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

[anne_likes_red]

Not that I know of. They just said it was normal.

The MRI was due to low Testosterone. They wanted to see if the pituitary was the problem.

I had an MRI to look at the pituitary too. I had slightly elevated prolactin and they wanted rule out the possibility of a tumour... which they did. Did you get an answer anywhere on whether imaging like this could be helpful for looking into the possibility of cervical spine issues?
Thx muchly Anne.

 

[Daffodil]

@valentinelynx oh its much worse here. the test probably doesnt even exist or if it does, they only do it if someone is on their deathbed or something. its brutal. i had my doc order flexion extension rotation MRI but the radiologist at the hospital said no we do not do that for cervical spine...not part of the established protocol. doc asked for 3T MRI...radiologist says no, 3T is not needed for cervical spine. wtf?

so getting requisitions is not the problem...i have created relationships with 1 or 2 docs over the last 27 yrs

about the venogram...i see the word "angio"....doesnt that mean invasive? angiogram of heart they insert catheter etc....

xo

 

[Thegriz]

Of interest, all three patients in our series had potentially pathological clivo-axial angles.

@jeff_w do you know if any of these patients got follow up mri's to see CXA measurements after surgery?

 

[sb4]

Did you get an answer anywhere on whether imaging like this could be helpful for looking into the possibility of cervical spine issues?
Thx muchly Anne.

I don't think I did receive an answer but I came away with the impression that it isn't sufficient. Perhaps I read it somewhere? I am going to ask for a copy of all my past test results, regardless, next time I see a doctor. Doubt they will give me MRI results though.

 

[valentinelynx]

the test probably doesnt even exist or if it does, they only do it if someone is on their deathbed or something. its brutal.

I understand that the tests are only used for specific indications, which is true in the US as well, except the controllers are the insurance companies. Depending on your insurance it can be easy or nearly impossible to get a test approved, meaning that insurance will pay for some or all of it. Of course, in the US, if your doctor orders a test, you have the option to pay for it out-of-pocket if you have the means.

about the venogram...i see the word "angio"....doesnt that mean invasive? angiogram of heart they insert catheter etc....

True, most cardiac angiograms are still done the invasive way. However, newer technology allows studies of vessels using MRI, even of coronary vessels. Here's a quote from a good discussion of this from Johns Hopkins: "Unlike a traditional angiogram, which requires inserting a catheter into the body, magnetic resonance angiography is a far less invasive and less painful test." Here's another discussion of MR angiography and it's various applications.

I had an MR angiogram of my brain (without contrast in my case) when I was first diagnosed with EDS, to make sure I didn't have any nasty aneurysms lurking in there (I didn't). Maybe more brain angiograms are done with MRI than cardiac, because of the reduced risk.

The word angio means "relating to blood vessels" and gram means "record or picture", so angiogram simply means "picture of blood vessels" with no implication of how the picture is acquired.

I don't know which tests are available in Canada or how it's determined that you need a certain test. I did find reference to MR angiography at the Critical Care Trauma Centre in London, Ontario, which suggests to me that they do this test there, at least. Probably it is available at any of the university hospitals.

In the US, I would suggest once you found out exactly what test the neurosurgeon you are talking to wants done (I see you wrote that he wanted, "MRI with contrast (gadolinium enhanced) angio/venogram of the head and neck, study of intracranial arteries, veins, and sinuses down to the subaortic trunks" which means, in essence an "MRA of the head and neck", looking into what facilities provide it, and asking a doctor to order it for you. Or, if the ordering doctor is experienced in the area, he or she will likely direct you to a facility that does it. With insurance involved, that doctor would likely need to be willing to pursue prior authorization procedures (justifying the need for the exam and persuading the insurance that the exam is medically necessary). I don't know how it works in Canada.

 

[Daffodil]

@valentinelynx wow thank you!! that helps a lot! its good having more medical peeps on the board lol

I will call a university hospital today. I was avoiding it because they re so hard to get answers from, especially when you tell them you are not calling from a doctor's office.

if I can get it done free, I will try. if not, I will skip it for now because I cannot have surgery anyway and will be trying stem cells...

xoxo

 

[ehc918]

Has anyone had CCI/AAI or chiari missed on a standard MRI??????

I need direction- I have been struggling to find a root cause of my CFS for over a decade. I would characterize myself as having moderate issues- I am able to work from home part time, but the unpredictable nature of my symptoms have made life very difficult. I have no lab test confirmation for anything really. I’ve never had to go to ER for anything.

I recently had an episode where my neck got “messed up”- bending over the sink brushing my teeth which resulted in excruciating pain that radiated down my arms- numbness, tingling, inability to lift them. I could not stand upright. I went and had a neck MRI 2 weeks later which revealed stenosis/poss. impingement issues, bone spurs- C3-6. (Part of this issue is from extensive scoliosis surgery as a 14yo. I had a severe case, a triple S curve.) So my dr ordered PT.

I was shown a leg press maneuver where my shoulders/neck were weighted with resistance and I pushed away from the bottom plate. A few hours later, I experienced a horrific exacerbation of my worst symptoms- headache, weird vertigo, grogginess, crushing fatigue- just completely out of it. It was this that led me to research “neck” and “CFS”, which led me to Jeff and Jen’s CCI diagnosis stories (yes! I watched Unrest!), which also led me to chiari and positional cervical cord compression.

Imaging history: In 2018 I had a supine brain MRI which was normal except for deviated septum. In March I had a supine neck MRI which showed the degenerative neck issues. I also had flexed/extended neck xrays which didn’t show any instability. Nothing has indicated chiari or any brainstem or spinal cord issues whatsoever.

I contacted Dr Bolognese to see if he would, for a fee, look over my existing scans to see if he could detect anything. I received what seems to be the standard response of “get traction and see if it helps.”

I’m at a loss as to what to do. I’ve found evidence that some radiologists miss an obvious chiari. I’ve seen evidence that tendon laxity issues can cause normal MRI results in supine imaging. I’ve also found that positional imaging is sometimes needed to detect spinal cord issues.

I’m sorry to ramble. Like most of us I don’t have the income or resources to go out of my insurance network.

I’m just very curious whether anyone has had a missed issue on MRI, or maybe I should just move on due to lack any corroboration thus far.

Thank you in advance

 

[Daffodil]

Has anyone had CCI/AAI or chiari missed on a standard MRI??????

I need direction- I have been struggling to find a root cause of my CFS for over a decade. I would characterize myself as having moderate issues- I am able to work from home part time, but the unpredictable nature of my symptoms have made life very difficult. I have no lab test confirmation for anything really. I’ve never had to go to ER for anything.

I recently had an episode where my neck got “messed up”- bending over the sink brushing my teeth which resulted in excruciating pain that radiated down my arms- numbness, tingling, inability to lift them. I could not stand upright. I went and had a neck MRI 2 weeks later which revealed stenosis/poss. impingement issues, bone spurs- C3-6. (Part of this issue is from extensive scoliosis surgery as a 14yo. I had a severe case, a triple S curve.) So my dr ordered PT.

I was shown a leg press maneuver where my shoulders/neck were weighted with resistance and I pushed away from the bottom plate. A few hours later, I experienced a horrific exacerbation of my worst symptoms- headache, weird vertigo, grogginess, crushing fatigue- just completely out of it. It was this that led me to research “neck” and “CFS”, which led me to Jeff and Jen’s CCI diagnosis stories (yes! I watched Unrest!), which also led me to chiari and positional cervical cord compression.

Imaging history: In 2018 I had a supine brain MRI which was normal except for deviated septum. In March I had a supine neck MRI which showed the degenerative neck issues. I also had flexed/extended neck xrays which didn’t show any instability. Nothing has indicated chiari or any brainstem or spinal cord issues whatsoever.

I contacted Dr Bolognese to see if he would, for a fee, look over my existing scans to see if he could detect anything. I received what seems to be the standard response of “get traction and see if it helps.”

I’m at a loss as to what to do. I’ve found evidence that some radiologists miss an obvious chiari. I’ve seen evidence that tendon laxity issues can cause normal MRI results in supine imaging. I’ve also found that positional imaging is sometimes needed to detect spinal cord issues.

I’m sorry to ramble. Like most of us I don’t have the income or resources to go out of my insurance network.

I’m just very curious whether anyone has had a missed issue on MRI, or maybe I should just move on due to lack any corroboration thus far.

Thank you in advance

yes you could still have it. its missed all the time by radiologists. dr. Bolognese doesn't tell everyone to try traction..i think some people he rejects outright.

there are also other tests you can have like a DMX or an upright MRI with flexion extension rotation views and you can send them to him or another doc

 

[MartinK]

Hi all,
thanks a lot for many info here about Chiari and Craniocervical Instability. My back and cervical spine are bad - morbus scheuermann... maybe here is my main problem of CFS, PEMs and inflammation. After 6 years with lot of struggling Im trying to prepare on some investigation in this area.
My english skills are little bit low and lot of info here makes me a bit confused :-/

Please, what is the best way to initiate ivestigation on CCI problems?
- find hospital with upright MRI and good neurosurgeons? (or find more tests?)
- trying some neck braces for test what happens to the symptoms?
- distribute MRI to more docs?
- try some neck exricises?
- PRP?

Thanks a lot for some summary!

Martin

 

[Joly]

Hi @MartinK I highly recommend if you think you might have CCI/AAI that you do not attempt any kind of neck exercises or braces until you know more, as this could make your symptoms worse.

If you're looking to investigate your symptoms and you have already done a supine MRI, you could contact Dr Bolognese in New York.

Otherwise, an upright MRI can taken and be sent to Dr Gilete in Barcelona for a distance consultation.

https://www.mechanicalbasis.org/ has a good breakdown of information regarding M.E/CFS and CCI/AAI and a list of neurosurgeons and their contact information.

 

[ehc918]

To further clarify necessary testing, I’m concerned about the standardization of imaging. My MRI report does not specify the strength of the magnet, and from hearing about 3T (3Tesla) as being “new”, “better”, “preferred” I’ve since found some machines have a 2, 1.5, 1.2- and the upright MRI facility near me uses a 0.6T.

Is it a matter of imaging and magnet strength? Or a matter of who reads the report?

 

[Joly]

Hi @ehc918 it's my understanding that 3T MRI are the newest and strongest MRI machines available which is why some doctors prefer them as the image is clearer and possible abnormalities are easier to spot. Dr Bolognese, for example, prefers a supine 3T MRI scan be submitted for his consultations.

The stronger the magnetic field is, the clearer the image, but in some instances a specialist may prefer upright which is less clear than 3T because it will provide more diagnostic information overall.

Currently upright MRI scans are not available in 3T but unlike with a supine scan the flexion, extension, and rotational views show the problematic areas from different angles, including how the movement of the neck and head affects the spinal cord, which other specialists, like Dr Gilete, prefer as it gives them a better idea of what is going on.

I'm not sure where you're located but currently, only Dr B and Dr G offer distance consults, to my knowledge. If you're interested in seeking a consultation from Dr Gilete, you would need to get an upright flexion, extension and rotation MRI scan of the craniocervical junction and cervical spine. I hope this helps!

 

[Pondering]

@valentinelynx oh its much worse here. the test probably doesnt even exist or if it does, they only do it if someone is on their deathbed or something. its brutal. i had my doc order flexion extension rotation MRI but the radiologist at the hospital said no we do not do that for cervical spine...not part of the established protocol. doc asked for 3T MRI...radiologist says no, 3T is not needed for cervical spine. wtf?

so getting requisitions is not the problem...i have created relationships with 1 or 2 docs over the last 27 yrs

about the venogram...i see the word "angio"....doesnt that mean invasive? angiogram of heart they insert catheter etc....

xo

There is a private clinic in Vancouver that does 3T. Not sure about out east.

 

[Joly]

Or a matter of who reads the report?

I forgot to add (brain fog, sorry) that who reads the report is also a factor as radiologists, doctors, and non-specialist neurosurgeons often miss signs of CCI/AAI and Chiari on MRI scans.

 

[MartinK]

Hey, thanks!
Im from Czech Republic - looking first for someone here and dr Gilete looks good to send results!

We have some 3T MRI here in hospitals, but no for upright. Upright is here with lover T. its OK?
Supine MRI? I will look at it in Czech language, heard for the first time.

This two MRI are "gold standard"? upright + supine?

Yeah, know "mechanicalbasis" ...this guy is here on forum, right? I write to him in few days ago.
I had a Lyme and EBV for sure when I was young, but treatments no works, looks like roots of my proglems are somewhere - maybe in my bad back!

 

[Joly]

Supine MRI just means an MRI taken when you are lying down on your back.
A lower Tesla rating for upright MRI is fine, it's more about the different images they can get with it.
I also had EBV that trigged my M.E symptoms and am currently waiting for my results from Dr Gilete!

 

[Daffodil]

There is a private clinic in Vancouver that does 3T. Not sure about out east.

thanks i actually called patient relations and they got me the 3T but in November. :-/

 

[Mere72]

CCI - It's on the table, but I have my doubts. I don't think I have any hypermobility symptoms. Perhaps, the opposite. My PT tells me my back is very stiff and guarded. Also, my symptoms don't seem to be exacerbated by turning or rotating my neck.

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.

 

[Hip]

One question I wondered about: why can't you do flexion (chin down) and extension (chin up) head positions in a supine MRI? Why it it necessary to find an upright MRI for flexion and extension?

Regular supine MRIs are common, whereas it is harder and more expensive to find an upright MRI.

 

[AnkeC]

One question I wondered about: why can't you do flexion (chin down) and extension (chin up) head positions in a supine MRI? Why it it necessary to find an upright MRI for flexion and extension?

Regular supine MRIs are common, whereas it is harder and more expensive to find an upright MRI.

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. So my Dr ordered a duplicate in a CT scanner as well. And I sent both scans to Dr G and Dr B.
I think Dr G primarily used the CT to diagnose me.