← Return to Head and Neck Concerns in EDS/HSD
Newsfeed PostNewsfeed Post in blog Ehlers-Danlos Syndrome
Head and Neck Concerns in EDS/HSD 4 days ago | By Samantha Campbell (@samanthacmaa)Comment receiving replies
Replies to "Hi @nial1n, I'm not a doctor, so take this with a grain of salt. You might..."
@colleenyoung, thank you for your reply & links. While I’d love to be able to speak to a Mayo EDS clinician, I don’t discount the knowledge of fellow EDS patients. We’ve had to become our own experts. I have suspected that the TMJoint is involved w/this. If not the tympanic bone. Possibly both. There’s several bones/joints that come off the temporal plate, especially in my problem area of right behind, inside & below my right ear. I have the dental manifestations (my teeth have 3 roots not 2 that are extremely long & the teeth are literally cracking & disintegrating w/out any cavities or other obvious, normal causes) & TMD symptoms. I have intermittent facial numbness & facial drooping on the right side w/negative stroke eval. So your links have merit. I have an ER visit follow up w/a hospital neuro, so hopefully this dr will listen to me & consider this research. God willing, he knows about EDS. It’s exhausting being complex, isn’t it? Thank you very much for giving me your time. I sincerely appreciate it.