What is your experience with X ray flexion/extension films and their accuracy of diagnosing craniocervical instability?
I got a call for a cancellation in the pain clinic today. I went in and voiced my concerns about CCI and told them about how the cervical collar is helping me. The doc said that wondering about instability was reasonable. She referred me to a spine NS, put a hold on the cervical epidural steroid injections until the NS sees me, and ordered the aforementioned flexion/extension x ray. I got the radiologist's report back for the x ray and this is what it said:
A plate and screws are seen along the occipital bone. The alignment of the cervical spine is normal. Vertebral body heights and intervertebral disc spaces are maintained. Flexion and extension views demonstrate normal motion. No abnormal translational motion identified.
Obviously I have a real problem going on, so I was surprised that nothing showed up in the films. I also noted that they didn't pick up on my bulging disc at C5-C6, which should have been slightly different even on an x ray I would think.
I don't know what to think and I'm slightly worried that the spine NS will write me off with this result.
What have your experiences been with this type of test?
Donna, there are so many different types of CCI, and only a very limited amount can be seen with xray- if any at all. X-rays are worthless to diagnose CCI. You need the flex ext Mris to see the precise amount of abnormal movement/translation, and rotational CTs to see if C1 and C2 sublux. Even with the Mris the radiologist may not diagnose- there are so many measurements and angles to do- I think it is beyond their normal scope of work to read into all the types of CCI. My MRIs were read as normal in regards to CCI, but they are not I have significant amount if movement forward and backward 6mm plus basilar impression. I asked a spine clinic in my town about how they diagnose CCI and they they don’t, it’s an issue for a surgeon. You are going to need to get to an NS who specializes in CCI.
These are a few that I think treat CCI:
Henderson, MD
Theodore, AZ
Frim, IL
Rosner, NC
TCI, NY
Someone at Georgetown
Jimenez??
I agree I think you should watch Hendersons videos at CSFinfo.org under metropolitan area, Theodore has a great video to.
I’m so glad the collar is helping!! Can you take a muscle relaxer at night to help with the neck strain?
Hugs, Jenn
Thanks Beeba and Jenn!
I was hoping that you would say what you said about the x rays - I was thinking that must be true too. The doc that ordered them was just an interventional pain doc. She hadn't even heard of flexion/extension MRIs or other more relevant tests, which I was not that surprised about. I went along with the x rays b/c I figured if they did show anything it could help my case.
I have watched the videos that you guys recommended and found them very informative. I definitely plan on busting out that information when I meet with the NSs (I am currently waiting to see Heffez in Milwaukee,WI and Hannah at University of WI Hospital NS - don't know much about him yet). Measuring the Clivo-Axial angle is the easiest - I got out a screen cap from an MRI back in August (all I have time to find at the moment) and a protractor and the angle between my clivus bone and my odontoid is 140 degrees - when I"m laying down. Henderson said that it often decreased 10 degrees when people with CCI stood up, so that could be something right there, as he said 135 was the barrier between normal and abnormal. The other measurements I'll have to leave to the professionals, as I can't pull accurate distances with this viewing software.
I'll also have to look into a CCI specialist. Frim is fairly close to me and he even takes my insurance. He would be a good place to start, but I'm worried he isn't going to be interested in me until I have some sort of imaging that displays instability. Has that been your experience or should I try to contact him now? It seems like getting the proper tests is like pulling teeth.
Jenn - I've been taking muscle relaxers at night, and its getting easier to sleep as I practice. : ) Even though I'm still working things out, I feel more rested, so I must be doing something right.
Beeba - I'll send you my email address. Thanks!
Thanks, Beeba. The films were very interesting - what a difference between upright and laying down.
I agree with your mom - this was the first time I used a protractor in 10 years!
P.S. I hope your husband has healed after his sun tan misadventure - I feel bad for the guy but that was pretty funny! Thanks for the laugh!
Oh my goodness! I have a million fillings even though I brushed my teeth very well as a kid! My dad had the same thing. The dentists always blame it on "acidic saliva" or something to that point.
How does EDS make you prone to cavities? I'm not quite clear on that.