A friend of mine posted in the fb group EDS- Cranio Cervical Syndrome and Related Disorders about cranio-cervical instability (CCI), and I think it deserves it’s own post over here.
Is there anything you wish you had known early on in your cervical instability – something you wish you had done, a doctor you should have gone to? I feel like my neck is getting worse every day, not sure where this vertigo is coming from, and not sure what to do next. (dxd hEDS and POTS)
My reply:
I’m still fairly new as well, but I will share what I’ve learned and would tell someone even newer to all this than me:
- Learn the anatomy of the region, fully understand what CCI & AAI (atlantoaxial instability) & cranial settling & spinal cord compression & (since it’s so commonly comorbid, Chiari, and prolly CSF leaks or pressure issues as well) entails
- That it can be related to posture issues, including forward head posture, which PT can help a lot with.
- That instability there is connected to thoracic instability. Thoracic gets less attention but it can exacerbate CCI.. and sometimes fusion surgery for CCI/AAI can just shift the instability down to the thoracic and lead to needing a fusion there too, which I think shows the importance of PT (which can’t keep everyone from surgery, but *can* for a lot of folks)
- To know the correct imaging that should be requested, if any (Upright MRI, Rotational CT) and that radiologists are useless with this and the results should be sent to one of the EDS knowledgeable experts (Dr. Henderson, Dr. Bolognese, … and a few others)
- There are soooo many complications with surgery (my favorite youtuber and some folks I follow on the EDS instagram have gone through hell with theirs) that it should really be the most desperate last resort, BUT it can be absolutely life saving/changing for some folks, so it’s certainly not that it’s “bad” but it shouldn’t be tried before thorough PT (with a good/EDS knowledgeable pt, ofc) etc
- Dysautonomia seems HUGELY related to CCI/AAI for so many folks, and it seems to really get better after surgery for so many folks– but also bracing can be super helpful for that too.
- Cervical Spine issues can .. idk if “cause” is the right word, but can hugely effect TMJD. Mine has been horrific as long as I can remember, and since I made the connection this summer and have focused more on forcing my cervical spine into better posture and alignment and stuff, my TMJD is unbelievably better. It still pops most of the time, but the pain is pretty much gone, and the muscle fatigue is usually barely noticeable as well.
- Doctors who aren’t knowledgeable about EDS usually don’t even know about non-traumatic CCI. Like one ER doc i saw straight up told me that can’t happen without an accident or something. YET it’s not just EDS who is at higher risk for this.. Down Syndrome, OI, and I think arthritis, and others can cause it too (and of course other HDCTs (Heritable Disorders of Connective Tissue). Down Syndrome knowledgeable doctors are probably more aware of it too, but otherwise doctors are either aggressively ignorant, or, like my lovely GP, just apologetically ignorant (tho she knew to order the eds protocol at the “local” upright MRI place)
Yes, that was way too long for a facebook comment, but that is just a thing I do. But I figured I’d at least put it here, too!
