I am 33 years old and living with severe vEDS. I am in palliative care, but loving life. I work in tech full time from home, have four cats and one dog, and a partner of nearly six years (he’s amazing). I love taking our dog out, popping wheelies in my pink wheelchair, seeing live music, dressing in all the cute emo/bubblegum goth outfits I couldn’t afford in the early 2000s and playing video games.
I was diagnosed with severe Eagle Syndrome earlier this week. I went to the dentist for what I thought was an abscess and he did panoramic X-rays only to uncover my COMPLETELY calcified styloid process and stylohyoid ligament. Entirely rock solid. It looks like I’m hiding a tube sock in my neck, and it’s awful.
Two weeks ago and then again two nights ago I passed out cold on my face. Two nights ago, I also dislocated my shoulder when falling and lost consciousness for over 2 minutes. Tonight, I wound up back in the hospital after stroke like symptoms came to play. Repeat imaging lead to the doctors there (very used to treating me for minor to major emergencies) telling me they’ve only seen ES twice before and it was nothing like mine. Why is mine so bad? Well, it’s been developing and brushed off as other things for almost a decade. What was intermittent jaw swelling after eating, intermittent headaches and sudden numbness is now 24/7 swelling, insane head pressure, headaches that feel like my scalp is on fire, redness, pain shooting down into my neck and chest, sore throat and a feeling of a foreign body protruding into my throat, numbness and tingling in my face/chest/neck/head, difficulty swallowing, difficulty breathing at times, periodic blurred vision (I already wear glasses), periodic difficulty talking, loss of range of motion in jaw (can’t open it even half way) and more. The severity seriously worsened this week out of nowhere and I can no longer ignore it. This is all terrifying because I’ve already survived three major arterial dissections I feel lucky to have lived through. I’m worried!
I am hoping to see one of the specialists listed on this forum next week. I spent all day yesterday and the day before calling local surgeons to no avail. Nobody will touch me because of my vEDS and half of them have never heard of Eagle Syndrome.
Tonight it was confirmed that when I abruptly turn my head to the left it compresses my carotid artery and causes the syncope and stroke like symptoms, so I’m gonna try to avoid that and won’t be driving until after surgery. I’m terrified. Surgery of any kind is extremely risky for me with vEDS and this is in a scary spot!
I am SO hopeful having found this forum. I felt so alone receiving a diagnosis nobody has heard of. Thank you to all of y’all that have so vulnerably shared your stories! It means so much to those of us still seeking help!