February 10, 2017 at 8:26 pm #1085
I will try to keep it short.
Had a bike accident 5 years ago, with axial plus flexion impact on my head, developed heavy legs and atrophy, took numerous test later including EMG, missed odontoid fracture with nearly 10 imaging studies including MRI, CT, MRA. At the beginning it was mostly motor weakness. So, it was thought to be MND, then no doctor wanted to look at me any more.
On BiPAP NIV, paralyzed throat down, chewing is Ok. I still have high blood pressure (110-150mmHg), heart racing during sleep.
I had to start my own research but too late. Bed rest for nearly a year now, largely been improving, but motor still deteriorate very gradually. I highly suspect AAI due to retro-flexed dens.
Local doctors could/wouldn’t see anything from my MRI, I have mainly studied CT, CTA via DICOM, still not sure about MRI, which can contain sign of atlanto-axial instability.
Please help with below few slides if you spot anything.
Too weak to remove personal info, but it is Ok.
Thanks a lot!
I can help anyone with reconstruction in 3D Slicer if you provide DICOM format.February 12, 2017 at 3:04 pm #6095
I would like to help you improve your symptoms management, if I can. I will address each issue I find separately, as I don’t have much time. The first thing I notice is a possible torn Apical ligament. This ligament which joins the front of the skull opening (Clivus) to the top of the odontoid bone, is one of a group of ligaments that hold your head firmly to your neck, so it is quite important. The fact that you broke your odontoid shows that there were very strong forces acting upon that area, when you had your fall. It is quite possible that other ligaments within this group were torn too, so you might want to familiarise yourself with the anatomy of these and check through your other scan views. The way a torn ligament heals is by growing from each end, meeting in the middle, then tightening up (taking up the slack, so to speak) so it is very important to keep that area immobilised and in a good position, to give it chance to heal properly.February 12, 2017 at 3:23 pm #6096
The second thing I would like to address is your symptoms like MND (Motor Neurone Disease). I suffered a progressive decline in physical ability, that at one point I wondered if it was ALS/MND, so I did study this in some detail but it’s a long time since I looked into these (10yrs), so forgive me if I’m wrong and please feel free to correct me. I believe it’s the back of the spinal cord that’s linked to these symptoms, yes ?
Well in Cranio-cervical instability, the spinal cord gets stretched and squashed when you move your head in various positions (the worse usually being flexion – so avoid this at all costs). Either of these two mechanisms can injure the spinal cord, sometimes temporarily (where you notice intermittent symptoms). I cannot stress strongly enough that you wear a fully supporting collar – the best I have found for cranio-cervical support and alignment, is the Philadelphia collar – trust me, no others come near it. I have been wearing mine nearly 10 years and it’s brought great improvement!February 12, 2017 at 10:32 pm #6097
Thank you soooooo much for your help!
My m ain suspicion is AAI (atlanto-axial instability) /AOI as a result of old odontoid fracture from the accident.
My both VA and right ICA were occluded as a result, see attached. There are damages to my medulla and brain.
MND was originally suggested by local neurologists too, ruled out after seeing VA and brain images. Mostly I am improving, somehow motor is still declining very gradually, so yes, MND still a possibility. It’s the anterior part of the cord being responsible for motor functions. Other than MND, which can only be ruled out, rather then proved, I am more concerned about possibility of potential AAI/AOI related artery issue, no surgery done, so it may still not be stable…
Just can’t find solid proof, and hospital visits are too rough, so digging into my MRI files.
By the way, my odontoid retro-flexion might be an issued, I had strong electric shock while my head turning left.
You have been amazing in helping people with the most precious extra mile most medical practitioner fail to comprehend / address, thank you again for being an angle!February 13, 2017 at 5:39 pm #6098
No problem, happy to help when I can.
I’d like to address the issue of your ‘heart racing during sleep’. There are probably lots of possible causes but here’s a couple that spring to mind:-
1. Could it be a dysfunction ? – Autonomic dysfunction.
I too had this problem of seemingly inappropriate nocturnal tachycardia and I wondered if it was related to head position. I would wake up with my chin right down on my chest – a position I don’t ever recall being able to achieve before my accident and my heart racing. I’d also be cold, yet clammy. So, if you do wake with your head in flexion, could it be the retroflexed odontoid putting subtle pressure on your brainstem and causing autonomic nervous system problem ? A Philadelphia collar should help alleviate this. If you don’t wake up with your head in flexion, could it be a full bladder or something causing an autonomic dysreflexia type problem? or
2. Could it be a reaction ? –
I know venous drainage (from the head) takes a different path when you are laid down, imagine that this is not working properly and drainage is poor, it would raise intracranial pressure, thus making it more difficult to deliver oxygenated blood to the brain, the body’s other mechanisms for addressing this problem are, increasing blood pressure, or increasing heart rate.
I have to sleep sitting upFebruary 13, 2017 at 6:05 pm #6099
The 3D CT scan shows a subtle misalignment (annotated in green here) and I’m wondering if this is the result of a rotational injury, or indeed an instability of C1 and C2 (AAI).February 14, 2017 at 9:00 am #6100
I think your suspicion is correct. I have had to manage my Cranio-Cervical Instability (CCI, otherwise called AOI Atlanto-Occipital Instability) the ‘conservative’ way, i.e. with a Philadelphia collar (fixed to a body brace for quite a long time) in fact I still use a Johnson CTO (big metal head and body brace) as well on a nightime – the latter mainly to stop the pillows from pushing my head forwards. In the abscence of fixation surgery, you need to seriously consider this option, it’s vital you support this area and help avoid any movements that will exacerbate the already injured area.
Regarding the VA (Vertebral Artery) I had a suspected partial dissection of my left vertebral artery following my flexion/rotation injury and, as this artery threads up through each vertebrae, looping over the top neck bone C1 (Atlas), then into the skull, I can understand why this vessel is particularly vulnerable. You say your VA was occluded as well as your ICA (Internal Carotid Artery) and I can see them in the scans but I’m not used to reading these type of scans so, can you identify anatomically whereabouts in your neck/head these occlusions occur?
I also think you should consider how else you can mitigate these circumstances as much as possible, i.e. by regularly taking Omega 3, or other supplements that help to maintain blood vessels and circulation (if you’re not doing so already).February 14, 2017 at 10:38 am #6103
Thanks a lot! I’ve been laying in my back 24/7 with a towel under my neck for a few months now.
Regarding AAI, my odontoid is pretty thick and holding the atlas from slipping further, but retro-flexation hurts. I suspect it’s a type IV.
Regarding MRA/CTA result just look for where it’s not filled, 3d is much easier too.
I’ve also attached a 3d movie shot from 3d slicer. (the site does like mp4, I will name it something and try again. No.)
With accidents, things get missed a lot, just found my accipital fractures
Can you get an inclination bed if you can’t lay down? I find it helpful by standing me up.February 14, 2017 at 11:23 am #6106
2d MRA (black), CTA(brown)
Blood is so important, and it can easily get affected.February 14, 2017 at 1:52 pm #6107
No, I could actually see the occlusions, I just couldn’t work out whereabouts in your head, neck or chest they were, as there were no surrounding tissues to use as a bench mark.
I have a profiling bed which I keep in the head upright position and my feet have to be 6″ lower than my bottom, to avoid cramping and aid circulation, so I have a raised ‘wedge’ of foam underneath me.February 14, 2017 at 2:47 pm #6108
I rotated the 3D scan 90 degrees, to see it in better perspective. There also seems to be an irregularity here, on the spinous process of C4, where I have marked in purple. These spinous processes should all be relatively equidistant, held so by ligaments. I wonder, is that why you need a BiPAP machine to help you breathe ?February 14, 2017 at 5:43 pm #6109
This should help, they are in the neck and head, bellow are both VA going between C1 and above is occipital base.
You can see the dark outline of the upper body, the bottom is just above the heart.
I did have high CSF pressure together with hi BP. But laying in my back does not hurt, rather it helps, it’s laying side ways causing a spinning dizziness, and neck elevation affects figure strength. Pounding about meds mentioned here, maybe I should try it out.
I do have a collar you have mentioned, tried it for days, got a skin rush, so opted to lay down instead, lining with a small towel makes it too tight and suffocating…February 15, 2017 at 6:07 pm #6111
So the VA’s are occluded just inside the skull, after they have gone up and over C1, yes?February 15, 2017 at 6:26 pm #6112
Ah, I think it’s actually the skull itself that has crushed the VA’s against the upper surface of C1. It’s a very narrow area between 2 bones that are normally held rigidly apart. Looking at your 3D CT scans, there is something of a ‘cock-robin’ type appearance to your C1, it appears further above C2 than it should be at the back.
Can you show me 3D CT views of the left side and the right side, as if the view was taken from 3 inch above your shoulder?February 15, 2017 at 10:30 pm #6113
One up loaded fine, but it’s ligaments, not bones
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