I just wanted to wait till I talk to DR Cognetti to update you all since I was also considering other US doctors at the same time. I did have a consult with him yesterday and found the guy very kind and knowledgeable though he was not a vascular guy, he understood the IJVS thing very well. So I decided on him given the competitive price he offers for Canadians coupled with his extensive knowledge & experience on styloidectomy and the close proximity to where I live. I also did consult with a number of Canadians that went through the procedure with him and I wanted to thank them all (@boogs99, @AnnieK, @Tomas10 & @Mindy). They have increased my confidence in him and his team.
So I am scheduled for surgery on Oct 28 with Dr Congetti. Hopefully will update everyone as things progress. I also understand that this is just the beginning, I might also need some work on C1 but will see what resolves after this surgery.
I also wanted to add that I wanted Dr Hepworth first but because of his busy schedule (longer wait times) and the higher cost, I settled for Dr Cognetti. Also, I already have a vascular surgeon that did all the testing (Catheter Angiogram/Venogram) that Hepworth orders prior to the surgery so in my case, it did not make sense to do it all over again since it carries risks. I will only need to do it after the Styloidectomy (Which Hepworth does as part of the surgery which makes him great in that he can treat any residual stenosis with ballooning or scar removal) but I can do that here in Canada with my vascular surgeon to make sure the left IJV is fully open. For those folks, who want to ensure the IJVS is fully open by having Catheter Angiogram/Venogram Prior & Post Styloidectomy, he is the best if the cost & distance is not an issue.
You have waited so long for this @KoolDude, & you’ve been so incredibly helpful to our members during that time! I really hope this surgery turns things around for you & this long quest for ES & IJV compression recovery will be over. It’s good that you have a vascular surgeon you can rely on in Canada. Having back up, just in case…, is so important.
Your surgery date is on my calendar (you share a surgery date w/ DDMarie), & I’ll be praying for the best possible outcome.
That’s great news! You’ve been so helpful here that it’s brilliant you’re able to get your surgery at last!
I’ll be praying that it’s successful
Thanks @Jules. You and @Isaiah_40_31 are the stars here when it comes to helping ES folks. We do have a beautiful country but lack ES surgeons which is sad because Canadians are left with no option but to flock south of the border for treatment.
Dr. Cognetti was recommended to me by a neurologist at Stanford. (I saw Dr Damrose at first, but my styloids are not long, it’s the C1 jugular stenosis.) I’m seeing Dr. Hepworth’s office next week. Thank you for your detailed comparison info. Best wishes for your surgery.
Thanks @Violin. You can try Dr Peter Nakaji of Arizona if you want to get C1 shaved as well. In my case, the compression ratio appears to be 3:2 meaning roughly ~60% from Styloid and ~40% from C1. This is based on my observation from my images. It is not by any means a measured quantity in imaging. I like to quantify things hence using the ratios. So I am thinking that I will benefit from Styloidectomy alone if my math holds up and that the IJV does not prove to be fibrotic (needing stents eventually) and opens up on its own after the removal of the Styloid.
I am just beginning the journey in Canada of finding a surgeon to perform a bilateral styloidectomy or at least one side to see if that is sufficient to address the flattened jugular veins. I was diagnosed in the US via a cone beam CT scan, IJV studies and a CT Venogram. I was prescribed a myobrace which when using it lying down,opens my jugular veins by 50%. Also, the jugular veins open up when lighlty touching my tongue to the roof of my mouth. I have had a consult with Dr. Osborne in LA but am hoping to have surgery in Canada. Has anyone made any in roads in finding an experienced Canadian surgeon who does styloidectomies? Laura
First, I wish you find a good surgeon here in Canada but as you can see the title of this thread, I am seeking a surgery in the US because I was not able to get it done here in Canada for a number of reasons. I am not saying you can’t find someone to do it here Canada as some folks did actually get the surgery done here either intraorally or transcervically but they were a few of them and not many surgeons here in Canada are experienced in this area of surgery (Based on my experience). I see that you are from Manitoba, my friend @Siren is from there, perhaps, you can contact her to guide you better in that province. You can also search this forum for Canadian folks who had it done here in Canada.
Hi @Laurah, as @KoolDude mentioned I’m in Winnipeg, Manitoba. You’re probably only the second ES patient I’ve heard of in MB.
Since Oct 2019, I was trying to figure out what my mysterious throat/neck issues that wouldn’t go away and had multiple appointments in and out of the health system. Spent $thousands on chiropractor, massage, physiotherapists, acupuncture, dentists, oral surgeon. Then based on 2019 CT, I had confirmation of bilateral elongated styloids in Jan 2022 and ever since I have been trying to convince my ENT that this is Eagle Syndrome. But even then my ENT still wouldn’t fully commit to ES and admit something was wrong even though I had been suffering with consistent and worsening symptoms since Oct 2019.
I have come across noone in Manitoba that will do the surgery other than Dr. Viallet who has been mentioned to have done someone’s styloidectomy but the ES patient didn’t reply to my post on Facebook group. I read he won’t do surgery on <4cm.
After a very long struggle of being told “it’s muscle”, “it’s acid reflux”, offered PPI when I don’t have GERD and scopes/gastroscopy confirmed no GERD, offered anxiety pills, offered stress management counseling, I gave up on our health system. After much hesitation (only because of the cost, risk of doing out-of-country surgery, plus COVID) I sent my file to Dr Cognetti in May. It wasn’t until Sept 2022 that my ENT finally admitted that my styloid may be irritating my left tonsil. My left jugular compression was not acknowledged/affirmed by ENT because “cancer patients function fine with only one jugular”.
Based on my suggestion, in Sept 2022 I was finally referred to Dr Campbell in Ottawa but I can’t wait any longer for a response. I’m not even sure why I asked for it - possibly hope that by some miracle I could have surgery in Canada. If I have to wait anymore, I will lose my mind.
I am sorry to hear of your struggles. Like me, you must also feel abandoned by the Canadian medical system which I essentially gave up on a few years ago. It was like trying to get water out of a rock! The denial and contesting by Canadian GPs and specialists of US based diagnoses only adds another layer of grief to the whole experience. I am happy to hear that you have made the decision to see Dr. Cognetti and I hope that you have someone to support you through the process should you have surgery. I will continue to investigate whether there is someone in Canada as I know from my consult with Dr. Osborne that the surgery is 41,000 Canadian per side. There is a doctor in Burnaby who apparently does the procedure.
