According to some article referring to the one above, (Flat Neck Syndrome Causes and Treatment): [Because of the military neck, ] there can also be increased flexion (forward bending) at the joint between the skull and the first bone of the neck [C1].
It seems that people with elongated styloids, especially if they are less angled from the cervical line perspective, are more vulnerable to this, as they can bent the head more…
Now, I started to think if that might be egg-and-chicken problem to some extent… Is that styloids affecting everything more for people with straight neck, or the styloids become longer/thicker as a kind of self-protecting mechanism to prevent their head from being over-flexed, and after becoming longer they ram into the C1 stopping the head from over-flexing…
Kind of makes sense that styloids become elongated for those who have EDS or had a whiplash, as it would protect the head from over-flexing.
I had a cervical spine x-ray 33 years ago and the doctor said I had military c-spine. My doctors also have wondered if I have Ehlers-Danlos but I haven’t had the testing. I have almost every clinical sign/symptom. And I have elongated/calcified stylohyoid ligament . And cricoarytenoid joint arthritis.
I have verified CCi/AAI with cervical lordosis (and bulging discs plus lumbar scoliosis) and presumed EDS as well as strong suspicion via venogram of Vascular Eagle’s. I have elongated styloids, with one entangled in my carotid. I also have a stenosed jugular due to entrapment by my omohyoid muscle.
Hard to say how or of this relates. I think I’m mostly just the least lucky person on earth, but sharing since you’re interested.
You are good at hypothesizing, vdm. I have really appreciated your medical insights & thoughts over the time you’ve been on this forum. It would be so great to have some conclusive evidence as to cause & effect w/ ES regarding areas as significant as the cervical spine. Maybe one day that will happen.
I joined this forum a year plus after you so you’re situation is new to me. I gather from what you said that you haven’t had ES surgery. If your pain is unmanaged, & you’d like to pursue that option, we have many new doctors on our current US Doctors List. The ones from your state don’t seem to be very helpful but there are others in surrounding states who are. We also have a member - Snapple2020 who has ED & is very knowledgeable about it. She has had her styloids removed. You can search for her posts as they are always informative or you can send her a private message.
We look forward to hearing from you again. It’s always nice when former members come back to chat.
I hope having those styloids removed makes a HUGE difference for you, kforssen. You’ll certainly be giving your surgeon a challenge with all you have going on! Do you have a surgery date yet?
HI Willis,
There is a good book that is low cost called “Joint Hypermobility Handbook” A guide for the issues of management of Ehlers-Danlos Syndrome Hypermobility. It really connects the dots of all kinds of odd symptoms that you would never connect to each other.
After decades of use, EDS patients tend to have early onset osteoarthritis and osteoporosis. I’m in that group now at age 65. I found out in the past couple years, I have severe osteoarthritis in my elbows (and jaw). My elbows frequently dislocate when I even try to vacuum or pick up any substantial weight and rotate. Ive had multiple hand and wrist surgeries…mostly from ligament tears and scar tissue causing nerve compression. Years of neck instability and headaches. The joys of having EDS. I have no doubt there is a subset of Eagles patients with EDS as well as TMJD/ neck/spine problems. Dude posted an article recently about a study out of Belfast (2012) that found ossification of styloid and ligaments in multiple generations of a family. Not all had ES symptoms. Very interesting. Sure wish some doc would do a study on Eagles.
Thanks for this, Snapple! I do believe I have several conditions that are related. I’ll check out the book you recommended! I’ve had over 20 surgeries. Right now I don’t have a good medical team. My internist doesn’t want to evaluate me for EDS (seems he could at least run the initial labs). I could go to Houston, but there aren’t good experts on my insurance plan, and that’s 2.5 hours away. I’m not able to drive that far, so would have to get a driver. The wait list is 18 months for those in Houston who treat EDS. My best medical care plan is to do as much with lifestyle choices as possible and less with medicine and surgeries. Every surgery I’ve had ended up with worst case issues, so I’m not eager to go back into surgery!
I’m sorry to read about your negative surgical history. Part of it may be from doctors who weren’t well enough educated about your health challenges to do surgery the way your body needed it to be done & part from your body’s reaction to each surgery.
Some bodies go way overboard to repair surgical damage & thus create new problems while others can stop short of an ideal recovery. We always hope for the perfect physical response & recovery after surgery that allows us to live as close as possible to the way we did before surgery was necessary.
Just know that whatever path you choose for your health recovery, we’re here for you.
Thanks, Isaiah_40_31! Probably the main problem on MY end of surgery is that I have an exaggerated inflammatory response post-op. And the problem on the part of my surgeons is that they believe their skill set is better able to handle my situation than former surgeons and so they get too confident. That delays treatment for post-op complications. That leads to more hospitalizations and home healthcare. RSD/CRPS that gets angry. Flare-ups from PT/rehab. Those sorts of things. The doctors really should try to put together the puzzle of my medical history rather than fracture it more. I have a good handle on medical knowledge and presenting them with my med history in a way to squeeze in as much as possible during short visits. When I went to three different doctors for the Eagle syndrome, they said I definitely had it but unless I felt like I couldn’t make it through the day to forget surgery because the success rate was 50%. (I know those statistics are incorrect, but considering my body’s response to other surgeries, I decided not to pursue it.) You guys are awesome at support here! Thank you!
Your situation is definitely a frustrating & puzzling one as far as how to provide proper treatment that will somehow circumvent the post op inflammatory response. There must be a doctor who has experience with that, but finding that doc will be like the proverbial “finding a needle in a haystack”. That said, I will pray the “needle” will be found so you can proceed with the best options for your medical care.
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