is the best “at home” test? I think gentle, manual traction but you probably want someone skilled to do it for you (?).
 

Rlman

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on the BTM FB group a lady said that feeling better with traction doesn't always mean the issue is definitely CCI or AAI, there are other brain issues that improve with traction she said, in her case some ear/vestibular issues. she was wrongly diagnosed with cci she says and had unnecessary surgery. so she says its important to have imaging show those issues (CCI/AAI) for sure before proceeding with surgery, though occult tethered cord doesn't show on imaging.
 
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outdamnspot

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I was considering asking my doctor about this since some people here said headaches aren't a prerequisite. However I noticed Jeff mention he did have a sensation of his head being too heavy for his neck to support. I get migraines and severe neck tension but nothing like that. Maybe it's better not to get my hopes up and ask since it would probably be hard to convince a doctor about it
 

debored13

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Has anyone had experience with dealing with stuff like this under the supervision of doctor Susan Levine, in NYC? She's my current CFS doctor. She did ask questions about hypermobility at our appointments, so she seems to "get it". Communication is sometimes poor, though, I think she takes on more patients than she can handle (which is good for me as I got in I think just before she stoped taking new patients)
 

debored13

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Another couple of thoughts. What is the general consensus on chiropractors for issues related to this? Obviously its an issue that has specific treatments (halo/surgery) and couldn't just be cured through manipulation, but in his story, @jeff_w mentions relatives that were physical therapists being trained to pull head in a specific way to give relief. It makes me wonder if chiropractors could do something similar? I wouldn't just go to physical therapy because I don't think they understand PEM and the "no exercise" part of CFS. I know this is a controversial topic and a lot of people think that chiropractors are quacks. But aside from the weird belief system thats a part of the original chiropractic model, it seems like lots of chiropractors are skilled at manipulating spine and muslces, etc
 

debored13

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The thing that interests me a lot about the idea that a structural issue like brainstem compression is behind ME/CFS, is that while I think the metabolomics findings are robust in CFS, its still sort of unclear what the cause of the metabolic issues is and what makes them so hard to reverse. One would think that if its a matter of an impairment in cellular respiration via a given pathway or two, that someone experimenting with cofactors and substrates and things that upregulate various enzymes (thiamine, coq10, succinic acid,BCAAs, etc) would have cured themselves by now. However, what often seems to happen is that people have noted but transient relief from treatments like this,and often treatments that worked stop working. It often seems to me that I am throwing a bunch of fuel down a deep metabolic well, and that its almost a pointless endeavor to treat metabolism directly. I could imagine brainstem compression fitting into a scenario like this, because a structural problem that isn't resolved , like that, could cause profound metabolic and immune disturbances, and if you treat the metabolic and immune disturbances, you would only get transient relief, because the ultimate cause of the disturbances is so omnipresent and severe that its almost impossible to compensate for.
 

JenB

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on the BTM FB group a lady said that feeling better with traction doesn't always mean the issue is definitely CCI or AAI, there are other brain issues that improve with traction she said, in her case some ear/vestibular issues. she was wrongly diagnosed with cci she says and had unnecessary surgery. so she says its important to have imaging show those issues (CCI/AAI) for sure before proceeding with surgery, though occult tethered cord doesn't show on imaging.
This I find strange. Did her surgeon perform surgery based just on symptoms? You generally need to have imaging that confirms the diagnosis, which involves measurement of angles and/or actual distance/movement between certain structures that is abnormal.

And no, traction at home is definitely not diagnostic! We do these things because they help provide clues re: whether it’s worth the hassle of pursuing a diganosis.
 

Rlman

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This I find strange. Did her surgeon perform surgery based just on symptoms? You generally need to have imaging that confirms the diagnosis, which involves measurement of angles and/or actual distance/movement between certain structures that is abnormal.

And no, traction at home is definitely not diagnostic! We do these things because they help provide clues re: whether it’s worth the hassle of pursuing a diganosis.
Hi @JenB , i dont remember if her imaging suggested CCI, i will try to find out and get back to you. Btw thanks for the informative article/update you wrote re your situation and CCI. Best Wishes to you for your treatment of CCI and i hope it brings your recovery from many symptoms you have been dealing with!
 

outdamnspot

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A question for @JenB or anyone else; I did realize that one of my symptoms since becoming very sick has been occipital headaches .. severe pain radiating from the base of my neck throughout my skull. I contacted a local Chiari foundation in Australia regarding information on possibly being tested. The woman said an upright MRI is very difficult to get here (only one center in another city does it, and only privately); she also said the idea about requiring an upright MRI is a myth, however, and it can be detected through a standard MRI. However I did have an MRI while hospitalized 3 years ago (during the onset of my severe symptoms) and it was normal. Would that henceforth likely rule out Chiari?
 

zzz

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However I did have an MRI while hospitalized 3 years ago (during the onset of my severe symptoms) and it was normal. Would that henceforth likely rule out Chiari?
It depends on what they were looking for in the original MRI, how good the radiologist was and whether he could spot subtle signs of Chiari, and also whether the MRI machine was strong enough (at least 3 Tesla). If even the last condition was fulfilled, I'd recommend contacting your local Chiari foundation and seeing if they feel it's worthwhile having your scan reviewed by a specialist.
 

outdamnspot

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It depends on what they were looking for in the original MRI, how good the radiologist was and whether he could spot subtle signs of Chiari, and also whether the MRI machine was strong enough (at least 3 Tesla). If even the last condition was fulfilled, I'd recommend contacting your local Chiari foundation and seeing if they feel it's worthwhile having your scan reviewed by a specialist.
I think they were looking for lesions. I have no idea how strong the machine was? I guess I could try contact the hospital, and may also be able to get a copy of the MRI. The foundation said that if the original MRI was clear, then onset of Chiari post that would be atypical; they never really went into the possibility of error and said most neurologists should be able to spot it since it's very hard to miss.
 
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Hi everyone, I recently came across this thread. Congrats to all of you who have been able to figure this stuff out with your health.

Symptom wise, I wanted to ask if any of you have any trouble with eating like fatigue after you eat, brain fog, feeling out of it, etc? I believe this symptom may go with POTS but I am wondering if it also goes along with CCI, Chiari, etc
 

jeff_w

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Hi @Rcasey524.

Symptom wise, I wanted to ask if any of you have any trouble with eating like fatigue after you eat, brain fog, feeling out of it, etc? I believe this symptom may go with POTS but I am wondering if it also goes along with CCI, Chiari, etc
I had all of the above. My issue was CCI all along.
 

Mary

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@jeff_w - I knew a little bit about your story, but just read the full version on your website tonight. It's almost unbelievable how badly you were treated. Did anyone at the hospital ever acknowledge this? I'm sure you never received an apology but just wondering if anyone ever acknowledged the abuse you received? I almost wish we had a book compiling stories of the horrendous treatment received by ME/CFS patients. People wouldn't believe it.
 
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@jeff_w do you have any opinion/information on Dr Dan Haffez or Wisconsin Chiari Center? I'm asking because my MECFS specialist happened to be at a symposium where he lectured on the link between fibromyalgia and chiari in a certain subset of patients. He seems to understand the connection but I need to know about his skill level :)
 
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Location
maui, hawaii
Hi everyone, I recently came across this thread. Congrats to all of you who have been able to figure this stuff out with your health.

Symptom wise, I wanted to ask if any of you have any trouble with eating like fatigue after you eat, brain fog, feeling out of it, etc? I believe this symptom may go with POTS but I am wondering if it also goes along with CCI, Chiari, etc
yes, i have that same issue. it's recently gotten much worse, so i usually eat sparingly as my fatigue is already crippling. my thought is that digestion takes so much energy and i don't have any to spare. even though i normally can't get to sleep without loads of drugs and supplements, after a larger (for me) meal i will be unable to stay awake and pretty much pass out for about 3 hours, no matter the time of day.