NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › CCSVI › retroflexed odontoid
- This topic has 9 replies, 2 voices, and was last updated 8 years, 11 months ago by decompressed.
April 23, 2014 at 10:06 pm #694
Anyone with experience with a retroflexed odontoid who can give some advice…(most recent MRI pic attached).
…I had decompression surgery in Nov 2011 for a 9mm herniation. In the last few months I’ve had severe head aches, dizziness, palpatations, swallowing issues/choking, non-stop ringing in my ears, insomnia, to name a few. Additionally neck pain and minimal range of motion. This part never really got better, but I also have disc herniations/degeneration at c5/6 and 6/7. The neck pain has been really significant and never pain has gone from primarily bicep area to the entire arms…frequently going completely numb doing simple stuff.
I went back to see my nuero surgeon who said that my symptoms were not chiari related because he had successfully decompressed around the tonsils. I’d been researching prior to my visit and noticed the retroflexed odontoid and when I saw a picture I thought it look similar to mine. (Not near as severe as I have seen some) but I am wondering if that might answer some of my symptoms.
When I asked my NS about it, he initially said mine looked “perfect”. Then later said that mine is not as bad as some and most of the time those that are problematic cause a significant kink.
At any rate, slightly frustrated and just trying to learn. I think I am going to send my records off to the Chiari Institute to see what they think of the MRI’s and symptoms also.
Thanks in advance!
TApril 23, 2014 at 10:08 pm #4986
:ohh:Facepalm…wrong board, sorry!!April 24, 2014 at 4:47 pm #4988
Don’t worry, I post to the wrong topic too!
To address your MRI, I can see the area of decompression clearly at the back of your skull. I can also see a sign of what may be a instability between C1 and C2, I take it you didn’t have fixation surgery too ?
(UK)April 24, 2014 at 5:22 pm #4989
For the record I am not medically trained, just a fellow sufferer who’s been self-taught (out of necessity!) for the last 10 years and I have spent an awful lot of time studying Head/Neck MRI’s. These are just my thoughts on the matter:-
Many of your symptoms are typical of this type of instability, between C1 and C2, called atlanto-axial instability, i.e. the dizziness, head pain, neck pain, difficulty swallowing, tinnitus. The medical sign I see suggesting this may be the case, is the ‘V’ sign – between the front of C2 and the back of the anterior arch of C1, as I’ve highlighted in orange on your MRI below. Usually these 2 anatomical parts are quite parallel.
I need to ask a couple of questions:-
1. Are your symptoms worsened by rotational movement of the head ?
2. Are your symptoms worsened by putting your head into a chin-down position (flexion) or after being in a chin-down position?
Your odontoid is not overly retroflexed but, if there is instability in your upper neck, it will possibly be acting as a fulcrum, whenever you put your head into flexion.
Another thought on the matter is that, even though you have been decompressed, your cerebellar tonsils still seem to be clinging on to the back of your brainstem.
Hope some of this helps. I’m glad you’re approaching The Chiari Institute, they will be able to advise you further.
(UK)April 24, 2014 at 5:36 pm #4990
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!!April 24, 2014 at 6:00 pm #4992
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?April 24, 2014 at 6:11 pm #4993
By ‘instability’, I mean that the ligaments are not doing their job properly, i.e. they are not maintaining the strength of the structure. The ligaments should hold all the bones etc together, so that it moves as one unit.
I actually have cranio-cervical instability, where my head is not firmly connected to my neck, following a backwards fall years ago so, experiencing many of the symptoms that you do, rang a bell for me. I have to wear a philadelphia collar 24/7 (the conservative treatment!) to avoid or lessen some of the symptoms.
You may have had instability prior to your operation. Instability after decompresion can cause intermittent symptoms. Decompressions often address the immediate issue of ‘restriction of csf flow’ but unless combined with fixation, they neglect to address, or can even worsen any instability.
It’s often the case that whilst you are laid down, with your neck comfortably supported in an MRI, no signs of intermittent csf restriction would be visible. I think a good test would be a CSF ‘cine flow study’ MRI, with the head in flexion.
I think people are probably born with a retroflexed odontoid (or maybe the result of injury) I’m not sure. It’s just an anatomical difference. In a stable cranio-cervical junction, I can’t see that it would pose too much of a problem.April 24, 2014 at 6:29 pm #4994
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.April 24, 2014 at 6:38 pm #4995
I think the ‘grabb oakes’ measurement should always be the same, as the Basion should always retain the same relationship to the Odontoid (C2). So, if your measurement is changing maybe that’s a sign of instability too. Here’s another post on further defining Grabb-Oakes:
The cine in flexion, is my idea, I don’t think it’s standard.
My eye’s are shutting, so I’ll have to go to bed now, sorry!April 24, 2014 at 6:43 pm #4996
Thank you Barbara! You are the best!! I truly appreciate your help and guidance.
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