Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

Silencio

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2 years ago for me I was more severe and bedridden for an 18 month period, after having not been careful enough for my first two years!. I am pretty careful now. I only go out w my caregiver for short periods to quiet places. But I can manage travel too when I must, with noise cancelling headphones, airport wheelchair etc. It’s not pleasant, lot of payback, but doable.

No EDS, although I am a v bendy person and have scoliosis. I have CCI / AAI / subaxial instability / tonsillar descent remote diagnoses from Gilete, seeing him in person in a month, and Bolognese has agreed to an appt. so pursuing both. How is your progress.. can you get to MRIs?
 

bread.

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2 years ago for me I was more severe and bedridden for an 18 month period, after having not been careful enough for my first two years!. I am pretty careful now. I only go out w my caregiver for short periods to quiet places. But I can manage travel too when I must, with noise cancelling headphones, airport wheelchair etc. It’s not pleasant, lot of payback, but doable.

No EDS, although I am a v bendy person and have scoliosis. I have CCI / AAI / subaxial instability / tonsillar descent remote diagnoses from Gilete, seeing him in person in a month, and Bolognese has agreed to an appt. so pursuing both. How is your progress.. can you get to MRIs?
writing you a pm, so we are not going off topic too much when I am hopefully better on Monday! ty!
 

Rlman

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I'm having a hard time understanding how the GrabbOakes shows brainstem compression if over 9mm. I would have thought a shorter distance between the axis and dura would make the ventral brainstem compression more likely in flexion or extension compared to a longer distance. But i'm probably misunderstanding something.

I also read somewhere that pannus helps soften the impact on the brainstem lessening damage to it. Can try to find that source.
 

Hip

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I'm having a hard time understanding how the GrabbOakes shows brainstem compression if over 9mm.
Have a look at the Grabb-Oakes measurement in this image (it's the yellow line):

1566401461950.png

The longer the yellow line, the more the odontoid (dens) is tilted towards the brainstem, thereby compressing the brainstem from the side. The odontoid is that finger-like bone located underneath the lower part of the red line.

Also, the black area just to the right of the odontoid is a ligament, and if this ligament swells (eg, due to pannus), it again increases the length of the yellow line (the Grabb-Oakes measurement) and thereby further places pressure on the brainstem from the left side (in this image).


Dr Bolognese in this 2014 video at 11:33 says that the Grabb-Oakes line represents the sum total the tilt of the dens bone towards the brainstem, plus the thickness of the adjoining ligament (some diseases caused ligament thickening). It the tilt is significant and the ligament thick, it impinges on the brainstem.

Dr Bolognese in this 2015 video at 13:49 explains that the ligament can become thicker in rheumatoid arthritis due to inflammation (this is called pannus). In connective tissue disorders, this ligament can become thicker due to the fact it is weak, and so tries to grow larger in an attempt to gain strength.
 
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Rlman

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@Hip wouldn't the yellow line be shorter if the odontoid is tilted to the brainstem vs if odontoid straighter? i get that if ligament swollen the distance would be bigger.
 

Hip

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@Hip wouldn't the yellow line be shorter if the odontoid is tilted to the brainstem vs if odontoid straighter? i get that if ligament swollen the distance would be bigger.
No, because the red line is drawn from the bottom right point of the odontoid bone, to the tip of the clivus bone, as the image below shows:

Grabb Oakes Line (in black)
Grabb-Oakes Line.png


So as the top tip of the odontoid tilts towards the right, the red line does not move, but the Grabb-Oakes line measurement increases.
 

Hip

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Is this correctly placed for the Grabb-Oakes measurement?
Are those lines you have drawn yourself?

It looks right, but I have no knowledge or expertise regarding the correct placement of the anchor points of these lines in the various CCI-related measurements. No doubt there are a lot of subtleties to the art of correct measurement that only a seasoned expert would know about. I would not be confident in getting this things right. Although I think the lines drawn in your MRI look roughly correct.
 
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@Hip
Is this correctly placed for the Grabb-Oakes measurement?
The green line measures 9.2mm.

View attachment 34268
Hi @carataylor I dont think your measurement is right. You measured the distance to braindstem. That means including all the fluid between. That is not how its beend done, I think. Hard to figure out in your image, but the line should ends with the ligaments around the odontoid, as you can see here for example:
61814636_10101552529624992_4076526925772750848_n.jpg
This image is done t2 weighted, The white around the braindstem is fluid. Your image is t1 weigthed. Thats why its hard to say whats the fluid, but I think, your ligaments arent thick and theres some fluid between ligaments and brainstem. Arent't there any t2 weigthed images on your disk?
 
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I made some very rough measurements of my Grabb Oakes line and Clivoaxial angle and they both seem to be borderline. This is from a 1.5T supine MRI.

The Grabb Oakes is about 6.7mm and the Clivoaxial Angle is 138 degrees, which are both in the borderline range.

Does anyone think these measurements are reasonably accurate?
 

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I made some very rough measurements of my Grabb Oakes line and Clivoaxial angle and they both seem to be borderline. This is from a 1.5T supine MRI.

The Grabb Oakes is about 6.7mm and the Clivoaxial Angle is 138 degrees, which are both in the borderline range.

Does anyone think these measurements are reasonably accurate?
How did you measure on your own?

I was told by the physician at Regenexx that my Grabb Oakes is 9mm in flexion. I have neck pain, feels like it’s sinking, and spasms in my scalenes, pecs and thoracic spine. Cervical Prolo made it worse.
 
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@bread. I am moderate / severe.. housebound, spend all day in bed. But can leave house for appointments and occasionally go for lunch. Am always in a zombie state so if I do anything it’s just ignoring symptoms as best I can. I have couple months long periods where I don’t leave house.
I am housebound as well. I got much worse following cervical Prolotherapy.
 
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My question was by which measure(ment)s do you have horizontal instability that worsened with vertical traction. CXA? Grabb? BAI?



I know



This is me paraphrasing the surgeons. Traction is the strongest sign a patient will benefit from surgery and which symptoms will likely improve, not measurements. That is all I was saying and I am pretty sure this comports with what you were pointing out, too.

I said likely, which is not the same thing as certain.



Benefit does not mean miraculous improvement. It just means that the surgery improves people’s symptoms, as designed. The ME piece of this is orthogonal as we were not an explicit patient population for this surgery until very recently.

There are now three additional patients who have had remission and two others who have made significant improvements.

Anyway, I think we are paraphrasing the same surgeons, so I am not sure what we are disagreeing about.

The fusion prevents motion across all planes of movement, so I cannot see why it would not benefit instability in any direction.

In your initial post you said “only people with vertical instability” will benefit. This is what I was responding to. In your subsequent post you said “the improvements will be to a different degree on average.” The latter I can understand.
My Grabb Oakes only shows instability in flexion of 9mm. I have EDS. Severe neck pain and spasms in my thoracic spine, bedbound. Traction in the past, as well as neck brace, made me worse. But I can feel my neck go out of joint, hard to hold head up, no range of motion, trigger points, etc. Unsure what to do?
 
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It is so difficult to judge what is life threatening with this, also with every little movement if the head I get burning sensation and pain, again I am completely bedbound, seems hopeless.
Hip, sorry you are going through this. I am completely bedbound too after cervical Prolotherapy for instability.