Looks like I have moderate CCI and I was told that if I remove the styloids in the neck then that would get worse. I get the thinking of that but I am wondering if anyone has any experience with that?
@pauld1635 curious how you were diagnosed with moderate CCI?
Had a DMX done
Where abouts did you have it done?
A chiro in Seattle. Then chatted with a Dr Centeno about it.
Great thanks! And out of interest have you had an upright MRI or just DMX? I’ve had upright MRI which ruled out CCI - but just curious.
@LimeZest Where did you get yours? What protocol? I had one in Canada which was subpar quality, now planning to go to the States to repeat it.
@vdm had it done in London at Medserena - i’m UK based. It was a FONAR 0.6T instrument. some T1 and T2 weighted scans, in full flexion, extension and rotation. Happy to send you my scans privately if you can pull any useful info out regarding protocol.
Tbh my old university has just acquired an 11.6T magnet - would love to see how good those scans on that would look
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On CCI/styloid instability topic- medics don’t yet understand this topic fully yet but US medic webinar did agree that in case of CCI & VES trying to fix VES first made sense to medics.
I had both CCI & VES before ops. C1/C2 fusion fixed instability. But did not help VES. Further ops for C1/styloid needed to improve VES. Still not fully fixed, but better than was. Take care. D
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Makes sense, i guess if you do have CCI and VES together, but arent sure which is causing the worst symptoms, Styloidectomy seems lesser of two evils. The caveat is that if the styloidectomy itself or just bed rest causing muscle wasting of stabilisers increases severity of CCI that could set you back.
Out of interest @PatientD you wrote before you think your CCI may have come from a severe fall at a young age as you dont have EDS, but did you have symptoms for the whole of your life or just recently?
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@LimeZest All good with the images, just wanted to confirm the protocol they used as initially I was planning to fly to London/Manchester for this scan, but then found one spot in Centennial, CO with Fonar. They do it slightly differently from MedSerena, so I’m trying to get as much from them as possible, perhaps adding something “outside of the standard protocol”. Definitely I’ll try to ask them to perform the left/right on me. What would be your thoughts on lateral neck tilting/shifting? How “rotated” rotated did you stay in the machine? Was it like, “please just rotate”, or “try your best rotate till the end of ROM”?
Re 11.6T, holy smokes. Though I’d perhaps never go into the scanner that is stronger than 3T, but that’s impressive beyond imagination. My tissue isn’t that good at dealing with significant thermal exposure and intracranial magnetic stimulation isn’t something I’d like to experience either, but it would be really cool to see what they can get from using it. I bet, the brain slices would be paper-thin…
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@vdm Ok great! If in any circumstance you do end up coming to the UK go to the London one, not Manchester. I’ve heard the scanning protocols are different and therefore the London scans are better but not 100% certain why.
So the scan was performed with a head coil in neutral, extension and flexion using some sort of headrest to keep head stable during the long acquisition sequences (approx 5 mins each per). I do not know how the headrest changes things, as in principle you are still under the effects of gravity but you are being stabilised to some degree. For rotation i was at end point again with a head coil and they basically lock you in that position with some pads inserted into the head coil. My feeling is they really know what they are doing, the radiographer who conducted the scan said to me they took the protocol from a US study but dont know which one. But Medserena is the place to go in the UK (and probably the whole of europe) to get assessed for CCI.
Also regarding lateral flexion, Medserena dont do this, i specifically asked if they would before I went as this is the movement which causes me the most pain and creptus/clunking. But (and i’d like to hear your opinion too) i feel if you have laxity in lateral flexion you might show this in rotation too as the alar ligaments contribute to both motions. This is why i’m not super confident about DMX, i know people use it but unlike upright MRI there are no standardised measurements or acquisition protocols and feels pretty subjective…but not an expert on this.
Yeah well i used to work at the University that invented MRI, some pretty funny videos in the archives of Sir Peter Mansfield conducting the first MRIs on himself. The 11.6T beast was bought to study the brain for neuron activity/functional MRI as you suggest
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Wow, didn’t know an MRI was used for that. I don’t even know where I would get a standing MRI. I don’t believe I have EDS. I think it stems from a car accident I was in a few years ago.
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I’d have to look up the name of the chiropractor place again but if you google DMX in Seattle they should be the only ones.
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This 
I also have exactly that, and all MRIs so far show Luschke joint hypertrophy at two levels bilaterally, couple of thinned and dried out discs, and arthritis bilaterally at one level of facet joints. And I suspect the Luschke ones are to blame, as they (I speculate) prevent the neck from nicely “gliding” at those levels laterally. But that’s exactly what I believe the science still doesn’t know 100%. It would make sense to have a DMX scan or just a good fluoroscopy performed focusing on those affected levels and observing if there is noticeable “click” (lacking smooth linear velocity) movement, but I guess nobody gives too much attention to such subtle things when there are cancer/dementia/Alzheimer’s treatment research financing options just waiting to be picked up 
Good point. I expect, especially under gravity, to measure at which points how much my neck rotates, and how much movement happens at the AO/AA joints, facet joints (esp. those with arthritis), and if there is some abnormal movement (e.g. I have a feeling that my neck doesn’t move smoothly to the left, but rather overrotates at the AA and (!) rotates to the wrong direction (perhaps in attempt to stabilise?) at some lower levels. It also might show whether there is some significant “jump” out of the “normal” (but what is “normal”?? I guess we don’t have globally accepted consensus yet) track of expected motion at various levels… Basically, I want to perform an “experiment” and collect as many data points as possible to hypothesise further.
Because, honestly, I’m really p***d off (pardon my French) when radiologists just drop a few lines about “osteophytes”, “hypertrophy”, “arthritis”, but are not specific enough to draw any real conclusions how this particular individual defect might affect the biomechanics. Because hypertrophy of the same joint may have little impact on the rotation in one case, and if the same joint is hypertrophied just one millimeter left/right/inwards/outwards, or the shape of the hypertrophy is different, or the height of the disc is different, or neck curvature is different, the effect might be very noticeable.
That’s why I think DMX might be a good tool to catch these nuances, but then again - what’s normal and what’s abnormal? Maybe those who notice slightest imperfections in their motion really are “obsessed”? E.g. a kid might forget even a broken leg and just accept using the crutches for a while even without consciously thinking about them… Maybe some adults simply live with those defects and don’t think too much too, until one day they notice them and “can’t unsee” them anymore… Who knows…
Respect 
I’ve seen some of those videos, the image quality was terrible judged by today’s standards, but hey, if one had a tumor size of a fist, it would show
And lots of thanks for telling about your experience in that Fonar chair. I had one done locally, but neither the quality was superb nor I got any comments on AA/AO. And then I was just ghosted by their radiologist (not that uncommon in Canada - a lot of medical staff keep enormous distance between themselves and the patients when it comes for additional comments. Perhaps some sort of insecurity about themselves, or just a bit of arrogance 
)
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@vdm - You make a good point here. Microchanges might also be very significant for one person but not another which is why it would be very hard to define “what’s normal” though normal in these cases is always a range.
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To answer earlier question My childhood fall did not seriously impact on my health until after 2014, and I was able to work until 2016. I am glad I was able to raise my children with normal health. But losing last decade of my career and all the health struggles since are very difficult take care. D
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@pauld1635
Did he tell you, that the CCI would worsen after the styloidectomy? That is what he said to me. But we did not talk about my symptoms and my upright MRI images were not good enough for him to give me a detailed diagnosis. My doctors at home diagnosed me with AAI and an instability at C4/5. I have a military neck as well. My Eagle surgeon told me, that he keeps the periosteum with the ligaments intact and only takes out the boney part of the styloid. I deeply hope that this will not trigger my instability. Where I live there is no more option for further diagnostics, so if you find out more about the question wether or not a styloidectomy causes the CCI/AAI to worsen, I’d be very glad if you could let me know.
Thank you very much and all the best for you!
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On earlier tmj guard topic in thread above, are so many guard types. Prosumnus guard (have website) is comfortable but costly. Was 2 guard types made by dentists recommended. If recall names will post here. Think guards on bottom teeth only were favoured by majority. Can be very expensive dental journey so do your research first. D
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Definitely interesting. I certainly hadn’t looked into the uncovertebral joints before but yes does look like they are involved in lateral movement. My CBCT scan says they all look normal but I do have a loss of disc height at C4/5 so it’s difficult for me to judge whether I have a problem in any of those. Either way I’m having a CTV next week to look for jugular compression which will be higher resolution to look for these things.
I agree most doctors and radiologists aren’t interested in subtleties, but want to fit you in a neat box. But the reality is we are all different.
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