@Chrickychricky - I see us as one giant team all helping each other! We couldn’t do what we do without our members’ contributions.
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I have a significant update after meeting with Dr. Trites, ENT today. He identified IJV compression C1/transverse process and advised he needs to consult Neurosurgery because he does not do C1 shaves. It also became apparent that he does not seem to be an expert in Vascular Eagle Syndrome. He advised he does not resect to the skull base and leaves some of the styloid process intact. I am overwhelmed. I don’t know if Neurosurgery can help me. If they can’t I don’t know who in Canada can do the necessary surgery. Any info or support is appreciated. I am at a very low point today. Dr. Trites literally walked out of the room on me when I asked for dynamic cta/ctv imagining and wouldn’t order it. I feel so alone today. 5.5 years and still no relief on the horizon is crushing my spirit.
I’m so sorry to hear about the way Dr. Trites treated you! Previous comments about him have been very favorable.
Most doctor do leave a little of the styloid (.5 cm - 1 cm) behind as cutting it flush with the skull base can damage the facial nerve. It’s when a surgeon leaves 2 cm or more that some people continue to have symptoms. Did Dr. Trites mention how much styloid he leaves behind? I was thinking that at least one of the other members who’ve seen him for surgery had vascular compression, but now that I think about it, it may have been carotid compression which is further from the skull base. That makes it easier to deal with surgically than jugular compression up close to C1. I’m glad that Dr. Trites didn’t offer to do your surgery if he isn’t experienced with doing jugular decompressions/C1 shaves.
Before you get too discouraged, Dr. Trites did say he’d consult Neurosurgery for you so hopefully there will be someone in that department who is more capable of helping with IJV decompression. If not, are you able to travel outside of your country for surgery?
There is a surgeon in the UK & one in Turkey, plus several in the US who could help you, however, the cost to have that surgery in the US would probably be prohibitive. UK maybe a little less so, & Turkey is the lowest cost but requires extensive travel. Several of our CA members have traveled to Turkey for surgery w/ Dr. Aghayev.
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Hi @Isaiah_40_31- Dr. Trites said he leaves 1-2cm. When I looked up the Neurosurgeons in Nova Scotia none have experience with IJV decompression (Vascular Eagle Syndrome). If that’s the case for a Canadian to get medical care in another province in Canada they have to get the specialists to write a request for an out-of-province referral. If there is no one in Canada a request can be made for coverage internationally. It may be I have a beauracratic mountain to climb and after so many years trying to get answers… the system might have beaten me down enough for me to just give up.
I felt gaslit by the medical student and resident and then again by Dr. Trites who appeared shocked the vascular compression was not noted by radiologists on my previous scans. He did not seem to think my 2024 CT scans needed to be redone or a CTA/CTV was necessary. This lack of knowledge didn’t give me confidence in him. He couldn’t explain why my neck has formed scar tissue and simply said, "I don’t know."Also his surgical approach is only by hand and he doesn’t really get a good look and does everything blind (is this normal)? I also don’t feel super confident in him because he literally said he hadn’t heard from many patients he performed styloidectomies on, caused a stroke in one women and didn’t appear to be proactive in follow up care.
I guess I have to wait and see for now… but I dont know if he referred me to Neurosurgery, if he is just consulting Neurosurgery or if he placed me in an administrative abandonment situation. I am not in a good place given the medical negligence I have experienced for 5.5 years. He did offer styloidectomy but was not confident that would resolve my symptoms fully.
Thanks for replying.
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@Jess1 , I am so sorry you are going through this. Reading about your experience with laryngeal spasms and that feeling of your air being cut off sounds incredibly frightening and exhausting. It is heartbreaking that even simple, everyday things like talking or brushing your teeth have become triggers for such an intense physical reaction.
I also wanted to mention that I’ve been thinking about the role your nerves might be playing in all of this:
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Vagus Nerve Sensitivity: The spasms you’re describing are often linked to the vagus nerve, which controls the muscles in your larynx. If that nerve is hyper-sensitive, it can cause the airway to overreact and ‘shut’ as a protective reflex, even when there isn’t a real threat.
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The Phrenic Nerve and ‘Pulling’ Air: The difficulty you have pulling air down into your chest could be related to the phrenic nerve, which tells your diaphragm to contract. If that signal is being disrupted by tension or guarding in your neck and chest, it can make every breath feel like a manual, heavy task.
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The ‘Fight or Flight’ Loop: When your breathing feels restricted, your sympathetic nervous system stays in a high-alert state. This can create a loop where the anxiety of not getting enough air causes your muscles to tense even more, which unfortunately makes the breathing harder.
It sounds like you are stuck in a cycle of having to fight for every breath, especially when you describe having to ‘work hard’ to pull air down into your chest and neck. That kind of constant physical effort must be draining, especially when you aren’t getting the relief you need at night due to your breathing stopping in your sleep or becoming harder when you lie flat.
I can completely understand why a re-deviated septum feels like a low priority when you are dealing with spasms that stop your breathing entirely. You are managing so much at once, and I just wanted to reach out and acknowledge how much strength it must take to navigate these symptoms every single day. Sending you a lot of care and letting you know you’re not alone.
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I’m so sorry that Dr Trites wasn’t helpful, the situation in Canada is unbelievable, I mean it’s not great in many countries but Canada is particularly bad!
Maybe some of our other Canadian members who have had treatment abroad can advise you if there’s any chance of getting funding for this, @Val7426 , or @Luba ? If you don’t get answers here you could try the private message thread for Canadian members…
It doesn’t instill confidence hearing his surgical technique, I guess if he’s you’re only chance of having surgery it might help some of your symptoms, but it’s a gamble and you could end up with more scar tissue which could cause more symptoms…
Sending you a hug, you’re in a tough place 
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@Jules I am. Very scary place to be. Thanks for your suggestions and support.
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Hi, my Blue Cross would not cover any abroad expenses. I have got my surgery in Winnipeg covered by Health Card.
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Ah right, sorry, I was remembering wrong!
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Thanks for sharing your experience.
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@VisibleEvidence - Both @Luba & @Siren have had surgery w/ Dr. Viallet in Winipeg. Luba had a good outcome & Siren just had her surgery. If you’re able to see a doctor outside your province (even if it requires “getting permission”), he might be a good one to at least discuss your situation with. Dr. Pereira in Toronto also deals w/ vascular ES, but I think it’s more by putting in stents, however, some of our CA members have had consults with him regardless. Perhaps he has doctor resources now that he didn’t used to have since he’s seeing so many more ES patients who have IJV compression.
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Maybe. Thanks for these doctors names. Has anyone had the procedure required to decompress the IJV and styloidectomy in Canada?
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I don’t recall that they have. I think all have come to the US or gone to Turkey or England, but it would be an idea to ask on the private CA thread in case I’ve forgotten.
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I’ve never been evaluated for one but my older brother was tongue tied and has that released as a baby. If I do have one, it’d be mild enough to fly under the radar. Which doctor helped you determine you had a tongue tie and also released it?
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Thank you for this incredibly detailed response! At this point, I also think it’s a nerve issue but it’s hard to convince doctors of that. My left IJV is compressed; when I tuck my chin to my chest, both internal jugular veins close. So I’m thinking it’s connected to the compression but two of the doctors that could do that surgery (Cognetti and Nakaji) aren’t sold enough to do it yet.
I haven’t looked into the phrenic nerve yet so I’ll research that too!
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A PT actually diagnosed the tongue-tie. You can just google it and see how to assess yourself. You can check out www.zaghiMD.com for more info. He released the tie and then I saw someone else for myofunctional therapy. Mine was a grade 3, which is a very strong tie but no one caught it because somehow, I didn’t develop a speech impediment. Since the tongue never sat in its proper spot, at the roof of my mouth, my palate ended up being very narrow and which is why I did palate expansion to create space for my tongue to rest. Once the tongue rests in its natural position it no longer obstructs the upper airway and breathing becomes much easier, especially while sleeping, Hope that helps.
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It doesn’t seem to be something recognized in Canada and more emerging research is being done in the States. Maybe Canada will catch up 
I can say that my previous ENT was unphased by my squished left jugular vein between my styloid and C1. However Dr Cognetti acknowledged it, though at the time in 2022 he was not aware as to why it causes pain.
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It is so hard to hear that this is the case. It is surreal. The pain is undeniable and other symptoms distressing. It is so easy to believe it’s psychosomatic due to the lack of understanding. I hope our suffering and advocacy will bring about change 
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I am so sorry a surgical path isn’t being offered to you right now. Why aren’t these physicians convinced in your case? If you have the capacity to talk about it. I know it’s hard.
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Feel like I need to clarify. Dr. Trites was/is helpful. He diagnosed Eagle Syndrome and IJV Compression and referred to Neurosurgery for an opinion and when I read my consult report ordered a 3D CTA. That is a lot. He may not be the best surgical option for me nor would our Neurosurgeons in NS. I am going to ask to be referred to Toronto for an opinion and also to the US - Dr. Hepworth in parallel for a second opinion. It all comes down to what the NS and Toronto doctors offer. Making a claim no adequate medical solutions exist in Canada to get public funding for a international procedure will be almost impossible so my hope is Toronto can help. I don’t want Dr. Trites to be thought of as not an option for Canadians because he CAN and DOES do styloidectomies and if your case isn’t too complicated his surgical approach may work AND he diagnoses Eagle Syndrome.
He is also the only doctor in 5.5 years who looked at my previous scans and interpreted them himself. That is above and beyond what any other physician has done for me.
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