@Minh2025 - Dr. Nakaji in Scottsdale, AZ, is a neurosurgeon who has done quite a number of styloidectomies w/ IJV decompression you could also get a consult with him. He does not require a referral.
•Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772
Thanks I will check him out… I think I would like a neurosurgeon with experience.. so the doctor in Arizona sounds like someone I want to check out… thanks for the help everybody.
Hey there! I’ve been procrastinating on posting an update in here because there’s just so much. And now I wasn’t quite sure where I should put it! LOL. And then just rereading a few things it seems like this is an appropriate place. At this point I am looking for names and contact information for some surgeons in the US. I was vehemently against that originally, being from Canada and appreciating our universal healthcare. But, I am now stuck in a loop here, and my issues being what they are, and rather complicated, I need to seek out a surgeon that has lots of experience and lots of success stories. One who basically is confident enough to take me on! I have found that the surgeons that I have dealt with here, and the variety of specialist, are seeing me as outside of their comfort zone.
I have been involved with the care team at Saint Michaels in Toronto. After really putting up a fuss I finally got a phone call from Dr Pereira and I have to say I was so very disappointed. I know we all have different experiences with different doctors, but I was astounded with how rude he was initially on the phone. I pretty much had to ask him to be nice and to stop talking to me in that manner; then he shifted and the conversation was just fine. Nevertheless, he let me know that I’ve basically hit the end of the road with him. Because of my circumstances, I am not willing to have a cerebral angiogram. It’s just too risky with me. I’ve had rheumatoid arthritis for over 40 years. In spite of my exercise and incredible diet my body is riddled with plaque and calcifications from the inflammation. I have had what my family physician diagnosed as a TIA and I am currently on statins and aspirin. Dr. Vanek, the ophthalmologist who works with Dr Pereira, agreed that I shouldn’t have the angiogram and suggested a lumber puncture. I mentioned this before and got some advice from you folks. Speaking with Dr Pereira, he said that that’s not good enough for him to give me a referral for the surgery. It’s frustrating because my CTV was so glaringly obvious with the bilateral compression but very severe on my right side. What makes my situation even more complicated is the fact that I had a C1 C2 fusion about 10 years ago. The compression is between my styloid process and C1, of course, and therefore it seemed appropriate to involve the surgeon who did the fusion in the conversation. There is a question regarding whether I can have anything shaven off there as would normally be the case. Also, it’s important to know whether the hardware or anything having to do with that fusion is affecting the big picture for me. Dr Pereira finally agreed on that point and was supposed to have sent all of my information to that surgeon who is in London, and I just spoke with that office today and found out that what he sent was not the correct info. They’re also back logged about four years, they told me on the phone today! I asked is it possible even if I can’t see him, if the surgeons could just have a professional conversation and the answer was no. He won’t engage unless I have an MRI which I’m assuming would have to be out of pocket because I can’t wait any longer. He is so far behind with seeing new patients, and I would apparently be considered a new patient at this point, that it seems I will have to be carrying on without his input.
In the meantime, my symptoms are getting so much worse. It’s at the point now where I don’t get any respite. The pressure, the whooshing, the dizziness, blurred vision, intense headaches, yada yada yada… It’s just so very bad. It wakes me up if I do fall asleep, and it doesn’t even settle down when I stand up. I am desperate at this point. I’m looking to consult with somebody in the US, or Canada if there was such a person, who has had a lot of experience with severe stylo jugular compression syndrome and would potentially have experience with someone with my particular complications. I have a lot of medical issues, and on top of that, apparently bones and veins et cetera are quite tiny in my head and when I had that C1 C2 fusion all those years ago, they had to use a special CT scan that was made specifically for children in order to complete that surgery successfully. If anyone has names and contact info for surgeons who might be able to tackle my issues with confidence and ability, please do let me know. I have noted the names of cognetti, Constantino, and Hepworth. I have heard that these particular surgeons have dealt with IJV compression issues and may have the level of expertise require required. But, I would really like to hear from you folks who have had so much experience advising people like me and who really have the skinny on the who’s who in this type of procedure and care. Any help would be greatly appreciated! I thank you so much for everything, already! I have learned so much from you all.
@Deanna, I’m so very sorry for what you’ve been through in CA & that you’re now having to look outside of your country for help. I’m curious who the doctor in London is w/ a 4 year wait for a new patient. Do you recall his name? The most experienced vES surgeon we know of in the UK is Mr. Axon so it might be worth contacting his office:
•Mr Axon, Addenbrooks Hospital, Cambridge (Otolaryngologist/ Skull base surgeon, very experienced with ES surgery, special interest in Pulsatile Tinnitus. Also does private work at Spire Lea hospital, Cambridge, for Spire Health care. Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospita
We have one doctor on our list in Nova Scotia who’s done a more complex surgery for one of our members, @TML. Though he didn’t have a cervical fusion, he had both bilateral ES & Hyoid Bone Syndrome plus compression of his internal jugulars & some part of his carotid arteries. His surgery was seemingly successful & at last count, he was awaiting a second surgery for his second side.
•Dr. Jonathan R. B. Trites - Halifax, Nova Scotia - Does ES & Hyoid Bone Syndrome surgeries - Jonathan R.B. Trites - Division of Otolaryngology–Head & Neck Surgery - Dalhousie Universit
As far as doctors in the US go, Dr. Cognetti is booking initial consults in Sept. & Dr. Hepworth is booking in July, I think. Dr. Costantino is booking in May/June. Dr. Nakaji in Scottsdale, Arizona, has also done quite a number of successful surgeries for our members, though several of our members who had more complicated cases haven’t noted good recoveries so far.
I have to say that no doctor has a perfect record when it comes to good surgical outcomes. I believe each does the best (s)he can while doing the surgery, & sometimes a patient’s body just doesn’t respond in the manner expected. Of course, there can also be tough decisions made during complex surgeries that sometimes don’t lead to optimal outcomes.
Have you tried sleeping with head & shoulder elevation at night? A wedge pillow can be very helpful with that, but you’ll need to experiment with how much elevation you need to help reduce your headaches/pressure when you sleep. Also some of our members have had great results with head pressure reduction by taking a Rx blood thinner such as Brilinta, Plavix, or Xarelto. It can take 3-4 weeks to make a difference once the med is started. If you want to try low dose aspirin first, that is also an option.
We’ve recently had several members post that seeing an osteopath & having gentle cranial/cervical work done has helped a lot in reducing pain.
Rosie in the UK posted this information today. I don’t know if any of it would be helpful for you, but it’s food for thought.
I hope you’re able to get a consult ASAP with whomever you decide to meet with next. Please let us know what you decide to do & how things are progressing for you. 
Hi @Deanna I am sorry to hear your story. I understand that you have a similar health care system in Canada to our NHS in the UK. Was it Jonathan Hughes in London you were trying to see? What about Mr Axon in Cambridge although it would have to be a private appointment and it would be best if you had a CT with contrast for him to view.
Regards Rosie
Oh, @Deanna , I’m so sorry that you’re not able to get treated in Canada, and that you’re feeling worse, it’s so much when you already have lots to deal with, and having waited so long to hear from Dr Periera too 
Was it in London Ontario you heard about a doctor, or London UK?
The doctors you mention are the best in the US for VES- Dr Hepworth in CO, Dr Nakaji in AZ, Dr Costantino in NY or Dr Cognetti in PA. Some members have told us that Dr Nakaji insists on having a CT venogram with pressure testing manometry before he agrees surgery, so not sure if you would want to have that done given your medical history, so he might not be the best one for you.
Otherwise Dr Aghayev in Turkey has done surgery for international patients, here’s a discussion by @Val7426 :
A Canadian’s Journey: VES Surgery in Türkiye Dec. 10 - General - Living with Eagle
And some videos by Dr C and Dr A about IJV compression, you might find it interesting to see their approaches:
New Video from Dr Costantino Regarding Jugular Vein Compression and Surgical Intervention - General - Living with Eagle
A Review Of IJV Compression by Dr Aghayev - General / Research Papers - Living with Eagle
I don’t know if any supplements are worth a try, we’ve had some discussions about that, there’s info here:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I hope that you can get someone to treat you soon, hugs & thinking of you
I keep forgetting there’s a London in Ontario. 
Thanks for the reminder, @Jules!