• Phoenix Rising needs funds to operate: please consider donating to support PR

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

Messages
33
Likes
40
I may be wrong but I feel like in my video conference with Dr. B, he may have said that my measurements were not meeting the first threshold for surgery. He then talked to me about invasive traction, but also a lot of other things and I had a very poor connection, was trying to take notes while on the cell phone video call and I could be mistaken. But I wondered about this later when I hear of people who were not admitted because of their measurements.

I do not know what my measurements are/were.

He did say that patients with my profile, who have a good result during ICT have an excellent response to surgery (so I don't know all the factors). He also said that no matter how bad someone's measurements were (bad, meaning needing surgery) - that if the ICT was not successful, then they will not go on to have surgery. So I gather from his perspective - and what he told me - that is the second and most important threshold.

Argh. Hope that made sense.
I wonder about traction for those of us with EDS and CCI. With lax ligaments, stretching and traction can make them worse (as it does for me)?
 
Messages
88
Likes
134
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.
You need the MRI file which is in DICOM format. I got it on a CD which I copied to the computer. I used a software called RadiAnt Dicom Viewer to draw the line and calculate the angle. It's pretty easy to use.
 

StarChild56

Senior Member
Messages
1,403
Likes
3,667
I wonder about traction for those of us with EDS and CCI. With lax ligaments, stretching and traction can make them worse (as it does for me)?
I have hEDS. Manual Cervical Traction with a skilled PT, under strict instructions from my specialist, were incredibly helpful pre surgery.
Post surgery, myofascial work, scar break up massage, careful additional PT exercises have been incredibly helpful.
 

Tella

Senior Member
Messages
270
Likes
157
I don’t think he’s booked that far out. My husband and I had lots of puzzle pieces to work out and we are preparing ourselves for my post-op needs.
May I ask if u tried other treatments prior and why did u decide on this risky surgery? Thanks
 

ebethc

Senior Member
Messages
1,734
Likes
1,470
I responded well to non invasive cervical traction trials. Based on my age (55), the numbers of years I’ve been sick (18), and the severe kink in my medulla I decided that surgery was the best route for me.
Did you get manual cervical traction from a PT?
 
Messages
53
Likes
128
I think I read this somewhere but does Dr Bolognese look at scans for free?
He will look at them for free to let you know whether he will accept you as patient or not, he will not interpret the scans for free. From my experience. Videoconference if he accepts you is $300