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

[Rufous McKinney]

Will your medical insurance cover this surgery? Curious

 

[jeff_w]

I am writing for @MartinDH who is in a very severe condition (100% bedbound, no communication possible anymore). Currently there is no chance to do the whole procedure with MRI (...).

Sorry to hear this.

But we are thinking about doing the Trendelenburg-Position, Traction Test and buying a neck brace/neck stretching device. What would you suggest to do first?

If you’re going to try this, I would start out very cautiously, since he’s in such a severe condition. What helped me a lot was gentle manual traction while I was lying down. You’ll need to research how to do it correctly. There’s great, accurate info on Google.

Manual traction isn’t something he can do on his own. Another person has to do it.

I wouldn’t risk over-the-door traction at this time, because I’d recommend going really slowly with his severe condition, and door traction is pretty intense. It didn’t work for me (though it does work for some), but manual traction did, as did a halo.

Has the Traction Test to be done by an expert (which one?) or can I do it? Which neck device did you use first to get out of the severe condition?

I used a Philadelphia cervical collar. You can buy these online. This collar worked for a few months, but, I eventually became non-functional even with that collar. The next step was a halo, which screws directly into the skull and can only be applied by a medical professional. Then came surgery.

Good luck with this.

 

[Sidny]

@jeff_w were you able to determine what the cause of your cervical instability was? Was it some sort of connective tissue degeneration?

Also despite your fusion have those processes of degeneration stopped yet?

I ask because since my onset I have been experiencing almost a type muscle/tissue wasting in my head and neck region it seems. Lots of weakness in all those supportive structures when I had super sound stability and structural integrity before onset.

It would be great if some sort of pathological process were identified and treated rather than what seems to be the downstream structural issue months/years later.

I'm asking this from the Point of view that maybe chiari isn't necessarily a cause but a symptom along the trajectory of whatever triggers me/cfs

 

[dreampop]

@jeff_w Jeff, are your results still holding?

 

[jeff_w]

Will your medical insurance cover this surgery? Curious

Yes.

 

[jeff_w]

@jeff_w Jeff, are your results still holding?

Yes. The POTS and PEM that I had for 4 years have remained gone since my halo and surgery.

 

[jeff_w]

were you able to determine what the cause of your cervical instability was? Was it some sort of connective tissue degeneration?

That’s exactly what it was.

Also despite your fusion have those processes of degeneration stopped yet?

Well, I’m upright now, as opposed to bedridden. Being upright is doing a lot to build muscle and stabilize those tissues.

I ask because since my onset I have been experiencing almost a type muscle/tissue wasting in my head and neck region it seems. Lots of weakness in all those supportive structures when I had super sound stability and structural integrity before onset.

That’s extremely interesting. Have you considered consulting a specialist neurosurgeon? I’d recommend it.

It would be great if some sort of pathological process were identified and treated rather than what seems to be the downstream structural issue months/years later.

I agree 100%, and I often think about this. One theory of the pathological process is a genetic connective tissue problem. If this connective tissue could be strengthened early in life, then these pathologies could potentially never develop.

I'm asking this from the Point of view that maybe chiari isn't necessarily a cause but a symptom along the trajectory of whatever triggers me/cfs

It’s an interesting hypothesis. In my own case, the craniocervical instability was the causal factor for my ME/CFS (POTS, PEM, etc.). It’s easy enough for me to be certain of this, given how completely my illness was eliminated by correcting the CCI.

Remember though, I had craniocervical instability, not Chiari. But the two often co-occur, and there’s a lot of symptom overlap.

From what I understand through research, Chiari is most often congenital. But, it can also be acquired as a result of a tethered spinal cord (which is itself congenital). Craniocervical instability, which I had, frequently occurs with both Chiari and a tethered cord. All three of these are fairly common in connective tissue disorders (CTDs), and these CTDs are — unfortunately — severely under-diagnosed.

 

[sb4]

@jeff_w Good to see you back. I think there is a possibility that although your CCI was causing your symptoms, the thing causing the instability is still there (virus?). I don't think it matters too much as long as your surgery holds up.

As for me, I found that I can get an upright MRI at a place not too far away (leeds) for £1100, which accepts NHS refferels. I cannot really afford this. I went to my GP with this information and he said he couldn't and I should write to my CFS infectious disease specialist. I wrote to them and included a bunch of reference to back up this CCI/IIH angle but they said they don't think its that.

I then sent an email to my POTS specialist (neurology) and met with a different doctors at my appointment in London 2 weeks ago. I explained to her the possibility of this CCI and how easy the test would be. She said it's pointless as I already have a diagnosis of POTS. I explained to her that my 3 diagnosis (POTS, CFS, Gastroparesis) are all idiopathic yet CCI isn't and has treatments that work. She said that a whole group of specialist looked at my Tilt Table Test results and nothing suggested spinal involvement. I told her that you couldn't determine that from those tests and it needed to be an upright MRI with flexion/extension viewed by specialists in this disease to make the diagnosis and she brushed it off saying again that the specialist team saw nothing to indicate spinal problems.

Have to say I'm pretty disappointed. I thought I might be able to convince 1 of the 3 especially as what I am asking for isn't going to bankrupt the NHS. I find, however, that almost all of my suggestions get blow off by doctors so I sort of expected it.

I guess the upright MRI will have to be put on the back burner until a rainy day (if it rains money that is).

 

[Dakota15]

@jeff_w

Thanks for coming back on here Jeff and updating us on your story - we all appreciate it.

In terms of the neck / structural abnormalities connection, have you ever come across in any reading in regards to whiplash and connection to CCI/Chiari/etc? I only ask because I was involved in a car accident that induced severe whiplash days before I experienced my POTS and PEM. Every test up until this point with my spine / brain hasn't revealed any abnormalities (MRI's and CT) but I've continued to wonder. However, I didn't know if these issues are mainly correlated to degenerative tissue and phsyiological processes etc and it's just happenstance with me with timing of the accident.

Feel free to PM me if you'd rather prefer that route but thought I would ask your opinion as I greatly appreciate!

 

[sb4]

@Dakota15 Although @jeff_w will know more about this I would say yes! It is a big red flag if your onset of POTS etc was days after whiplash. As far as I am aware, that is the most common cause of CCI which could then, of course, lead to POTS.

 

[Dakota15]

Appreciate your input @sb4

 

[jeff_w]

I went to my GP with this information and he said he couldn't and I should write to my CFS infectious disease specialist. I wrote to them and included a bunch of reference to back up this CCI/IIH angle but they said they don't think its that.

It seems like they dismissed it on reflex, because it’s new information to them and — especially — because this information came from a patient.

I then sent an email to my POTS specialist (neurology) and met with a different doctors at my appointment in London 2 weeks ago. I explained to her the possibility of this CCI and how easy the test would be. She said it's pointless as I already have a diagnosis of POTS.

What does that even mean? Absurd. Ignorant.

I explained to her that my 3 diagnosis (POTS, CFS, Gastroparesis) are all idiopathic yet CCI isn't and has treatments that work. She said that a whole group of specialist looked at my Tilt Table Test results and nothing suggested spinal involvement.

A tilt table test doesn’t examine the spine whatsoever. And those specialists who interpreted your TTT aren’t spine specialists.

I told her that you couldn't determine that from those tests and it needed to be an upright MRI with flexion/extension viewed by specialists in this disease to make the diagnosis and she brushed it off saying again that the specialist team saw nothing to indicate spinal problems.

They really doubled down on the B.S. and the ignorance. The doctors are probably very offended by your suggestions. They’re generally fragile about knowledgeable patients.

Have to say I'm pretty disappointed. I thought I might be able to convince 1 of the 3 especially as what I am asking for isn't going to bankrupt the NHS.

I hope you can keep trying and somehow convince someone to do it. You came so close.

I find, however, that almost all of my suggestions get blow off by doctors so I sort of expected it.

Yes. It’s so typical and maddening. These doctors have zero knowledge of this topic and no grounds to dismiss the relevant research on its merits.

 

[jeff_w]

In terms of the neck / structural abnormalities connection, have you ever come across in any reading in regards to whiplash and connection to CCI/Chiari/etc?

Yes! Whiplash is often the trigger for CCI, and if you have Chiari, whiplash can kick it into high gear.

I only ask because I was involved in a car accident that induced severe whiplash days before I experienced my POTS and PEM.

As @sb4 said, that is a huge sign.

The way to test for CCI is with motion MRIs and CT scans. The MRIs and CT scans that are taken when you're lying down and not moving, those won't show the problem. They will only show things like bulging discs, masses, bone spurs, stenosis, etc..

Every test up until this point with my spine / brain hasn't revealed any abnormalities (MRI's and CT) but I've continued to wonder.

Did you have motion (flexion-extension) MRIs/CTs, or were they stationary? If they were stationary, then you'll need the flexion-extension ones, and only a handful of neurosurgeons are consistently able to diagnose this problem.

 

[Dakota15]

Appreciate it @jeff_w - I have only had a stationary MRI and CT scan, nothing motion (flexion-extension).

Sounds like I should in the very least pursue a motion MRI and get it checked.

 

[Dakota15]

Hey @jeff_w (or if anyone else knows) - don't mean to be a burden, but if I was interested in sending my MRI test to Dr. Henderson (I know you went to Dr. Bolognese), do you know if he allows a Skype consultation like Dr. Bolognese does?

I live in the Midwest and that's a huge luxury that sounds like Dr. Bolognese does for his out-of-state patients....if you don't know then no worries but just thought I would ask.

 

[bball222]

@jeff_w Thanks for all this info man! It sounds like our situations are identical. I am almost positive my Pots, CFS is caused by EDS and have been looking into craniocervical instability. I never had many joint issues aside from some shoulder things when playing baseball, and have always been athletic, so I never would've thought I had anything. Then this in my 20s out of nowhere.

A few questions I had, how did your pots come on? And how significant of a heart rate rise did you have standing? Did you have red hands and feet from blood pooling? Also, what symptoms did you have on a day to day? Mine is mostly pots and severe brain fog, but not a ton of pain or anything.

As far as the surgery, do you think it will get you back to working and living a somewhat normal life? And what's your range of motion looking like/what do you expect it to get to? Thanks!

 

[NaxavisDragonLady]

Thanks for all of this info and for being patient zero for Dr. K!

I just received my diagnosis of craniocervical instability today. Dr. K is helping me find a PT in my area that can properly perform the manual traction and observe the results, and sounds like I will get some type of home traction as well and will have to report results. The intent being that if traction relieves symptoms, then thst would likely mean surgery.

He did not mention my specific measurements (so I will have to ask), but it was found on a supine MRI surprisingly, so I am concerned that means it was severe enough to be found supine. Do you know if that is accurate? That if they find it and label positive for CCI (not equivocal but positive) from Just a suprine MRI, that that means it is a severe case?

 

[Cally]

I'm also a patient of Dr. Kaufman's - I just had an appointment with him earlier this week. He ordered a supine MRI for me as well. I was confused by that, because I've read here on the forum to get an upright MRI. I asked him about it, and he said a supine 3T MRI would be better. I don't remember the exact words he used, something about being more precise about little details, since they have to measure things that are very small. Maybe he has new information about imaging and diagnosis? I thought I'd check in with folks here to see what they think.

By the way, thank you SO much Jeff for sharing your experience and hard-earned knowledge with us on the forum! I've been following your updates closely - I'm thrilled that you found a treatment that has been successful for you!

 

[xrayspex]

Regarding position of head, neck etc and worsening of symptoms--does make a difference on wax and wane for some of us--definitely does for me which is part of reason I dread going to dentist or even eye doctor for routine care

https://www.practicalpainmanagement...neck-pain-importance-positional-cervical-cord
(Holman)

Andrew Holman studied this for years in Seattle and published on it...he was intrigued by Dan Heffez who was one of first neurosurgeons connecting fibro and CFS to Chiari and cervical stenosis/myelopathy in 90s
I have consulted with Heffez several times the last 20 years and Holman a few years ago....and surgeon Michael Rosner years ago in NC when he looking into this as well as some other local surgeons that were not some open to these connections....I am intrigued to see it has come up again....just wish the med system would have put more focus on it so it wasn't so hard to figure this out for so many years! (for me anyway--due to my chemical sensitivity have held off on getting surgery so far but still consider from time to time--I have been thinking about it a lot again this year after suffering another concussion and craniocervical issues flaring)

but google rheumatologist Dan Holman and his colleague Patrick Wood for more info on history

Dan Heffez has published --he might be the guy on the 20/20 vid someone posted--back in 2001ish there was big uproar that set the research back on CFS and chiari because WAllstreet Journal made it sound like neurosurgeons were doing chairi surgery just on basis of fibromyalgia or CFS diagnosis alone but Heffez never operated if neuro deficits meeting surgical criteria were not there---there has been big reluctance imho in conventional medicine to embrace this theory of treating cfs for 20 years...

http://www.anapsid.org/cnd/diagnosis/chiari.html

Heffez DS, Ross RE, Shade-Zeldow Y, et al. Treatment of cervical myelopathy in patients with the fibromyalgia syndrome: outcomes and implications. Eur Spine J. 2007 Sep;16(9):1423–33. PubMed #17426987. PainSci #52887.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3476600/


Michael Rosner was part of early work out in NC--but he got hassled a lot and may have lost license http://www.blueridgenow.com/news/20110219/couple-seek-out-neurosurgeon

Hi @femtosecond99!

The emphasis here, IMO, is on consistently. Meaning that other specialists might not be able to identify the more "hidden" cases.

Upright mri's are not only pictures that are taken while the patients are sitting (instead of lying). They are also taken while the patients are moving their heads/necks into different positions.
So that means there are a lot of pictures taken, all have to be looked at very carefully, measuring a lot of different angles, etc. As I said above, even fractures tend to be overlooked quite commonly [in still pictures!].

So I really appreciate Jeff's recommendations of the most reliable specialists to diagnose/outrule Chiari and CCI.



I don't know if Jeff mentioned it anywhere. I do not know if this is even the case in most people with Chiari and/or CCI. It is something that I would expect, as I said above.

Imagine you'd have a prolapsed lumbar disc. It would hurt* pretty much all the time, but would inhibit you from standing upright, while would be better lying on your back with your legs elevated on a stool etc. Now imagine you'd have to cough or sneeze... [* there might be other symptoms as well, just focusing on pain here]

So I'd say symptoms would be dependent on what structure/s (brain? nerve roots? spinal cord?) being compressed at what length of time (permanently? intermittendly?). And also bearing in mind that compression would additionally lead to inflammation of these structures, leading to further and/or increasing current symptoms.

P.S. English is not my first language, so I'd like to apologize for any unprecise/wrong/funny wording.

And Hi @Wayne

Thanks for the link, interesting indeed!
Yesterday, I ordered a soft cervical collar, just to find out if certain symptoms might be related to my neck. I've had 4 whiplash injuries in the past and my neck is kind of my 'weak spot'.

 

[bball222]

Hey everyone. Wanted to post an update. I got a flexion extension mri and it looks like craniocervical instability is my issue as well. Will be talking to Bolognese in the coming weeks. @jeff_w I know i've never spoken to you, but would you be open to a skype call? I'm freaking out about this a bit.