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

[toyfoof]

I'm curious about this... do you know if the neurosurgeon meant C0-C1 are rarely written about in reports (only abnormalities mentioned), or that C0-C1 aren't really looked at while reading standard scans?

My sense was the latter. My vertebrae were labeled on the scan, starting at C2, though C1 and C0 (and higher) were clearly visible. And my written report went through each joint, starting at C2-C3 and going down into the thoracic spine. You might get different results if you specify that you want that section looked at as well, though I’m not sure; my guess would be most radiologists don’t know too much about that area since they don’t typically include it.

 

[GypsyGirl]

My sense was the latter. My vertebrae were labeled on the scan, starting at C2, though C1 and C0 (and higher) were clearly visible. And my written report went through each joint, starting at C2-C3 and going down into the thoracic spine. You might get different results if you specify that you want that section looked at as well, though I’m not sure; my guess would be most radiologists don’t know too much about that area since they don’t typically include it.

Oof. No wonder cranio-cervical junction issues are often missed.

 

[toyfoof]

Oof. No wonder cranio-cervical junction issues are often missed.

Yes, I believe this is a key reason that @jeff_w recommends the small handful of neurosurgeons that he’s researched, and advises to go beyond (or outright ignore) your radiologist’s report, if you’re looking for CCI.

 

[AnkeC]

My sense was the latter. My vertebrae were labeled on the scan, starting at C2, though C1 and C0 (and higher) were clearly visible. And my written report went through each joint, starting at C2-C3 and going down into the thoracic spine. You might get different results if you specify that you want that section looked at as well, though I’m not sure; my guess would be most radiologists don’t know too much about that area since they don’t typically include it.

Interesting.
I had 3T MRI scans done a couple of weeks ago, and my report also started at C2-C3 (and higher).
My Dr had specifically queried cci, and Chiari on the referral.
Which is probably why a "minimal Chiari I Malformation" was even mentioned.
However, in the report there was a suggestion that if CCI needed to be investigated further, a CT scan with movement should be the next course of action. Which I did a week later. Havent seen that report yet....might be a couple more days till I do.

 

[Daffodil]

ligament damage after upper airway infection in 2 children:

https://www.researchgate.net/public...us_Instability_A_Variant_of_Grisel's_Syndrome

 

[Daffodil]

so check this out: according to Dr. G, my translational BAI is 8 mm! anything above 1 mm is bad. this is the slide between c0 and c1!

but some scores are normal...like the grabb oakes..?

do you guys know ...are these measurements determined by actually looking at the MRI images and then physically measuring, or are the numbers provided during the imaging, by a program?

if the numbers are provided by the imaging programs, then why do the radiologists always say its all normal?

thanks!

 

[Daffodil]

hi @mattie , hope you are doing amazingly. i wanted to ask if you wouldnt mind posting your CXA, BAI, etc measurements on this thread. I wanted to compare them to mine (from dr G) and thought it might help others...

thank you!!

 

[GypsyGirl]

do you guys know ...are these measurements determined by actually looking at the MRI images and then physically measuring, or are the numbers provided during the imaging, by a program?

if the numbers are provided by the imaging programs, then why do the radiologists always say its all normal?

thanks!

@toyfoof mentioned earlier in this thread (on this page or the previous) that reports usually don't include C0 and C1 because they're considered "very stable" - so radiologists aren't looking for where the biggest problem is for folks like us (including C0 & C1 to check for CCI and AAI). Not only no program automatically sorting it, but they don't consider that area for manual measurements either because they're assuming it's stable.

Another factor is standard evaluation usually only considers vertical instability (measured by the BDI/basion dens interval, I think), not rotational or horizontal.

Perhaps another reason is that the measurements themselves are not widely known - the non-EDS familiar spinal specialists I've seen so far were not familiar with all the measurements EDS-familiar neurosurgeons commonly use - the CXA, Harris measurement, Grabb Oakes.

 

[Daffodil]

@GypsyGirl thanks for this. the regenexx doc wants a report with the measurements and it should say things like:

"on lateral bending the left C1 on 2 overhang was xx mm vs yy on right. The ADI was xx..."

is this sort of thing included in the radiology report with the DMX or does the doctor determine these measurements after? perhaps someone who has had a DMX can tell me...?

I had an incomplete DMX at a chiro's office (the machine malfunctioned) so now i have to get more radiation ugh. he was a good chiro too but i got so mad at him about the machine, i cant go back to him for help lol

 

[Seven7]

I personally know of 2 people that for years had a CFS diagnosis and were finally found to have a chiari malformation and their issues resolved after minor surgery.
The symptoms of chiari are almost identical to CFS.

Just a thought...

My friend has chairy, she can do anything , excercise... no fatigue and only get really bad headaches ( disabling)
So I wonder only cfs shows when there is Compresion of the spine????

 

[Daffodil]

My friend has chairy, she can do anything , excercise... no fatigue and only get really bad headaches ( disabling)
So I wonder only cfs shows when there is Compresion of the spine????

assuming this is the cause of CFS, i would say yes...

 

[tornerose]

@Daffodil
Translational BAI is the difference in the BAI from one position to another. So dr. G measured your BAI in flexion and extension and calculated the difference. It’s done manually, so different surgeons can end up with different results.

What is your CXA and Grabb-Oakes interval? Did the report mention anything else?

My measurements:
CXA: 126 degrees
Grabb-Oakes: 10 mm
Translational BAI: 4 mm

 

[Daffodil]

@tornerose thanks a lot for that info. this is what was on my preliminary report. t he doc did not yet have a DMX. i get the feeling that because my graab oakes score is normal and also radiology reports say nothing is wrong, i am going to have a hard time getting help. but they should take a surgeons report seriously...i hope.

 

[Daffodil]

@tornerose so you definitely have spinal cord compression if your CXA is that low...

it says online that

• the CXA varies from 150° in flexion to 180° in extension.
• If the BAI changes by > 2 mm between flexion and extension, then craniocervical instability is inferred

the other stuff is over my foggy head...if anyone can explain more, i would appreciate.....

 

[hezza]

Help please @mattie @jeff_w @JenB or anyone else who would know. Bolognese reviewed my supine 1.5T MRI from 5 yrs ago. His conclusion was for me to do manual traction w/ a physical therapist, if I have dramatic results we are to move forward w/ the assessment. I have my first appointment w/ the pt next week & need to know what I’m looking for.

Would one expect dramatic results “during” as in strictly while you are on the pt table being tractioned or might I expect a more lasting, albeit temporary, improvement- one that you would continue to experience after becoming upright again? Should this be evident from one session or would multiple sessions be required?

Thanks everyone for sharing your journey

 

[tornerose]

i get the feeling that because my graab oakes score is normal and also radiology reports say nothing is wrong, i am going to have a hard time getting help. but they should take a surgeons report seriously...i hope.

The problem is that the meaning of these measurements is not clear. There isn’t support in the scientific literature for using them separately to diagnose CCI. My impression it that what “normal” surgeons care about is basilar invagination (odontoid process projecting more than 3 mm above the chamberlain line) + specific symptoms... In my country, the neurosurgeons who deal with these issues think Gilete and Bolognese are villains. They are highly skeptical of Smith (Medserena) as well...

 

[Daffodil]

@tornerose oh. now it is starting to make sense as to why so many cannot get help. if these eds-literate surgeons are not taken seriously by other neurosurgeons, that is very bad.

i have the sliding issue between c0 - c1 (i am not really sure what that means) which probably isnt even looked for or recognized by most

 

[Likaloha]

I had to ask for a special scan to look for chari's as it did not show up in other scans...I was told my case was non surgical and that was great by me... Enough surgeries for a while and much of my problems due to brain damage from my West Nile meningoencephalitis...Good luck to you others if you can find help!

 

[Daffodil]

I had to ask for a special scan to look for chari's as it did not show up in other scans...I was told my case was non surgical and that was great by me... Enough surgeries for a while and much of my problems due to brain damage from my West Nile meningoencephalitis...Good luck to you others if you can find help!

wow. may i ask...did one of the eds-literate doctors say it was non-surgical? perhaps you can send your scans to dr. gilete and see what he says, just for a second opinion? you never know.....

 

[Likaloha]

wow. may i ask...did one of the eds-literate doctors say it was non-surgical? perhaps you can send your scans to dr. gilete and see what he says, just for a second opinion? you never know.....

Daffodil.. Thanks for the interest.... I will take your advice under advisement and check out dr. Gilet!