It’s been a long time! So earlier this week, JC had an appointment with Dr. Jason Foulds, a vascular surgeon at Vancouver General Hospital. The purpose of the visit was to assess him for TOS and other vascular compressions (imaging/diagnosis is pending, but likely to be ruled out).
During the consult, Dr. Foulds said that he has performed many styloidectomies for Vascular Eagle Syndrome (and that he considers that surgery to be easy peasy). He will only do the surgery when the styloid is poking into the carotid, so when an emergency is imminent. Because he’s a vascular dude, I doubt that he’s looking at the whole picture (such as taking the bone up to the skull base), and he cannot perform a C1 resection. However, he has an interest in outlet syndromes, so he could be a resource for people in BC. The waitlist to see him was ~5 months with persistent calling.
He had VES and had surgery for it last December (bilateral C1 resection and styloidectomy). On the rare occasion, he still has symptoms of venous congestion and what he says “feels like his head is in a microwave.” He gets the feeling of pooling around his throat and neck. He also has fatigue in his arms when he lifts them (for instance, washing his hair) but that could be PEM/MS, and not TOS (he doesn’t have the nerve symptoms, or pulse disruption). The surgeon ordered an MRA to assess flow rates which would help rule in/out any additional compressions that may exist, but we all suspect the results will point to something outside the vascular system.
@Val7426 I ask because I took a look through his scans that you uploaded when you first came to the forum. I noticed that in your last post there was still some left-sided issues - left tmj, left sided face pain. Also some narrow mouth opening and some eye symptoms.
It appears that his left greater horn of his hyoid is compressing (or at least pushed up against) his left ECA, just above the carotid bifurcation. Pain from ECA can radiate up the jaw and down the left side of neck, and even into left arm. Irritation of this area can irritate the sympathetic plexus, leading to same sided eye symptoms - blurry, focusing issues. Keep in mind too that this is him laying flat on back, and doesn’t even consider turning head or swallowing or opening mouth wide which could cause compression since the hyoid moves quite a bit.
Wow, okay, that’s a lot to digest, and thanks for flagging those potential issues. We know he could still have a mild left side compression, but a lot of this is new information to explore. I’ll have to compare the Sept 2024 images (pre surgery) with the April 2025 images (4 month post op). The good news is that the surgeon offered to review the MRA results with JC. Who knows when the MRA will happen because, you know, Canadian health care.
Right now, one of the pain mgmt doctors, CCI chiro, and the vascular guy think that his ongoing symptoms are coming from his neck. He was in a small car accident in summer 2024, and it may have had more of an impact (pun intended) than we originally thought. The C1 resection may have further destabilized the neck, leading to mild CCI. Even in a mild form, it could be causing him immense pain and a lot of these symptoms. That seems to be today’s consensus, but I am definitely going to run this by the doctor at the next appointment and get some feedback. Thanks!
I’d also be willing to take a look at the 2025 imaging if you’d like.
Getting hyoid bone syndrome diagnosed is even harder than eagle syndrome unfortunately. So hopefully the doctor doesn’t brush you off.
Most people don’t have bones touching their carotid arteries and his left greater horn clearly is, and he has left sided throat/neck/jaw pain. So if your doctor pushes back, just say that to them. Here is a research paper showing that hyoid bone syndrome commonly presents with elongated styloids / calcified stylohyoid ligaments. Take this to the doctor with you:
Thanks for letting us know the doctor’s name, always good to know of someone else, & I’ve added his name to the list. I’m sorry that JC is still having issues, but good you & doctors are working to still uncover the reasons for his symptoms
Will be interesting to see what the doctors say about his hyoid that @TML has spotted!
@TML sorry it took so long to get the file uploaded. I had a few false starts over the past few days and it would give me error messages. I’m still doing a deep dive with the hyoid and greater horn, it’s new territory to explore. The good news is that JC still has an outstanding referral to an ENT (from April 2025), so with luck, that will come through soon. The vascular guy was clear that he’s not a diagnostician, so I think the ENT is a better fit. Unless the MRA comes back showing compromised flow.
I note you are a fellow Canadian, and your profile says pending surgery. Did you find someone in Canada who will do it, or do you have to travel far? I wish you all the best with your upcoming surgery and with the recovery. With your symptoms, are they one sided, or do they express bilaterally? With JC, what he feels is bilateral. He senses venous pooling on both sides of the neck, from where the styloids were down to his clavicle, which makes no dang sense because his right side is clear, and there is minimal compression remaining on his left.
