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divinityrose (@divinityrose)

Hyoid Bone Syndrome

Ear, Nose & Throat (ENT) | Last Active: Jun 6 1:04am | Replies (22)

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@jenniferhunter

@divinityrose I read your story and you said this seems to come from an injury to your neck. Has anyone done an MRI of your cervical spine? I know from my experience as a cervical spine surgery patient that slight changes in the alignment of the spine can cause strange pains in the neck and head, and muscle spasms can cause shifting of the spine's vertebral bodies, the jaw, and how the skull sits at the top of the spine. I have had the occipital headaches you describe, and a tight jaw on one side. What you might want to consider instead of trying to label this as a diagnosis would be to work with a good physical therapist who does myofascial release and cranial work. You may want to see a spine specialists to either rule out a spine issue or find one, and it may be something that physical therapy could help. There may be a loss of normal curvature in your C spine due to muscle spasms. The chest pain and forward head position you describe possibly could be thoracic outlet syndrome. That is often worse on one side and I have that myself. MFR does wonders for TOS and it might be good to explore that even if you don't know specifically what is causing the problem. Posture is very important if you have TOS. You could see a vascular thoracic surgeon for a TOS diagnosis or a neurologist, but look for those specialists at medical centers that list treatment for thoracic outlet syndrome. TOS is misunderstood and not covered well in med schools, so it is difficult to find a doctor that understands it. Scars and surgical scar tissue as well as injuries create restrictions in the fascia that hold our bodies in an out of alignment position. If I raised my arms or turned my head a certain way, my hands would get blue and cold because I was cutting off the circulation because of TOS. There are compression points between the collar bone and rib cage for TOS and it can pull the scapulas forward and to the side rounding your back. My PT has gently adjusted my hyoid bone a few times. I am much improved because of physical therapy.

Here are some links that may be of interest written for physical therapists in detail. There are several on this page for the shoulder, neck and jaw that you'll want to look at including an article on TOS. https://mskneurology.com/category/jaw-head-neck/

Here is our discussion on Myofascial release. There is a provider search on the MFR website.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Provider search http://mfrtherapists.com/

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Replies to "@divinityrose I read your story and you said this seems to come from an injury to..."

Thank you for that information and the links. I have been to neurologists, a spine specialist, and physical therapists (and caridologists rheumatologists and oral surgeons/tmj specialists) and had ct scans, mris, emgs, and xrays although no one has looked at the hyoid bone. The neck is straighter than it should be but evidently not enough for them to have much concern. They mentioned i could let them know if I wanted to look at pain management but then when I went back to talk about it the doc was like nah – and it was focused more on neck pain rather than the excruciating pain in my face, under my chin.

I will look more into TOS, because the weight of my chest is definitely rounding my back and shoulders. The physical therapy I've done multiple times did not do much for me.

At this point, I've seen many different specialists to try to rule out what the causes may be and there hasn't been a definitive answer beyond trigemenial neuralgia