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

[Malea]

My head wasn’t in a cage in a 1,5tesla MRI and I believe it would be possible to do flexion/extension if the radiologist would agree.

I‘m really worried about doing any extension images. (Thinking about CT atm) Several people got so ill after overextending their head, that there was no other option left than surgery

 

[Daffodil]

My head wasn’t in a cage in a 1,5tesla MRI and I believe it would be possible to do flexion/extension if the radiologist would agree.

I‘m really worried about doing any extension images. (Thinking about CT atm) Several people got so ill after overextending their head, that there was no other option left than surgery

isn't extension just bending in a particular direction?

 

[valentinelynx]

extension just bending in a particular direction?

Yes, it's putting your head back, that is, lifting your chin.

 

[Malea]

But it is more than just lifting your chin up, isn’t it?
I thought it was bending your head back as far as possible..

 

[valentinelynx]

But it is more than just lifting your chin up, isn’t it?
I thought it was bending your head back as far as possible..

I was just defining the term. What you describe would be maximal extension. Extension just means moving a body part away from the front; it says nothing about how far. Now, during the exam I expect you would be asked to move the head back as far as you are comfortable doing so. They wouldn't want you, or your son, to injure himself.

 

[Daffodil]

for these tests, the surgeons want you to extend it as far as you can, i heard

 

[Mere72]

Is a .6 Tesla the highest scanner for an upright MRI?

 

[Hip]

When I went for my 3T supine MRI my Dr asked for flex, extension & rotation. The tech told me that there is no room for movement as your head is in a cage.

Yes, I understand the head is place in a cage to immobilize it, so that you don't get any head movement while the MRI is being taken (movement would blur the image).

But I would imagine if you removed the cage, or left the top of the cage open, it may be possible to hold your head in the flexion and extension positions while lying flat in a supine MRI. Of course the hard thing would be holding your head still enough to get a sharp image while the MRI is being taken.

I am not sure why they do not make head cages that hold your head in the flexion and extension positions, for the purposes of taking these special MRI images.

 

[JasonUT]

I don't believe Jeff W had any hypermobility symptoms. Someone correct me if I'm wrong, but his neck ( as well as Jen B's) only caused the severe symptoms when turning their heads after they had procedures that manipulated their necks (after her thyroid surgery and his dental procedure). From what I have read of Jeff's story, he is encouraging people to have it assessed before it gets to that level of severity, as he believes CCI was at the root of his ME/ CFS, prior to having the symptoms when turning his neck.

I would also be interested in a good write up of the things you requested.

Can anyone confirm if @jeff_w was diagnosed with EDS or connective tissue disorder? If so, what type and is there a previous post that discusses the details?

@jeff_w seems to pose these questions on his MEchanicalbasis website, but I can't determine if he found answers.

The vast majority of these patients also had a diagnosis of Ehlers-Danlos Syndrome (EDS), a connective tissue disorder characterized by faulty collagen. There are many different types of EDS. The people in the CCI/AAI/Chiari group nearly all had EDS Type 3, the hypermobility type, abbreviated “hEDS.” A hallmark symptom of hEDS is lax ligaments. I did not have an hEDS diagnosis myself, and I didn’t consider myself to be particularly hypermobile. The only thing hypermobile about me seemed to be the ligaments of my craniocervical junction, as evidenced by the CCI/AAI.

It seemed impossible that random chance could account for over five thousand people in this group demonstrating this POTS-MCAS-CCI/AAI cluster. I began to question: Why do all of these patients with POTS and MCAS – just as I have – develop non-traumatic CCI/AAI – just as I had?

I found a possible answer in an article that discussed this exact symptom cluster: the trifecta of POTS, MCAS, and hEDS.

Did I – and the people in this CCI/AAI/Chiari group – have a specific gene underlying all of this? Did I have hypermobility-type Ehlers-Danlos Syndrome – on top of ME and everything else? I couldn’t know for sure. But, I was very sure that I would be unable to stand up very soon, as I kept getting worse.

 

[ehc918]

Is a .6 Tesla the highest scanner for an upright MRI?

From what I’ve been able to research thus far yes...

 

[Strawberry]

I am not sure why they do not make head cages that hold your head in the flexion and extension positions, for the purposes of taking these special MRI images.

Quick! Someone patent one!

 

[Daffodil]

hi @jeff_w
you seem to know a lot about the medical details of CCI / AAI. so..I know we should go to one of the EDS-literate surgeons..but what if we don't even have EDS? Does the fact that we have CFS/ME mean we have hypermobility for certain?

Also, why cant any neurosurgeon call up one of the eds ones and just ask what to do to keep the patient safe during surgery if they have EDS?

For example, there is an Indian neurosurgeon named Dr. Atul Goel. He invented a new technique to stabilize the craniocervical junction and performed revisions on other failed stabilization surgeries. What would be wrong with going there?

I just don't understand.

 

[brenda]

India is a good place to find anesthesiologists who understand the chemically sensitive due to having a major problem there with pesticide poisoning.

 

[jeff_w]

you seem to know a lot about the medical details of CCI / AAI. so..I know we should go to one of the EDS-literate surgeons..but what if we don't even have EDS? Does the fact that we have CFS/ME mean we have hypermobility for certain?

The EDS-literate neurosurgeons have the diagnostic capability to recognize these conditions when they don't occur as a result of blunt force trauma.

They also have technical expertise, with good surgical outcomes, because they do these surgeries all the time. Other neurosurgeons do these surgeries once or twice per year.

They also regularly deal with complex, chronically ill patients who have comorbid POTS, MCAS, etc.

Also, why cant any neurosurgeon call up one of the eds ones and just ask what to do to keep the patient safe during surgery if they have EDS?

You can ask any neurosurgeon to do that. I had no success asking them to do it, and I ended up offending quite a few neurosurgeons. Others have had similar experiences. It can be tricky dealing with neurosurgeons' egos. But you can always try.

For example, there is an Indian neurosurgeon named Dr. Atul Goel. He invented a new technique to stabilize the craniocervical junction and performed revisions on other failed stabilization surgeries. What would be wrong with going there?

I just don't understand.

If you want to go to Dr. Goel, then you can dive into researching him.

That's how I decided on which neurosurgeons I could recommend. I spent months finding surgical patients in Facebook groups and other forums. My life was on the line, and I didn't want to make a mistake.

There were about 10,000 patients, in total, in these groups. I combed through the groups' histories and read post after post of patients who had been to various neurosurgeons.

If you do this, you will see clear patterns. Some neurosurgeons had good surgical outcomes but had poor diagnostic ability. Other neurosurgeons had inconsistent or frankly poor surgical outcomes. A few had consistently good diagnostic ability as well as consistently good surgical outcomes. Those are the only ones I'm comfortable recommending.

I'd feel very wrong recommending other neurosurgeons at this time. Others might disagree, and that's fine. We're all free to make up our own minds.

I just did a quick scan on Dr. Goel, and I can't find any former patients online. But, with a more vigorous search, you might be able to find them. In addition to talking with former surgical patients, I'd also want to know how often he performs these surgeries, and what his diagnostic and treatment positions are on Chiari/CCI/Tethered Cord.

Good luck with this!

 

[Daffodil]

@jeff_w thanks a lot for that.

do you have any thoughts on prolotherapy/PRP/Stem cells?

I asked dr. G about this but he says he cannot comment either way because although he used to do stem cells years ago, he did it only in the lumbar region

 

[Daffodil]

i didnt think @jeff_w had hypermobility...?


another thing i wondered is....could it be that the outcomes with other surgeons is poor simply due to the damaged ligaments that those surgeons do not address? the importance of ligaments in spinal stability is not fully appreciated i think.

so they do the fusions, the ligament remains damaged or very loose, and the stability doesnt hold maybe.....?

but maybe the EDS- literate docs use some tehcniques that are less ligament dependant? or they do something to the ligaments?

 

[JasonUT]

Interesting video and clinic. I can't comment or vouch for the treatment provided. However, the message in the video echos much of what is being discussed here.

 

[Daffodil]

hi @JasonUT yes dr. hauser is a well known name in regenerative medicine but no idea if he has a lot of success or not. i found this interesting paper:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4200875/

 

[gm286]

Hello all. I was dx'd CCI earlier this year by Dr Gilete, some already know me. I'm trying to run this by some of you -- I'd seen it this morning on Jennifer Brea's twitter feed @JenB. I don't usually check up on ME/CFS news as frequently as last year but every once in a while I will. She runs a string of posts where she discusses and expresses her confusion/dismay at the fact that her brainstem was never outright suspected to cause all her issues.

And then she wonders about the mechanism: "Or maybe we develop actually hypoxia due to poor local blood flow (because of brainstem/ANS dysfunction), and the body is rightly switching to anaerobic metabolism? But why can crashes last so long? And why did increasing my acetylcholine always shorten them?" (06/14/19).

This is really interesting to me. I for one always get a kind of cognitive slow-down, a fatigue or crash, brain fog, etc when I am immobile or stationed at a desk / computer screen. The same thing occurs if I am stationed too long on a couch, watching tv. At times, with enough pressure from the couch onto my cervicals, I get this slow-onset throbbing pain in my brainstem.

The kind of fatigue/brain fog I develop in these stationary positions has been a long-running issue for me (over ten years). Similar things occur to me if I am stationed too long at a dining table or in a restaurant chair -- suddenly, I get pains in the hip joints, or in the neck area, and I get restless, or tired. I start to yawn often and need to hold my head up with my hands. It's not a tic or a bad habit, this has affected my work habit / ability for over a decade.

I think there is a whole lot of rhyme and reason to the way she sets it up in her question. Poor blood flow causes a state of hypoxia. Because blood flow actually slows down (maybe too much?) in ME/CFS patients while they are stationary. The same thing easily applies to our sleeping state. For over a decade, I wake up and I am a wreck -- stiff hip, back, neck. Pains when I walk. It then fades.

I find the argument of poor blood flow incredibly persuasive and I am really glad Jennifer Brea brought it up. I don't necessarily understand all the implications of anaerobic vs. aerobic so won't get into that but this kind of maladaptive ANS/brainstem issue could be quelled by figuring out how to improve blood flow.

 

[Waverunner]

@gm286: I was also looking into the direction of how to increase brain bloodflow or cerebral circulation. There are several studies about different kinds of supplements and medications. E.g. L-arginin reduces vasoconstriction in the brain for malaria (https://www.nature.com/articles/s41598-018-34249-2 ).

Contrary to reducing vasoconstriction, one can increase vasoconstriction, so that blood pressure rises and circulation improves. Doctors generally don't know what to go for. When you already have tight vessels, further vasoconstriction probably is a bad idea. When your blood vessels are dilated, vasoconstriction would be the way to go.