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Thank you! So the grabb oaks measurement that I am doing is actually measuring the movement away from C1 and outside the basion(?), not a “retroflexion” of the odontoid. It is moving toward the spinal column because all the ligaments are not there to support, and not from it being retroflexed?
It’s interesting you mention the collar. I’ve though about going and getting one. My first thought has always been I wish I could hang from my ankles it would make my neck feel so much better! It would kill my head and probably cause one pounder of a headache. I catch myself grabbing my jawbone and pulling my head up to decompress all that is going on in my neck. It helps pain quite a bit. Can’t hold my arms up like that for very long though without them falling asleep. The collar seems to help though you though? I’ve been a little worried about the rigid collar hitting my “soft spot” from decompression. Sometimes when I wear a ball cap or head band I get a fluid collection and a headache.
The NS did order a CINE MRI and a separate study of xrays in flexion and extension after I persisted. I don’t know that the CINE was specifically in flexion though. He’s not done that in the past.
Thank you Barbara, I think we were posting at pretty much the same time! 🙂 It seems that my symptoms are worse, to include then pressure at the base of my skull when I tuck my chin. Rotation to the left seems okay, a strain to the right of my neck and pain, but what is most noticeable to me then is it feels like I can feel my heartbeat in my head. I can barely rotate to the the right, but it is much sharper pain.
I understand (and appreciate) your knowledge and research. I have read everything I can get my hands on to try and understand. I need to learn and wrap my head around this, I have pretty bad anxiety so learning about it and feeling like I know enough to ask the right questions and be proactive in my care is important to me. I have contemplated writing to the radiologist and asking them specifically for relevant measurements from both the 2012 and 2014 images. I don’t know what good that would do though, except I’d know.
You’ve had decompression surgery? When was yours? Did you have relief?
Thank you for responding Barbara!!
No I didn’t have a fixation surgery, I didn’t even know of such a thing when I had my decompression surgery. The NS assures me that my symptoms are not related to the Chiari because there is sufficient flow at the decompression site. It seems to me though that some of my original symptoms are worse now than before surgery (ringing in ears, headaches (pain and frequency) and neck pain, nerve pain. Plus now the swallowing is an issue as well as insomnia, heart palpitations, dizziness, balance…What do you mean instability? How can you tell? Is that what makes a retroflexed odontoid? Or is that separate. I’ve been trying to figure out how to measure the odontoid. I found a pretty good study online that shows a Grabb-Oakes measurement, when I follow that and measure the MRI from 2012 it was 9.3mm and the one from this year is 11mm. I may not be measuring right, but did measure both images the same. Is it normal for it to continue to worsen?
Until October, I was cycling 20+ miles per day and enjoying long rides on the weekends. I’ve never had heart issues and aside from this am relatively healthy. I’ve also noticed weakness in my arm strength and my legs feel sort of heavy, but I was figuring that was atrophy from not being able to ride/exercise.
Thank you again Barbara! Your response and help is very much appreciated!!
