Newly diagnosed after 7+ years of symptoms


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!


I really feel for you, it sounds like you have more than enough to manage with let alone vascular ES, you sound like a really positive person so I hope your strength will help you deal with this too…
Dr Hepworth in CO is very experienced with vascular ES, (but has quite a long wait time by US standards), Dr Hackman in NC is very experienced as is Dr Cognetti in PA, but I don’t know with any of them how much experience they have with EDS…
I’m glad that you’ve found the forum and I hope that it’s helpful to you…hugs & prayers that you get treatment soon :hugs: :pray:


@slekeille - I’m so glad your carotid compression has been diagnosed as your symptoms clearly point to that. I hope whichever doctor you see will immediately recognize the gravity of your situation & offer to do your surgery “yesterday” so you can get back to free wheeling in your pink wheelchair more safely. You sound like a very fun person. You should be able to enjoy your life to a much greater degree once that bony rod is removed from your neck.

Sending up prayers :pray: for you & sending you a healing hug :hugs:


I do not have the severity you do, but I also have Vascular Eagles with Carotid impingement. I have had several falls, and now use a cane on my “dizzy days”. I’m waiting for surgery. It has been such a relief to have the diagnosis after a few years of people telling me to reduce stress… (the medical gaslighting of women is real!). Please take care and be careful. The doctors also told me I’m not allowed to drive until after surgery, which is a pain but I guess makes sense.


Thank you so much. Finding somewhere full of people that understand what I’m going through is incredible - especially given that until a few days ago, I had never even heard of ES. I literally got the notice that I’d been approved as a member here and wrote this post on the way home from a long night-into-morning in the hospital as my partner drove. I got some rest, and today I’m playing video games and resting more, but I am exhausted and scared. I met with my PCP virtually today and my palliative care NP comes to see me Monday - I am just doing my best to hang in there until I see a specialist (probably Dr. Hackman in Chapel Hill).

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Thank you so much. This is overwhelming - but having this community to turn to is incredible. I (and everyone else in my life, including most of my doctors) have never even heard of this condition. My cardiologist was actually familiar (saw him yesterday) which was nice! He can’t help, though. It’ll be a wild ride to see if any of my years-long cardiac symptoms have been CAUSED by this. I hope you are well!


Oooh boy, do I understand that. I spent so many years being told all of my pain and suffering was caused by my endometriosis - and then I had a spontaneous arterial dissection and almost died. Bam, vEDS diagnosis and suddenly, everyone started taking me seriously for every little pain. I hope you are doing well as you can be, and surgery comes soon!